ELIZABETH JOSEPHINE DAVIS

  August 14, 1952 -  April 14, 2008

DAVIS, ELIZABETH "LIZ"

Elizabeth "Liz" Davis passed away April 14, 2008, after a long battle with cancer. Liz was born in Belleville, IL., to parents Walter and Mary Harter. Her parents preceded her in death. Liz is survived by her beloved husband, Mike, and their loving canine companion, Emma. Also survived by family she adored, sisters Christine Murphy and Joan Ehret, and brothers, Mike (Michelle) and Steve (Kerrie) Harter, brother-in-law Bill (Shelle) Davis, nieces and nephews - Joseph (Anissa) Toenjes, Mark Jr., Julie and Jenna Ehret, Amanda Ellison, Kaylyn, Brianna, Madeline and Claire (Cece) Harter, and Kaitlynn Alexander, Amanda Davis, Stacey Davis, (great niece) - Jaeda Davis, Stephanie Davis, (great nephew) Tyler Campbell.   All meant the world to her. Liz has life-long friends in Minnesota, Texas, Illinois, Florida and Colorado. Mass of Christian Burial, Friday, April 18, 2008, 10:00 a.m., St. James Catholic Church, 1311 Oneida St., Denver, CO with burial to follow at Fairmont Cemetery. Donations may be made to rocky Mountain Cancer Center Foundation, 1161 South Vivian St., Lakewood, CO 80228 or Denver Dumb Friends League, 2080 South Quebec St., Denver, CO 80231.

Tuesday , April 15, 2008

Services for Liz will be held Friday, 10:00  a.m. at St James Cathedral on 14th and Oneida.  With the burial  immediately following at Fairmont Cemetery.  Afterwards we'll have a reception at our home in Aurora.  Call 720-840-7690 for directions.

The obituary should appear beginning tomorrow in the Denver papers.

Thanks to all.

Mike,  Emma (and Liz)

Monday , April 14, 2008

Today at 6:40 p.m. Elizabeth Josephine Davis (Harter) passed away!    I held her in my arms as she slowly stopped breathing.  What a godsend.  Shelly and Bill were with us at the time and our good friend Lawrence walked in as I was saying goodbye.   Joan, Julie and Jenna arrived later although too late to hear Liz say goodbye, it was in time to say goodbye to Liz.  The employees of Denver Hospice have done a fine job and were on the scene immediately to assist.

Liz had spent a couple of hours Sunday with Father Felix, making things "right", so we know god has a new angel tonight.

We hope to have arrangements made for services Friday at St. James Catholic Church on 14th and Oneida.

Thanks for your prayers.

Love you all,

L, M & E

Friday, April 11, 2008

This has been a pretty busy week.  Since additional efforts to target the cancer potentially have more negative effects than positive, we had to make some decisions.

The "team" has made a determination to change the treatment status from "palliative" care to "in home hospice" care. Briefly defined, hospice is "a program that provides special care for people who are near the end of life and for their families, either at home, in freestanding facilities, or within hospitals". 

Liz and I are a bit scared in dealing with this head on now.  There's so much to try and decipher about the best method of care including the easiest ways of moving around, easiest foods to tolerate, etc.  It'll definitely be a learning experience. 

Liz is handling this like a champ!  She makes sure that the first thing done each day is to take a shower and get presentable.  She's lost so much actual bodyweight, but has been gaining water weight in her lower legs and feet.  I can just barely get her socks on. 

We just received a few hospice items....automatic bed, shower bench, and a walker. 

Liz hasn't taken the new equipment for a demo run yet, but we'll  see how they work later.  If  the bed can function well enough to allow a little bit more comfort while sleeping that will be a big plus.  The last couple of weeks she's been sleeping in the recliner, endlessly trying to find a comfortable position.  That gets pretty tough after a while and puts a crimp on a good nights rest.

The care team recommended that well wishers try to make an effort to visit "sooner than later" to take advantage of the strength she has now.  Let us know if you'd like to stop by.  She'd love to see you all, but also needs the rest.

Her good friend Char is coming by to sit with Liz for a few hours on Sunday, and give her a break from my way of doing things.  I'm sure she'll appreciate the fresh face.

Then Monday, Sherry from Belleville, IL will be coming in to stay for a week with her daughter in law from Arvada.  She'll be able to provide some additional assistance next week.

So, we're hanging in there and getting a little help from our friends and family.  What else could we ask for?

Love to all,

L, M & E

Tuesday, April 8, 2008

Well, it seems that we've reached a turning point in this ordeal.  The gemzar side effects were so devastating after the previous two infusions (with minimal benefit at best) that we've decided to opt for the remaining quality of life as opposed to trying to eek out every possible week.  We met with Dr. Kogel Monday and she concurred.  Although she wouldn't stand in the way if Liz wanted another infusion, she recommended that we consider the repercussions carefully.  Any other clinical trials  have criteria that preclude Liz's condition.  So options are minimal!

We're now enrolled in the Kaiser sponsored Denver Hospice Palliative Home Health Care program.  They provide a visiting Dr., nurse, social worker, and chaplain.  Dr. Lise Barbour is a Kaiser employee.  The nurse, social worker and chaplain are associated with Denver Hospice. 

They come in as a team to assess the on site situation with the goal to make Liz as comfortable as possible in day to day functions.  They immediately recommended a humidifier for the oxygen base unit and that's cut down on bloody noses a lot.  Also by providing an additional portable tank (3 now) we're able to go to work and not just stay home - or have to leave in the middle of the day to get some air.

We've also concocted a secluded area in the office where Liz can nap from time to time, and when energy permits, she grabs the oxygen tank cart and does everything from preparing her EBay invoices to supervising the packing in the warehouse.

Medication has been provided to moderate the pain, but it still breaks through sometimes in debilitating waves.  It's a tough fight but Liz is holding up and responding admirably.  She's got some great support around her.  Her sister Joan calls daily, (and sometimes several times a day).  Both brothers, Steve and Mike, and their families, also call frequently.  I know they'd all love to share some of Liz's remaining time.  And of course Kristy in Minnesota.  They've talked for 2-3 hours every Sunday for over 13 years and we know she'd be here if she could.

We've also had calls and offers of assistance from all of our friends and family here including Bill and Shelle.  All of  Liz's friends here (way too many to name individually)  and back home have offered their love, prayers and support. Especially Dr. Chuck Vaughn, her ex boss.  He even house delivered her Communion Sunday.  Although she wasn't able to receive it due to ill feelings, it's great to see someone who cares that much.

So now, with the "team" arriving tomorrow, we'll assess the future and where we go from here.

We do need to make a determination on out-of-state visitors.  I know they'd all like to be here now, but it's so difficult for me to maneuver with a lot of "guests". ( I think I need a little time with the social worker myself).

Thanks again for all your prayers and support.

Love to all,

L, M & E

Saturday, March 29, 2008

I'm giving Liz a hand with this latest update.  She's not too energetic lately and is using most of her strength on day to day survival.

We've just had a great Easter!  Most of Liz's family from Illinois were here to visit for a week or so. On Easter Sunday, we added Steph, Stace, Jaeda and Chuck Vaughn to round out a pretty full house.

Everyone pitched in and made it as easy as possible for Liz.

Liz however is not doing so well.  Her cancer is not only progressing and multiplying in the existing tumors but spreading significantly to the liver and bones so she's experiencing more and more pain. 

The only chemo therapy available now is Gemcidabine (Gemzar).  Since this is not processed in the liver the thought is that it might be tolerated better that some alternatives.

The first weekly infusion was done March 18th and the after effects were horrible.  First, Liz had discontinued the clinical trial only a few days before and still had the trial medicine in her.  Then she had exposure  to "flu" carriers at the clinic.  In addition, the after effects of the Gemzar infusion were expected to be difficult on their own.

It seems that either one or all of these combined for a few hard days.  The results were a very bad stomach, and much greater pain that usual resulting in the continual lack of sleep (and strength).  A blood test revealed a severe drop of platelets (clotting agents) in the blood, so Liz had a transfusion of platelets and the results seemed good.  It brought them from a low of 20,000 back to near 60,000 (the normal is 150,000 plus).

Her strength came back significantly and allowed her to welcome the arrival of her sister Joan and brother Mike and nieces Julie and Jenna on the 20th.   Finally, on Saturday, her brother Steve and his wife Kerrie and their little ones, Madeline and Claire, arrived with Kaitlynn.  Then finally  Joe and Anissa (nephew and his wife).

The visit was a real plus for Liz.  She didn't miss a thing!  Going to Easter Mass with the whole family, out to dinner, etc.

Although Liz's energy was still extremely low, we met with Dr. Kogel on Thursday, the 27th to discuss another infusion of  Gemzar.  The options would be to just try and "manage the pain" as much as possible or try a diluted mix of Gemzar, hoping to still get some cancer fighting qualities and  lessen the side effects.  The infusion went well, and after a restless night, Liz got up Friday without too much additional pain.

Just as Steve, Kerrie, Madeline and Claire were packing to leave Friday morning, Liz got a pain in her right shoulder just sitting at the table.  And boy this was the mother of all pains, (so far).  Her shoulder and upper right chest were in excruciating pain.  We waited for a while, hoping that the Tylenol that she'd been taking for previous pain would kick in.  It didn't do much at all.

We went to the emergency room around 1:00 p.m. Friday, and, after a CT scan to rule out a pulmonary embolism, we were advised that the pain was clearly the advancement of the cancer in the bones and liver and the plural effusion in the lungs.  Liz had used a pain patch, Fentanyl, in the past at a dose of 12.5 micrograms and had to cut the patch in half because she's so susceptible to any medication.  Well to alleviate the pain, the emergency room Dr. injected 100 mg. of Fentanyl.  The pain subsided temporarily, but she needed another before we left.  Now she's trying the full 12.5 microgram patch hoping that when that gets in her system later Saturday, the pain should be manageable.

We have an appointment on the 10th of April for another infusion of the Gemzar -  if she's strong enough.

We'll appreciate all your thoughts and prayers.

Love to all,

L, M & E

Friday March 7, 2008

I've started to update several times since I last wrote, but it seems like every day there was something new going on.

Well, that all ended today.

We went to see Dr Kogel on February 25th to basically "check-in" with her. I hadn't seen her since last October and wanted her opinion of what was going on. And, what to do in the future if the study drug quit working. She ordered a PET Scan, just to see what the cancer looked like.

I have to say, I'm sure glad we went.

I had the PET done this last Tuesday and got the news today.

First off, the clinical trial is over and I start conventional chemo again next week.

The bottom line to the scan shows not only have the lung tumors multiplied, in quantity and size, but now there is over 50% of my liver affected with cancer but my right hip and 2nd right rib as well.

This is not the news we were expecting.

There is only one drug that might work at holding the liver tumors at bay. If it doesn't, there really is no other chemo drug to use. Or, there may be another trial at Rocky Mountain with Dr Jotte, but another trial is not recommended at this time.

I will have to be 30 days, drug free to qualify, and at the rate the tumors are growing, that's not a good idea.

So, Dr Kogel's RN, Cally, will be calling me on Monday to set up a day next week to get started on chemo again. It's a once a week drip, rapid infusion.

That takes care of any thoughts of going to Illinois to see my family over Easter, but if I don't get the chemo going, there will be no trips home.

I need to ask all of you to please pray for not only me, but Mike as well. This has been very hard on him and he has been my rock through it all.

I'll do my best to update after I get things going next week. Bear with me if I'm a bit behind.

Thank you all for your support and prayers, we appreciate it more than I can say.

Love to all,

L, M & E

Wednesday February 13, 2008

Quite a lot has gone on since I last wrote. Not only with doctors but we also moved. We finally got into a great house with a ranch floor plan. We moved to Aurora so we were closer to the University and to work.

So now about the doctors.

The radiologist was not in favor of doing treatment at this point. He'd like to reserve that for the future when I have no other options, or if I decide to go to Dr Jotte, I can have some radiation while I'm in the 30 day drug free waiting period.

At the appointment I had with Dr Camidge the end of January, he decided to try some steroids and see if that would help with some of the pain that's gotten worse over the last couple of months. Well, it didn't help. When I saw the Nurse Practitioner for follow-up, she prescribed a Fentanyl patch. It took several days to find a Kaiser pharmacy that had the low dose she prescribed, but we did. Mike took me up to Boulder last Monday to get it filled. So far, they have worked quite well. I actually cut the 3rd one  in half last Sunday. They stay on for 72 hours at a time. Half a patch isn't as effective controlling the pain, but the side effects aren't as bad either.

Last weekend I developed some difficulty breathing. I didn't know if it was related to the patch or something else. I had an x-ray done this past Monday and saw Dr Camidge yesterday to have him look at it.

There is some fluid build-up on both lungs, but really not much. He was concerned there might be a blood clot or the start of congestive heart failure, neither of which he thinks is going on since seeing the films and doing an exam. Thank God for that!! He prescribed Lasix and wants me to take that for a week until I see him again.

I have my routine CT scan next Monday the 18th and see him the 19th. I'll have the CT put right on a CD and take it with me to see him. Based on the findings of the CT, we'll decide if I stay on the study or try something else.

I have an appointment with Dr Kogel on the 25th. I haven't seen her since October and figured it was time to get her opinion of what to do if the study drug isn't working. The CT report will be back by then so we'll have all the answers we may need to make a decision.

I'll follow with an update after those appointments.

Thanks again for all your prayers and support.

Love to all,

L, M & E

Wednesday January 9, 2008

We saw Dr Jotte yesterday and got pretty well set to sign the consent for the study - until Sylvia found a clause that requires all participants to be drug and/or treatment free for 30 days. So - that through a kink in the plans.

Dr Jotte decided he needed to talk in detail with Dr Camidge before I stopped the drug I'm on.

The two doctors finally spoke and Dr Jotte called this evening.

They have decided that at this point I need to stay on the drug I'm taking. Since there is a mixed response to it, there may not have been enough time for the large tumor to respond. He said that with MEK Inhibitor drugs, sometimes it takes a couple of months to get positive results. I've been on the drug full time for about 7 weeks, so it's possible I may still benefit from it. They also both concurred I need to see a radiation oncologist and be re-evaluated for some radiation therapy. Dr Jotte's recommendation was to see a Dr at the University, since the Dr at Kaiser told me no a year ago, it would be best to have a new, un-biased opinion.

So, for now I stay on the drug I'm taking and call tomorrow for an appointment with a radiation specialist at the University. As soon as I see that doctor, Dr Jotte wants me to call him. We'll decide at that time, based on the results from that doctor, what we're going to do. It looks good that I can get into the new study at any time, following the 30 day wait. That's what we don't want to jump the gun on. If the drug I'm taking is working and I can get a bit of radiation to the new parts of the tumor, I'm better off not being without treatment for 30 days. I can always work on getting into that study in the future.

I'll be back with an update as soon as I get new information.

Your prayers have helped - thank you all!!

Love to you all,

L., M & E

Friday  January 04, 2008

The month of December turned out to be very uneventful, as far as doctor appointments go! I had my appointment with the nurse practitioner the end of November and it was a piece of cake. I was to continue taking the medication twice daily, since I was having no problems and no side effects. An appointment was scheduled to see Dr Camidge on Jan 3, 2008.

I had a CT Scan on December 26th, so the report could get to Dr Camidge by my appointment. It was a good thing I had the scan put on a CD, the report hadn't been transcribed until yesterday afternoon.

After reviewing the disc, Dr Camidge felt the medication was working as the tumor appeared to be shrinking, and I should continue for the next 4 weeks on the study.

I have had some increased aches and pains, but we didn't really know why.

Well, we do now - since the report was printed.

The tumor has not shrunk, just spread out. You couldn't see that on the new scan, without past ones to compare it to. On the October 1 scan, the tumor measured 4.9 X 3.8. It is now 5.2 X 4.1. The position has changed, now abutting the mediastinum, making exact measurements difficult. It has also encased the left subclavian artery. There is a nodular area that has also increased in size from 1.1 to 1.5cm in diameter. There is also a new small left pleural effusion measuring about 1cm in thickness.

Good news is that the mass in the right lung has decreased in size from 2.7 X 2.5cm to 2.2 X 1.9cm.

SO  --  following the review of the actual report, Dr Camidge called me yesterday afternoon to discuss options. (At least we know now where the pain is coming from!) Dr Camidge doesn't think the growth is enough to warrant removal from the study, since we did have some regression. He also had the thought of some palliative radiotherapy to part of the tumor to assist in shrinkage. The only problem with that could be it may not be allowed while on the study. He was going to call Astra Zeneca to get their guidelines for soma additional treatment. The other option is to not change anything for 4 weeks, repeat the CT Scan and see how things look then. He said he'd get back to me as soon as he had an answer.

Well, being one not to sit back and wait, I told him I was going to make an appointment with Dr Jotte and get his thoughts. He spoke very highly of him and thought it was a great idea to get his opinion.

So that's just what I did!

We went to see him today and now have something else to think about. He's not 100% in favor of continuing on the study since the curve of regression in the right lung does not outweigh the progression in the left lung.

He has a couple of openings in a trial for a drug called Terameprocol (EM-1421). His clinical co-coordinator, Sylvia, brought us the information on it, going over a few of the main details. One big one would be having a surgical procedure to have a Titanium Port put in to infuse the drug through. The drug is in a pump that infuses for 24 hours at a time, once weekly for 3 weeks with one week off in between. Labs are drawn quite often, as with the drug I'm on now, to monitor the toxicity levels.

We're doing our "homework" this weekend on this drug and the study, and Dr Jotte is doing his, by reviewing the last 3 CT scans I had done, (October, November and December) along with the reports. We have a follow-up appointment for Tuesday January 8th at 10:30. He will also get in touch with Dr Camidge and Dr Kogel to get their opinions of switching me out of the University study and into theirs. Kaiser may allow out of network benefits as the study is not available through the University, but it could be a battle. Sylvia said it has been done, so we'll do what we have to, if I qualify for the study and if the doctors think it might be a benefit to me.

We'll update following the appointment on Tuesday.

Thank you all for your prayers and concern. It sure helps keep me going!!

Love to all,

L. M & E

Tuesday November 27, 2007

Today I finished the second and final half day at the clinic. Last Tuesday and today we had to be at the clinic at 7:30 am for pre-dose labs. Once they came back in acceptable levels, I was able to take my meds and start the post-dose blood draws. These 2 weeks were not nearly as bad as the first two. They drew blood at one hour, 2 hours and 4 hours after taking the drug. Sure a lot better than the first two weeks!! This was the last day of the post-dose labs. From now on the labs will only be routine, to make sure my counts are not dropping, as they often do with chemo, whether pill or standard IV Drip.

I saw Dr Camidge today for a check-up. He gave me the go ahead to continue. I've had no adverse side effects, such as rash, hand and ankle swelling, nausea or bowel problems. I have also, on a good note, had less pain in my chest, back, side and under my arm. This is very good. Since the beginning I have known right away when things were not very good, as the pains worsened as the tumor pressed against the nerves on my spine. By easing up, I am very hopeful this drug is having some positive results. Mike asked about repeating an x-ray to see how things looked,  but Dr Camidge said it could take a good month before there were any obvious results, that's why they wait a month before repeating the CT Scan. An x-ray would not show anything significant, at this point. So we wait. I have a feeling it's going to be a long month!

I go to see the eye specialist this Thursday for an evaluation of the "narrow irises". I really don't want to have any surgery, laser or otherwise, at this point, unless she feels it's really necessary. But, I feel like I owe it to myself to get her opinion, regardless of the outcome.

Next Tuesday, December 4th, I have routine labs drawn, see the Nurse Practitioner and get my "calendar" for December and January. They have scheduled a follow-up eye appointment at the University for the 6th. This is part of the study, but as with the first time, I can't complete the entire exam since I can't have my eyes dilated, so the may cancel that appt. I guess a lot will depend on what the Kaiser Dr has to say on Thursday.

I'll have the repeat CT Scan probably the week of Christmas and see Dr Camidge again the first part of January. At that point he'll either keep me on the study or take me off. The parameters for remaining on the study are less than 20% growth or decrease in tumor size. We're going for the decrease!!!

I'll update after my appointment next week, with the schedule for the month of December.

Thanks for all of your prayers, they must be working.

Love to all,

L, M & E

Sunday November 18, 2007

Well, so much has happened in the last month, I'm not sure where to start!

After a couple of weeks of "paper shuffling", I FINALLY got going in the study. YEAH!!!

I had numerous pre-entrance tests that I needed to "pass" prior to the start of drugs, an EKG, MUGA Scan (heart function), eye exam (where they found a slight problem, but that's another story), complete physical, lab tests and a CT Scan. It took over a week to complete them all. There goes nearly a month!

On Tuesday, November 6th, I went in for my first day of the study, AZD6244 Part B.  We got there at 8:00 am and I got the drug at 11:37 am. This was the liquid form of the drug. My one and only dose of liquid. I had to be there for 12 hours, have blood drawn every 10 minutes for an hour, then every 1/2 hr for 2 hrs, then 1 hr for 2 hrs, then a 2 hr break and finally 4 hrs. They let me pass on the 12 hour draw as it would have been 11:30 pm and they didn't want us to have to come back up there that late. What they look for in these times is called a "peak and trough", how the body breaks down the drug. I had to go back on Wed. at 11:37 am for the 24 hr draw. I didn't take any other drugs until the following Tues, Nov 13th.

We got there at 7:30 on the 13th and finally got drug at 9:30. I started on the pills today. I took just one dose, having my labs drawn on the same schedule as on the 6th. We did go back for the 9:30 pm draw, then came home and crashed!!! Those are VERY long days!

On Wed. I went in for the 9:30am draw then started on the pills twice a day. Which is where I'll be until they tell me to stop,

We go back the next 2 Tuesdays, but thank goodness for only 4 hours each day. They draw pre-dose labs, I take the pills and in 4 hrs they re-draw my blood. If all is OK, I continue the dose until Tues the 27th, when the 4 hr draw is repeated. I'll see Dr Camidge on the 27th for his evaluation. We do know that both tumors have grown in the nearly 2 months with no treatment, but we're praying this drug kicks their butt! I have a repeat CT Scan the end of December so I'll be real curious to see what it shows.

I can tell physically that they have grown. I have a heaviness in my chest that's new and I have started "the cough". There is no fluid in or around my lungs and that is wonderful. My heart is excellent and labs are all perfectly normal. The story with my eyes is called "narrow angles". It's hereditary and very common. The irises are very close together and can burst if the eyes dilate. It's easily corrected with laser surgery and I go to see an eye specialist on the 29th for her opinion. So far I have 2 different opinions as to the degree of severity from 2 ophthalmologists so I'm curious to see what she has to say. I'm not real crazy about having anything done that's not absolutely necessary. If I've had this all my life, I can live with it for the rest!! There is a chance of bleeding and infection and I really don't want to deal with either right now.

I want to concentrate on this drug and the possibilities it offers.

I keep thinking back to this time last year when Dr Menter (the Dr covering for Dr Kogel while she was on maternity leave) told us they had completed the "standard of care" for my diagnosis and I should go visit family and friends and call them when I was ready for hospice. Ha, Ha, Ha...

We're asking all of you to pray this drug keeps me here another year (and more, but I'm taking it a year at a time!) so I can say Ha, Ha, Ha to all of them next year.

We wish you all a wonderful Thanksgiving - I know we definitely have a lot to be thankful for, and we are.

Love to all,

L, M & E

Wednesday October 17, 2007

We went to see Dr Ross Camidge at the University yesterday and spent about 2 1/2 hours with him and his fellow, Dr Jason Call.

After reading Dr Camidge's credentials, we were a bit intimidated. He is triple board certified, in Internal Medicine, Medical Oncology and Clinical Pharmacology and has a PhD in molecular biology. He's a graduate of Oxford University in the UK and recruited to the University in 2005. But, what a treat. He is about as down to earth as they come and truly cares about patient well being.

He went over the pros and cons of continuing with conventional chemo vs. enrolling in a clinical trial, the different trials they had to offer and the trials I might be a candidate for. In the end, they have one that looked interesting.

It's sponsored by Astra Zeneca and is a drug they're already dispensing in liquid form in previous trials. The group I would be in is for evaluating the effectiveness of the liquid versus tablet. The drug shows some promise as an MEK Inhibitor.  That is, not necessarily shrinking the tumor, but stopping the growth. This is the link to the actual study....... http://www.arraybiopharma.com/ProductPipeline/Cancer/MEK.asp

After reading a copy of the consent last night, I called and let them know I would like to be considered for the trial. There are numerous tests that have to be done in the screening process, from a complete physical to an ECG (electrocardiogram) and a MUCA (heart function) scan. They also do labs, and an eye exam. If all the tests come out normal, the enrollment process begins. The main trouble with the whole thing is the length of time between now and the start of the drug. It will be several weeks. That will put me 2+ months without any treatment. That's not so good, as we already know the tumors have grown. But as Dr Camidge also pointed out, I can always stop the trial screening and do some conventional chemo again and come back if the next drug stops working like it should. The main problem with that is, right now my lab levels are all within normal range and my overall health is good. After several more rounds of chemo, that could change, making the benefit from the trial drug less effective. WHAT A DECISION!!!

But Mike and I both think the benefits of the trial, even the wait, far outweigh the benefits of 5th line conventional chemo. There are only a few more drugs that are used for lung cancer that I haven't had, and I can always get any of them if for some reason the trial drug doesn't stop the growth as it should.

We'll be concentrating our prayers on a quick enrollment and of course, a positive outcome from the trial.

We'll update as we get new information.

Love to all,

L, M & E

Saturday October 6, 2007

We went to see Dr Kogel on Thursday, October 4th, for what I thought was going to be my 4th treatment.

She sure surprised us.

From the CT Scan report, it appears that the tumor in the right lung, that was about the size of a pencil dot, has grown slightly. The main tumor in the left lung continues to be stable. But, due to the slight increase in the right tumor, she decided to suspend further treatment and send me to the University of Colorado Cancer Center, to evaluate me for participation in a clinical trial. The physician she would like me to see is Dr Ross Camidge. He is the Director for Phase 1 Clinical Trials. They have local, regional, national and international trials, not just trials sponsored by drug companies.

To be eligible for a trial, most require a minimum of 4 weeks since treatment, and since it's already been 3 weeks, I'm quite anxious to get an appointment and get started. If I did a treatment on the 4th and a trial came up in 3 weeks, I wouldn't be able to participate. 

As she put it, "to do a treatment would make it appear the Taxotere was working, and it's really not". It's holding the main tumor at bay, but it's not shrinking it. It was a judgment call on her part, and I have to have faith that she has a game plan for me!

I can always go back and resume treatment with the remaining doses of Taxotere, and there are 2 other drugs I haven't tried yet. So my options are not exhausted, just rearranged.

I'll write again as soon as I see the Dr. Camidge at the University.

Please keep us in your prayers. My prayers at this time will be concentrated on getting into a study with a new and promising drug therapy.

Love to you all,

L, M & E

Saturday September 22, 2007

I had my third treatment on Thursday, Sept. 13. Prior to treatment, Dr Kogel told us that the x-ray report showed a slight decrease in the size of the main tumor. It went from 4.1cm to 3.8cm. The radiologist didn't think it was enough of a decrease to consider it "regression", but we sure do!! The tumor didn't grow, so any decrease is major. She scheduled a CT scan prior to number 4 instead of an x-ray, so we have a second one to do a comparison. Her main thought about that is, the way the tumor likes to grow out of nowhere, we need to keep a very close eye on it. At the first sign the Taxotere isn't working like it should, she's sending me to the University to get enrolled in clinical trials. I can always continue with conventional treatment but she doesn't want me to miss out on a good trial by giving me conventional drugs, just because.

For the treatment, she asked Courtney, the RN Supervisor to start my IV since my veins are a bit compromised. She had no trouble at all - yeah! The actual drip went very well. I've been extremely lucky that I have had no side effects from any of the drips. The Taxotere can cause internal swelling, hives and body flushing, same as the Taxol. I have never had a reaction to either drug. The only "side effects" I've had since the first treatment, are from the steroids, keeping me awake at night. We did the same 30 minute post drip flush as before and extended the steroids for 3 additional days again. It sure seems to do the trick. I've had no aches and pains and for that I am very grateful.

Mike and I went to Vegas on Monday Sept 4th and worked a booth at the Vegas Bridal Show. It was 3 long days - from 9 to 6 on Wed, Thurs and Fri. and 9-1 on Saturday. But it was great to get away, even if it was work! We didn't have a lot of time to casino hop while we were there, but we did spend some time at the slot machines. I won a little money, very little, but it was better than losing.

We drove, allowing us to take our time and sight see as we went. We spent the night in Grand Junction on Sat and got home about noon on Sun the 9th. We had a pet sitter stay here at the house and Miss Emma did just fine. It's so much easier on her not having to be boarded. And Anna is wonderful with her. She spoils her just like we do!

I have my CT scan and lab tests on Monday the 1st and my next appointment on Thursday the 4th.

I'll update following that visit.

Thanks so much to all of you for your prayers.

Love to you all.

L, M & E

Friday August 31, 2007

A lot has been going on this past month. I had my first treatment with the new drug, Taxotere,  on Thursday, August 2nd. It didn't start out too well, as the RN "blew" 2 veins and had to have help with the 3rd stick. Then she pulled the IV out a bit and some of the drug leaked under the skin, causing a burn. Not a great way to start, but in the end, the infusion itself wasn't a problem. The nurse did a quick saline flush since we had been there about 1 1/2 hrs longer than we should have. That was not a good idea, as it did nothing to help minimize the side effects. I had a very hard time with the side effects, starting on Friday night.  I had bone and muscle pain, stomach cramps, headache and even tooth pain. I couldn't get comfortable enough to sleep Saturday night. I sat in the recliner most of the night, since laying down made me hurt everywhere. They lasted almost 2 weeks and were worse than I could have imagined. I actually called the RN line twice in the 2 weeks, getting advice on what to do. In the end, Tylenol did the trick. Thank goodness. But it wasn't fun. It scared the heck out of me, worrying about round 2!

I had a CT scan and x-ray prior to round 2. The x-ray showed no growth, the main tumor is stable. That's the first time it had not grown in nearly 4 months. Dr Kogel called me on Tuesday to let me know. I don't know who was happier, Mike and me, or her! The CT showed some changes, but that's based on the reading from the last one I had in June. We knew there was growth since then, but at least we have a new baseline scan to use for future comparison.

We went August 23rd for round 2. Dr Kogel wasn't too happy to hear about the bad time I had with the first treatment so she made some changes. Instead of stopping the steroids the day after treatment, she extended them for 3 extra days. And the RN I had for the infusion was one of the best yet. She got a vein right off and told Dr Kogel at this point there was no reason to think about doing a PICC line or Central Line, I still have quite a few good veins. YEAH!! After the infusion was finished, she told me to "put my feet up, I was going to be there awhile".  Most of the nurses do a quick saline flush and send me home. Janey did a 30 minute "rapid" flush,  pushing the drug out of the vein and into the body. Well, I have to say, the combination of extending the steroid and the long flush, so far has worked. I have had no bone and muscle pain, no stomach cramps, no headache and other than some restlessness at night from the steroids, no problems at all. My appetite has actually picked up some. A far cry from the past several months.

I've started losing my hair again in clumps.  For the past week it's been coming out in palmfulls when it's washed. The first time I had it buzzed very short so it wasn't as noticeable. I went by the American Cancer Society and picked up a couple of new scarves and a pattern for a new head wrap. They should get me through Vegas, along with the couple of wigs I already had. My thought on losing my hair is, it beats the alternative!

Mike and I are going to Las Vegas next week to do the Vegas Bridal Show. It'll be 90% work, but we'll be together, out of town and we'll have the "dog sitter" stay here at the house, so we won't worry about Emma. Since I'm feeling very well right now, it should be a lot of fun (after the show ends for the day!!). Dr Kogel didn't think there'd be any problem going at this point, since my lab results were all within normal range right now.

I have treatment # 3 on September 13. Hopefully there will be no changes from this last time.

Thank you all for your prayers and support. Without them, it would be very hard to endure.

Love you all,

L, M & E

Tuesday July 31, 2007

We had the first follow-up appointment today since starting Tarceva, and had the surprise of our lives.

Mike and I both thought things were better over the last month. The pain in the center of my chest has all but disappeared and I have tolerated the drug very well.

But, not only has the tumor grown, it's grown a lot. Over 14% based on measurement calculations. It is now 4.3cm -  which is almost the size the tumor was a year ago.

 My next option is conventional chemo. So, I start on a drug called Taxotere this Thursday. It's a regular drip drug, with typical side effects. It's in the same chemo family as the drugs that I did initially, so we're hoping for some good response again. 

This regimen can continue indefinitely as long as the red/white blood cells hold up (and the rest of me).

 If and when the tumor is no longer resistant to this drug, my only option then will be clinical trial.  There's some new options through the University of Colorado Medical Center that open up some international clinical trials as well as national and local.  So, we'll continue the fight!

Please keep us in your prayers.

Love to all,

L, M & E

Tuesday July 3, 2007

I had my follow-up appointment with Dr Kogel today, and as I expected, the tumor has grown. Seems that the Alimta wasn't the drug for me after all. On my x-ray May 29th, the tumor was 3.2 and now it's 3.8. Doesn't seen all that much growth, but in the small space it's in, it's a lot. I knew something wasn't right for a week or so now, but kept hoping something would change. Well, it didn't!!

So, on to plan B.

We discussed the different options and decided on switching to the Tarceva. It's a daily pill with limited internal (blood and bone marrow) side effects. It can cause nausea, fatigue, acne type rash, skin reaction to sun exposure and diarrhea, but those are all manageable. It sure beats the options.

This pill is designed to stop  blood from getting to the tumor, stopping it's growth. It stops growth in about 20% of patients. Dr Kogel thinks that  since I had such good results from the first drug, she's betting on better results than 20%. I like that news! From what Mike and I have read about Tarceva, the majority of patients have had good results.

The only contraindication there could be is from the medication I take to control seizures. They've been under total control since 1998, so we don't want to take any chances either way. The main problem is the Carbamazepine (Tegretrol) decreases the effectiveness of the Tarceva, making it necessary to increase the dose, and by doing that, increases the chance of serious side effects. But, weighing the odds, it seems like a good idea. Dr Kogel started me on the maximum dose of 150mg, so the drug interaction wouldn't be as pronounced. I can increase a bit if necessary.

I go back on July 27th for another x-ray and lab work and see Dr Kogel on July 31st at 9:30.

I'll update following my next appointment, or if anything new develops between now and then.

Mike and I are very grateful for all your prayers and concern. It's great to know so many people are in our corner. We thank you from the bottom of our hearts. We celebrated our 5th wedding anniversary yesterday, and set our new goal on our 6th. I guess instead of taking it one day at a time, we're looking at one year at a time.

Have a great July.

Love to you all,

L, M & E

Monday June 11, 2007

Mike and I went to see Dr Kogel last Thursday, the 7th, and we were both very pleased with the appointment.

It seems Dr Kogel and Dr Jotte spoke about the drug options I have and agreed on doing the Tarceva. It's not Dr Kogel's 1st choice, but as Mike pointed out to her, if I have the option in the future to do the hard-core drugs, let's try the Tarceva for the summer (and hopefully beyond) while we can go on vacation and do some things only the warm weather allows, and not be tied to a weekly infusion. She was in total agreement. 1st YEAH of the day!! 

While we were discussing the fact that I didn't get one of the slots open for the study this time around and my future treatment plan, I mentioned the fact that Dr Jotte and I started to discuss whether we had given the Alimta a chance to work, before pulling it for 3rd line treatment. In reality, we have not. True, the tumors have grown, but compared to the previous 2 x-rays, the numbers are very small. So this is what we ultimately decided to do.

She scheduled me for another round of the Alimta today, Monday the 11th,(which was totally uneventful, as before), repeat the x-ray on June 29th, draw labs on July 2nd and see her, Dr Kogel on July 3rd. If the tumors have grown AT ALL, we stop the Alimta and she'll write the script for the Tarceva. I'll only need to have labs drawn monthly and see her monthly on the Tarceva, after we get a base-line handle on whether that drug is working. She assured us she would "be keeping a VERY close eye on me". That's great news. Hopefully the tumors won't get out of control before we make changes, if necessary.

So, that leaves us open for vacation. Thank goodness. We both need one!

We've scheduled our trip home, leaving here July 6th and returning July 14th. I CAN'T WAIT!!! Mike can't either, he's looking forward to golfing with my family and some of his very good friends there. It'll be good for us both.

We called our "dog sitter" to come here and stay with Emma while we're gone. That'll free us both while we're there to "visit till we drop". She was very happy to hear from us and looking forward to watching Emma for us. I know we'll miss her, but she'll be in very good hands.

The prayers are now focused on the Alimta working as originally planned and not having to go to 3rd line treatment.

I'll update following my next appointment.

Until then, thanks for all well-wishes and prayers.

Love to all,

L, M & E

Saturday June 2, 2007

I had an  x-ray done the first part of last week and sure enough, the tumor has grown. Not a lot, but enough to know the Alimta isn't working like we'd hoped.

I went to see Dr Jotte on Thursday to get his opinion of where we go from here. He put my name on a list for a study, involving Tarceva plus a protein blocker. There are only 3 slots open and one has been filled. There are 2 in qualifying and a fourth waiting. He went ahead and put my name in, on the off-chance 2 don't qualify or maybe decide not to participate. I'm not holding my breath, but I'd sure like a chance.

His thought, based on not participating, was to start Tarceva anyway. I'll know on Tues or Wed if I have a chance.

I talked to Dr  Kogel on Thurs afternoon and she's not in total agreement about the Tarceva. Her thought was to try a bit harsher drug, either Taxotere or Navelbine, since I had good results with the Carbo/Taxol, and reserve the Tarceva for the time my bone marrow won't tolerate a harsh drug. In reality it makes sense!

I left a message for Dr Jotte to get his thoughts about these 2 drugs and should get his answer when I find out about the study.

We re-scheduled my appointment with Dr Kogel until Thursday the 7th, at 1:00. I'm getting a CT scan on Monday and labs done on Tuesday, so I'll have everything done and the answer about the study, prior to seeing her.

I don't know if we'll do a treatment this next week, or re-schedule for the following week. I'd like to just get it started.

We were going to go home for a few days, but that's had to be postponed for now. If I can get treatment started, we can go right after.

I'll update following my appointment next week.

Love to all,

L, M & E

Monday May 14, 2007

Round two was today and it went very well. We saw Dr Kogel prior to the infusion and she gave me the green light to proceed. My lab levels are within normal range, and the physical exam showed no problems. I did have some concerns about the alkaline phosphate level in my blood, that continues to rise out of normal range. This is part of the liver function and could be caused by many factors. It has always been out of range but the remaining liver function test components are right where they need to be, so she's not concerned. It could be due to the Tegretol I take for seizures, as it's dissipated through the liver and could be just enough to throw the level off. She added a Tegretol level to my lab test, to be done prior to the next chemo treatment, scheduled for June 5th.

She also ordered a chest x-ray to be done the week prior to, so that we can see if the new drug has had any effect. Since the new growth and re-growth was visible on the film, it's the least invasive way to get an idea what's going on. That's fine with me.

We also asked her about going home to Illinois for a week or so, between the next two rounds. Based on what they find on x-ray will determine what the "game plan" will be as far as treatment. Since most lung cancer drugs are administered every 3 weeks, there should be no reason we can't go back around the middle of the month. That will make me VERY happy. It's been over a year and 1/2 since we've been home and I miss my family and friends!!!

I'm counting on the prayers and drugs doing what they're supposed to, so keep up the prayers. I'll let the Doctor worry about the drugs!

Hopefully there will be no news between now and the 5th, so have a great Memorial Day weekend- and everyone - be safe.

Love to all,

L, M  & E

Tuesday April 24, 2007

Day one, round one of the new drug is over. The actual infusion lasted about 15 minutes total. That is after waiting 2 hrs to start!! The RN that scheduled my appointment last week, forgot to tell me to get my labs done prior to the infusion. Mike and I actually talked about that the other day and just figured they knew what they were doing - that'll teach me.

But, it was OK. We chatted with a couple of nurses and Dennis, the social worker, came by to say hi.

We were glad to see them, just not this soon nor under these circumstances.

Round 2 of we don't know how many, is scheduled for May 15th. I'll go every 3 weeks as long as my bone marrow and blood counts allow. Hopefully it will be for a long time. I will also get my blood drawn the day before my next infusion. I don't mind being there, but visiting is over. Now it's time to get down to business.

We'll update after the next treatment, hopefully no news before.

Now we pray the drug has the good results we know it's capable of.

Love to all,

L, M & E

Sunday April 22, 2007

The news of the day is, it's back. I went the beginning of last week for an x-ray, just to check things out and see if the pain I was having was from nerve damage or something active, and much to our disappointment, there is new growth. I repeated the PET scan and saw Dr Kogel last week. She confirmed my fear. Not only has the new tumor in the right lung grown a bit, but the original tumor has re-grown and sprouted a couple of small tumors in the left lung. Not at all what we hoped for. BUT, forge on we will.

I re-start chemo on Tuesday the 24th, with a new drug called Alimta. It's the same drug Dr Jotte was trying to get for me in the maintenance study. It has been approved and used for treatment so I'm very hopeful. There is another drug, Taxetere, that could have been used, but the side effects are very similar to one of my first drugs, Taxol, so Dr Kogel recommended Alimta.

She also beat me to the punch by calling Dr Jotte herself on Monday, to get his opinion. He concurred on the drug and starting right away rather than wait to see if I'd qualify for a study.

The infusion time is only about 10/15 minutes. A far cry from 6 hours!! They do the standard pre-infusion meds, an anti nausea, a steroid and something similar to Tagamet. Then the infusion. Barring any reaction, I should be finished in less than an hour, start to finish.

I'm sure not looking forward to doing it all again this soon.  Dr Kogel was as disappointed as us that there wasn't a longer period of recuperation for my bone marrow  She told me she had 2 words about it, "It stinks". That pretty well sums it up for us all!!

But, onward I go. There are some really good statistics about Alimta and I'm looking forward to helping the drug company keep those stats up.

We're asking for all of your prayers again. This isn't only trying for me, but Mike as well. He's been my pillar of support. Without him I'd be lost.

There was an upside to the somber news - my youngest brother, Steve, his wife, Kerrie and kids, Madeline (9), Claire (7) and Kerrie's niece Kait (17), came out last Sunday from Illinois. They spent the week with us, leaving Friday. What a wonderful time we had. I hadn't seen them in well over a year. We went to the Mint, took the Cog Railway up to Pike's Peak and went to the Aquarium downtown. My brother and Kait went fishing by Evergreen. They didn't catch anything, but they had a great time. It was terrific having my family here. Their support took some of the sting out of the news!. They would have stayed a few more days, but Claire made her 1st communion today and they had to get back.

We'll keep you up to date after the treatments begin.

Thank to you all for your prayers and support.

Love to all,

L, M & E

Sunday March 25, 2007

Well, there have been a few developments since I had the PET scan done, March 5th.

Mike and I went to see Dr Jotte on the 9th, and for the most part, he didn't think it looked too bad. He was still trying to find a drug trial for me to participate in, but had not yet. He saw the original tumor and told us that the ideal SUV (Sugar Uptake Value) rating would be around a 3. This is determined when the scan is read by a radiologist, with past films available for comparison. We told him I had an appointment scheduled with Dr Kogel for the 15th. He asked that I send him a copy of the actual report and let him know how that appointment went. In the mean time, he would keep looking for a trial for me.

So, my appointment with Dr Kogel, was a shock, for lack of a better word.

When she read the report on the PET scan, not only was the SUV a 4, but there was a NEW tumor in the right lung. Very small, by their standards, 9mm, but none the less, there. Well, to us, ANY size is huge. She really didn't think I needed to worry about it now. It's too small to biopsy and without having a specific diagnosis, treatment was not warranted.

We also discussed various studies Kaiser had going, my appointment with Dr Jotte and future plans.

Her suggestion was to speak with Dr Jotte, they know each other from their Residency years at the University of Colorado, and get his thoughts on what to do, and how to proceed. I dropped off the actual PET scan films and the report for Dr Jotte on our way home, with Dr Kogel's voice mail number.

On Fri, the 16th, Dr Jotte called me with this recommendation. "Wait 2 months, repeat the PET scan and labs, and see what they show".  He would not do treatment of any kind right now, so my body can strengthen and handle aggressive therapy if the new tumor grows between now and then. If it does grow, they may be able to biopsy it, which would be ideal, prior to starting any type of chemotherapy.

So we left it at, if I didn't have a heart attack from fear between now and then, I'd be in touch in May.

On Monday, March 19th, Dr Kogel called me with Dr Jotte's recommendation. (He called her on Friday, after he spoke to me).

She's in total agreement that if I have any type of treatment now, my body may be too toxic to accept "blasting doses" of chemo in May, if necessary. She didn't think treating what probably is cancer -  but not knowing for sure -  was a great idea. We don't know if it's the same type cancer and it's  too invasive to biopsy.

The one bright spot in all of this were my current lab results. Seems that after 3 months with no treatment, all but my red cells were at normal values. So the longer I can go between, the better they will get.

SO--- I'll repeat the PET scan and lab tests the first part of May and see Dr Kogel about a week after the scan. I will also drop off a disc of the scan for Dr Jotte to check out before we get the report. (I will have them fax a copy of the report to Dr Jotte this time, instead of waiting for me to take him one).

I need all the prayers you can say right now--from everyone. After seeing the great report from the CAT scan, I was on cloud 9. I guess I have to be glad there's new testing all the time, to back up what we have had for years.

I probably won't be updating anything between now and then, unless something happens. Dr Kogel did say to contact her immediately if I had any new symptoms or problems. I am praying like never before, that I do not have to see her sooner!!

Have a wonderful Spring everyone - and again - thank you all for your prayers and concern.

Until May!!

Love you all,

L, M & E

Sunday - February 18, 2007

We went to see Dr Jotte last Tuesday and went on a roller coaster ride all day.

We were encouraged by an offer to participate in a study for maintenance chemo with the drug, Alimta. Dr Jotte did warn me that I would be in for the second fight of my life to get Kaiser to agree to send me out of network for labs, scans, etc. Well, Kaiser said NO. I was told how to appeal and that it was possible they'd change their mind based on the facts I could provide in the appeal and being able to do the scans, labs and meds through Kaiser, to cut down cost to them.

OK, round ONE down.

In the mean time, Dr Jotte's clinical trial RN, Karen, called to tell me the study was a double blind study, meaning some patients get a placebo and some the actual drug, and Dr Jotte said he did not want me to take the chance on a placebo so I could not be included in that study. As a kicker, Eli Lilly, the drug mfgr. would not allow me to have Kaiser draw labs, nor do the scans.

BIG FAT CRAP!!!

So, we're all looking for another study I can qualify for and that Kaiser can have a hand in.

On another note - - - I had a chest CT scan and brain MRI done on Monday and Wed evening Dr Menter called me with the results of the CT scan. The MRI had not yet been read. Basically the tumor has, according to the report, melted away. It is at best, a sliver along the chest wall. Thank you God is all I can keep saying. He (Dr Menter) also told me he nor Dr Kogel (when she comes back from maternity leave) would deny any viable request to participate in an outside study. He also suggested they (Kaiser) could give me Taxol in a maintenance dose. It hasn't been used much for lung cancer in a maintenance dose, only Ovarian cancer, but because I had great results during treatment from it, it might be worth trying. I will really have to consider the side effects versus the possible benefits before I give them any kind of answer.

I think I'll wait until after I have the PET scan on March 5th and see Dr Jotte between then and my appointment with Dr Kogel on March 15th, to make any decision.

I'll write again as soon as I have any news.

Thank you all for your prayers. They are being answered!!

Love to all,

L, M & E

Friday - February 9, 2007

Well, I'm sorry to say, my visit with Dr Leonard, a radiation oncologist with Rocky Mountain Cancer Center, wasn't very good.

After a thorough exam and review of my CT films, he doesn't think the benefit of Cyberknife would outweigh the obvious risks. Which are, damage to the heart valves and spine.

He spoke to Dr Jotte while we were there and they decided the next course of action would be to make another appointment with Dr Jotte to determine if I'd qualify for one of their clinical trials.

I have that appointment on Tuesday, Feb 13th.

There are 2 experimental drugs in clinical trial right now, Tarceva and Alimpta. It's very likely I'd qualify for either, since there is now, no other course of treatment available to me.

Both of these drugs are "life lengthening" drugs, not cures. But heck, that's what the bottom line is anyway!!

There's a chance Kaiser may have one or both of these trials going on, and if so, I may not be accepted into an "outside" study. At which time - I blow my stack if Kaiser doesn't accept me. To date, they haven't even offered me the possibility of participation.

So, now the prayers are focused on qualifying for one of the studies that Rocky Mountain Cancer Center (Dr Jotte) has going on.

I'll update following my appointment Tuesday.

Please keep up the prayers.

Love to all,

L, M & E

Tuesday - January 30, 2007

I am very happy to say that hope has been brought back into our lives.

We went to see Dr Jotte at Rocky Mountain Cancer Center, again today, to get his opinion on my treatment to date, and to get his thoughts on the future.

Bottom line is - it's not near time to "throw in the towel". Quite the contrary. Now it's time to exercise any and all forms of secondary treatment to compliment the great results from the chemo. There is palliative chemo treatment in clinical trial with a drug called Tarceva. Rocky Mountain Cancer Center has this trial going on now. There's also a possibility of Cyberknife treatment. This is a laser beam of radiation that blasts tumors like mine that are impossible to remove surgically and too risky to treat with conventional radiation. There might also be a possibility that  surgical removal of an affected lymph node in the lower diaphragm may be an option. To do this surgery would reduce the "stage" of my disease from a IV to a III. MAJOR difference in longevity.

We left my entire chart with Dr Jotte. All notes, test results, reports, films, CD's, etc. He will review it all, consult with a surgeon and his radiation oncologist and present my case to the Tumor Board Conference next Tues morning, Feb.6th.. He'll call me if he has any news before next week. He basically told us if there are any options, he'll help find them. I have total faith and confidence in him. If there's a way to keep me around, he'll be the one to find it.

Then the real fight may begin. That is, to get Kaiser to pay for the treatment he thinks will work. I'll have to have really good facts going in. I doubt that will be a problem.

Please keep us in your prayers.

We love you all,

Liz, Mike and Emma

Friday - January 27, 2007

Rats!! -

We had the big evaluation today of the CT Scan upon completion of  the Phase I chemo (6 sessions).   We had anticipated a reduction in tumor size and would have liked to have seen a disappearance completely.  We were leaning a little bit toward the disappearance idea because Liz has been feeling so well.  Short of breath and a little neuropathy, but all consistent with the expectations.  We were hoping all this meant the the primary and residual tumors had been "whipped".  The initial reduction and subsequent resizing showed significant results from the chemo, so the decision to complete the sixth chemo treatment seemed to be the strongest and best course to  eradicate this cancer.

The results gave the hard facts that the tumor still lives, and will some day rear it ugly head.  It may reappear in the lung, but may also metastasize in another area, including the liver or the brain.  There is not a time line, but 10 months to 24 seems to be a standard lasting time.  We sportsheads know that all records are made to be broken (and broken, and broken...).

We're working on a quick vacation.   It's been a hectic few months and somehow we have to find time to take a break and absorb this.  I think a couple of rounds of golf (riding in the cart for Liz) and relaxing a little would be very good therapy. 

There's a future appointment for a MRI of the brain in mid-February.  We'll keep you posted.

Please keep up the prayers.

Love Ya all.

Liz, Mike, Emma

Sunday - January 14, 2007

Well, it's been awhile!! A lot has happened since November.

I went to see the radiologist and had some additional tests done. The results were not what we expected. Although the main tumor had shrunk, considerably, it was still positioned directly over my spine. Dr Sohayda decided that since I was having positive results from the chemo, he would not risk almost certain paralysis by doing radiation. This was a let down in that the combination of treatments has a more positive reaction on the cancer. BUT, I was not willing to be cured of cancer and in a wheelchair for the rest of my life. SOOOO - back to my oncologist.

Dr Kogel went on maternity leave, so I saw Dr Alex Menter. It was determined after my visit with him, that I should have the final 2 rounds of chemo. There's not a lot of statistics that weigh the risks and benefits of 6 rounds, but with no other option,... I had no choice.

I completed round 5 on Dec. 4th  with no complications other than a decreased platelet count from round 4.  My final round was scheduled for Dec 27th. My sister and her 3 grown kids, Mark, Julie and Jenna, came out on the 26th from Illinois to be with me for the last one. It was wonderful having them here. The kids went skiing and Joan and I did nothing. Just like a vacation should be. They were here over a week during the 2nd snowstorm. It was great.

Round 6 went off without a hitch. A few of my labs were low, but not enough to stop the treatment. The nurses all sang "Hit the Road Jack" and blew bubbles when the last bag was just about empty. Of course, as emotional as we are (my family) we all cried. I have to say, the nurses at Kaiser have been nothing but wonderful. All of them.

Last weekend I started feeling really tired and easily out of breath. I was also bruising easily and had pretty constant nose bleeds. I called the nurses who ordered some lab tests on Tues the 9th. Sure enough, my counts had BOTTOMED out. I had NO infection fighting white cells and no platelets.

Neutrophils were 0.8 and platelets were 69,000. They put the fear of God in me to be as clean as possible and be very careful not to cut myself or fall. Constant hand washing, no hanging out in public and calling them no matter what time of the day or night if I developed a fever.

I had them re-drawn on Thurs and they're on the rise. YEAH!! My white cells are still below low end at 1.1, but they did go up. Platelets were also up to 77,000. There were several counts that were off on the first draw, but they are all rebounding. I've developed neuropathy in my hands and feet, but that should get better with time.

I have a CT scan on the 19th and my labs re-drawn then.

I'll see Dr Menter on the 26th to review the CT scan and see where I go from here.

Hopefully, I'll be discharged for awhile and Mike and I can head to Florida for a few days. We both need to get out of this cold!

So, I'll write again after I see the Doctor.

Please keep up your prayers. They have definitely worked.

Love you all,

L, M & E

Monday - November 13, 2006

Round 4 of chemo is down, maybe none to go.

Dr Kogel is sending me back to Dr Sohayda, Radiation Oncologist, to re-evaluate me for radiation therapy. She is very pleased with the chemo results and based on the shrinkage, the tumors may be able to be "zapped" with radiation, to "FINISH THEM OFF".  It was originally thought that radiation wasn't going to be an option with a stage 4 diagnosis, but the chemo has really worked better than expected.  It's great to have another weapon in this fight to go along with the hopes and prayers.

My appointment with Dr Sohayda will be Wed. Nov. 29th.  He will make a decision at that time if we should go right in to a radiation regimen, or do one or two more rounds of chemo first.  I'd like to do the radiation I think just to give the chemo a break.  They prefer you have no more than 6 rounds of the drugs I've had.  I will keep my chemo appt on Dec 4th, just in case there is any problem doing radiation. I can always go back and finish off the last 2 rounds of chemo.

There are a lot of options for the future, but I'm thinking positive!!

I'll write again after the appt with Dr Sohayda, or sooner if there's any news.

Please keep up the prayers - they're working!!

Love to all,

L. M & E

Monday - October 23, 2006

Yesssss!  This was the day we've been waiting for.  All of the prayers, hard work, good medicine, God's love and what ever else, came together today for some great news.

My appointment with Dr Kogel brought some of the best news I could have ever hoped for. She had the report from the PET scan done last Tues and the results are as follows:

1) Large mass, upper left lung has diminished in size from 4.9 X 4.1 cm on  8/30/06 to  3.8 X 2.8 on 10/17/06. Standard uptake (amount of radioactive glucose dye the tumor absorbs) was 13.7 and is now 4.1.

2) There is a left anteromedial pleural-based nodule (darn good thing these Doctors know what they're talking about!!!) has diminished in size and uptake from the prior study, now with an uptake of 1.7 and previously 4.4.

3) Three additional small nodes had uptake of over 50% less..

The one node Dr Jotte had questions about had not changed in size but had in uptake. I will be quite anxious to hear his opinion on this. Seems to Mike and I that he was expecting it NOT to be cancerous if it didn't change.

Would this be great news - You bet!!! It would re-stage me from a 4 to a 3. I will not get my hopes up too high on this until I talk to him.

The chemo was uneventful. That's also good news. I has 3 veins blow so I had to get re-stuck 3 x's, making the drip about 6 hours instead of 4 to 5. Long day.

I will have a replacement Dr after my next appt and chemo, Nov 13th. Dr Kogel is going on maternity leave. She has scheduled a 5th round of chemo for me on Dec 4th and an appt with her replacement, Dr Alex Menter. He, like Dr Kogel and Dr Jotte are University of Colorado residency trained. He's pretty young so I like that about him also. Not set in his ways!!!

Dr Vaughn brought me lunch and stayed with me while Mike went to work for awhile. I sure enjoy his company. We have always been more like great friends than boss/ employee. I think we're better friends now that I don't work for him! He's also a Detroit Tigers fan and I am a die-hard Cardinal fan, so we're having a lot of fun with the World Series!! A dollar a game and 5.00 on the series. I sure will hate to take his money!!!

Mike and I moved last weekend so I haven't had any extra time. I can't stand boxes all over, so I've kept myself very busy unpacking. We have more living space but no basement and no storage, so I'm doing a lot of discarding. YES, I, Liz Davis, said that word and it's the truth. Shocks me too, as I read it!!!

Well, that's all for now.

I'll update if any additional info comes along.

Please keep up those prayers. They must be working!!

Love you all,

Liz. Mike & Emma

Tuesday - October 3, 2006

I have to share this news with EVERYONE.

 I had the chest x-ray done this morning and took the CD by to have Dr. Vaughn look at it for me. We both stared at the picture in disbelief. The radiologist had marked the chest tumor at 2.9 cm. That is a reduction of nearly 34% from the initial reading on August 11.

This evening I got a call from Dr Kogel's nurse, Paula, to tell me there was a marked reduction and Dr Kogel was VERY happy with the results. About an hour  later, Dr Mortenson, my Pulmonologist called to congratulate me on the terrific results after just one round of Chemo. Her last words before she hung up were "Go celebrate, this is fantastic news".

 I am in disbelief but happier than I can even think or say.

Between the "self-destruction" of the tumor in my head, prayers and drugs, I just might get the upper hand on this damn thing faster than expected.

Love to all,

L, M & E

Monday - October 2, 2006

Well I went round 2 today and, as with round 1, there were no problems. Unless you count the nurse sticking through the vein and my hand bruising!!

I saw Dr. Kogel prior to the infusion and she agreed that it is a good sign, even after only one treatment, that the pain I've had since March, has basically disappeared. Very good news as far as I'm concerned. She OK'd a repeat chest X-ray, just to see if there is any visible change in the main tumor. I'm just curious, since that's really the only test I can "read" without a physician! My lab tests were all "just where we want them" according to Dr Kogel, so that was good news too.

She also ordered a repeat PET scan.  I suggested it be done on the 17th, so it would be read and transcribed prior to my next appt and infusion on the 23rd. I also had another agenda for doing it on the 17th, I can get a copy of it to Dr Jotte so that he can have his radiologist read it on Wed, the 18th , at Tumor Board.

We asked her about some reports we read that added a third drug to the two I'm taking. There were some great results with the 3. Unfortunately, they will not work with my cancer, squamous cell. All of the drugs they use as a 3rd treatment cause bleeding. With my cancer, that is the absolute last thing we want to happen. So, I stay with the 2 drug cocktail for now. If, or I should say when, the tumor shrinks down to nothing, they will talk about adding some radiation. But that will be a very serious discussion, and not for awhile yet.

My hair is coming out in handfuls, so it's buzz time, then scarves and wigs. I figure I'll get a few wigs and be a blonde one day, a redhead another and whatever the next! Hey, why not?? Can't do it in real life so I may as well do it now.

Dr Vaughn brought me lunch from the Cone Zone and stayed with me all afternoon. They have GREAT chicken salad sandwiches. Denise (owner of the Cone Zone) sent me a "medicinal" dish of chocolate ice cream. How did she know??!! Mike went to the office so he could do payroll - FAR more important than sitting with me.

I have to say, I'm a very lucky lady. I have a lot of great friends and a whole lot of support.

I would have a very hard time doing this without all of your support and prayers. I hope you all know how much I appreciate each and every one of you.

On a note totally off the subject - we sold our house and we're going to be moving the middle of this month. I freaked out at first, but it's good I have something else to dwell on besides me!!

Well, not much more to write for now.

I'll post the results of the x-ray as soon as I get a copy.

Love to all,

L, M & E

Tuesday -  Sept. 12, 2006

Well...I've been "drugged"!   It went a lot better than I had imagined. Neither of us slept real well last night, I suppose in anticipation.

The "immediate reaction" that can come when the drug is introduced was non-eventful, and the drip "step-up" process began.  The social worker came over to chat (he had some great support groups we can check out) and it distracted us for the first 1/2 hour to 45 minutes or so, and we didn't notice the end of the first 42 drips nor the increase to 100 for the second drip. The drips increased by 50, every 30 min until the max of 225 was reached. Then it was a waiting game for the bag to empty. The Carboplatin followed the Taxol and that drip lasted about 30  minutes , followed by a rapid flush. Total time was about 5 1/2 hours from arrival. It wasn't as hard on me as it was Mike. I had a nice cushy recliner, a warm blanket and a pillow. Mike, on the other hand, had a hospital "visitors" chair. Next time we'll bring him a whoopee cushion!!

I had a fantastic nurse, Kally. She spent a lot of time with us, going over any and all aspects of treatment. She made sure there would be no surprises, before, during  or after the treatment.

So far, I have to say, Kaiser has been good to me. They have stepped right up to the plate and provided first line drugs and treatment. I'm being VERY optimistic this will continue.

I did call and leave a message for Dr Jotte (per his request), as to what happened today and when I have follow-up appts. I asked him to let me know if this was not standard protocol. I hope I don't hear from him!

Dr Vaughn came up after lunch and spent the afternoon with  us. He gave Mike a molecular biology class. I learned way more about cancer cells, their reproduction, division interruption and destruction, than I probably wanted to!! But it put a perspective on what was actually happening inside me.

So, now the wait begins. Praying every day the drugs stop the growth and begin the destruction of the cancer cells. There are a few side effects to be on the look-out for, but nothing I can't live with - no pun intended! Flu-like aches and pains (mostly in the legs) may occur on the 2nd or 3rd day and last up to a week. Depletion of blood cells, red, white and platelets usually begin around day 7. They should replenish themselves without intervention. Temps have to be taken regularly and charted for reference.

My next appt is Monday, Oct 2. I see Dr Kogel prior to infusion, to review the labs I'll have drawn on Fri, Sept 29th. I believe we'll also discuss what test they'll repeat (PET or CAT) and when.

Up to this point, we've been on the chase, trying to get a handle on the cancer. Now, it has really happened and it feels like we've quit running. The fight is now up to the drugs---with a little help from me (and Mike right beside me)!

We'll post any updates if or when they occur. Hopefully there won't be anything to write for a couple of weeks. Don't take it personally!!

We love you all and thank you for your prayers.

Love ya,

L. M & E

I

Monday Sept. 11, 2006

Chemo education started today in preparation for the the first doses Tuesday.  It will end up being a 5-6 hour ordeal with an IV drip.

The facility is great.  Twelfth floor with a great view of downtown Denver and the mountains in the background.  There are about 30 chemo stations around the perimeter of the floor overlooking the city.

They showed a video that gave us some insight on what we'll probably experience and some things to be on the alert for both during and after the session.

Liz is trying hard to hold it together, but in her own words is "?%#@ing freaking out!".  She'll add to this update tomorrow night.

We thank you all for your prayers.

Love you all,

L, M & E

Saturday Sept. 9, 2006

Well, it's been a pretty tough 24+ hours. I guess I'm still trying to absorb all that happened in the past 2 days. From "dragging their feet" to "making it happen so fast" kind of threw me a bit off base.

I've tried to read up on the drugs and what to expect, but I know that everyone reacts differently. They make me a bit apprehensive, but I also know it's my only option at this point. Kaiser posts lab results if you have signed up on their web site (which I have done) and the results of the labs drawn yesterday look pretty good. White count, red count and platelets are all in normal range. That will sure help me absorb the drugs better. There are a few that are off, and I'll be finding out tomorrow what they mean.

I am so grateful for the support group of friends and family. I thank each and every one of you from the bottom of my heart.

I have decided that instead of being afraid of what will happen on Tuesday, I need to look at this whole thing as "TUESDAY IS THE FIRST DAY OF THE REST OF MY LIFE !!!

Let's pray it's a long one.

Love you all,

L, M & E

Friday, Sept 8, 2006

BUMMER!!  Today's news echoed with the word "terminal".

Our appointment with Dr. Kogel was the final gauntlet to run, and it turns out that in addition to being the medical oncologist for chemo treatment, she also is the one designated to "shoot from the hip" with the consolidated results.

It appears that the nodes on the diaphragm are invaded, confirming the stage 4.  It looks very unlikely that  radiation would be possible, so chemo alone (and prayer) are going to be the only attack.  Word has it that there's a patient right now that's in her third year with this treatment only, so there is a mustard seed of hope. The average is 6 to 12 months.

Liz is taking this like you know she would.  Interested in the "medicine" of the event, and resolved to the outcome.  "There's still someone out there we haven't talked to that might have a new idea!"  she says.  Do not give up hope.

In the mean time, the chemo introduction will be Monday a.m., and the first of 2 (or 3) treatments will start on Tuesday. Hopefully, the second treatment will be in 3 weeks. The lab counts and bone marrow counts will determine if a second course will be tolerated.

The drugs will be Carboplatin and Taxol.  Taxol is the harshest of the 2. These are the drugs Dr Jotte, and Dr Kogel both have recommended as the premier choice if Chemo will be the sole treatment (at least at first). The infusion takes about 5 hours. Side affects begin 48hrs after and usually only last about 48hrs. This is mostly a feeling of body aches, similar to the flu. There are 2 "for sures", hair loss and fatigue. Nausea and similar side effects are not the norm, but possible.

Love to all,

L, M & E

Thursday, Sept 7, 2006

Today started with a phone call from Dr Jotte. He called to give us his report from his Radiation Oncologist, Dr Carter. There seems to be some question about a lymph node in the diaphragm, that would make the stage a 4 and not a 3. He recommended 2 rounds of chemo immediately followed by or in conjunction with, radiation. His course of treatment would be based on the actual radiation report and films from M.D. Anderson. The area and amount of radiation in 1983, will decide if further treatment is warranted by radiation.

Liz called Dr Mortenson to confirm this possible change in staging and she did confirm there is a possibility, but it would be hard to know for sure.

Today also presented some real eye openers.  Our meeting with Dr. Sohayda, the Radiation Oncologist at St. Joe's, gave us a better insight into the scope of what we're dealing with, by reviewing the PET Scan in detail with us. The tumor has 3 or more locations...the original, and a couple of nodes in the lower lung.  Also, they're paying attention to an area that shows possible invasion of the diaphragm.  This presents an additional dilemma, and seems that the only choice right now might be to ignore this possibility for the moment and proceed with treatment.

They mapped Liz's upper torso at mid chest, and under each arm to get a set point for the radiation.  They insert "tattoos" of permanent dye under the skin so they can define the area of coverage that can be effectively radiated without damaging the aorta, spine, etc., etc. Dr Sohayda will be consulting his colleagues at The Cleveland Clinic and he's already consulted the Chief of Radiation Oncology at the University, for guidance on the course of radiation that may be possible. Hopefully they will start treatments as soon as the medical oncologist settles on the appropriate dosages, etc. of chemo.  So, things have stepped up pace....(interesting how the pace quickens each time a new Dr. views the scans).

The good news is that the appointment to see the medical onc. has been moved to 1:00 p.m. Friday instead of next week as originally planned. So by this time tomorrow, we should have a much better idea what the "program" will be.  We're hoping for the chemo to start the "One" punch, and combine  the "Two" punch of radiation within the next week.  Chemo alone or radiation alone, are not the best courses of treatment. The odds improve greatly with the combination.

PRAY FOR A COMBO OUTCOME!!!

Until tomorrow.

Love to all, L, M & E

Wednesday, Sept 6, 2006

Spent most of this day getting "lip service" from my present care team.  Mostly regarding my request for transfer out of the network. Both Dr Mortenson, my Pulmonologist and Dr Yang, my  PCP, gave me the pep talk about giving Kaiser a chance. They both feel that I had "out of network" in my head with no thought about the care the oncologists at Kaiser could or would give me. Supposedly they have a game plan, so I will go forth with a positive attitude, praying every day that they know what they're doing!!

They all feel that the time involved in getting these appointments is necessary,  and not out of line. Sure feels that way  to me, but I'm not the Doctor!! Just the person living day and night with,  "When can treatment start"?.

Tomorrow is the first part of the treatment puzzle with the Radiation Oncologist. I'll be very curious to see if I can even have radiation, based on my past history.

Well, that's all for now.

We'll let you know tomorrow what the good Doctor has to say.

Love to all,

L, M & E

Tuesday, Sept 5, 2006

Today the fight began. A request for out of network benefits to Dr Jotte at Rocky Mountain Cancer Center was denied by Dr Azar, oncologist at Kaiser. She feels that they can provide the same treatment,( just not as fast)! I don't have an appointment with medical oncology until next Tues, the 12th, to even discuss what that treatment will be. VERY FRUSTRATING. It will be a full month since the initial tumor discovery on Aug 11. The wait is what scares me. Every day I don't get something started, I feel I have lost a day.

I will be going to the radiation oncologist on Thurs the 7th, for his opinion about future radiation treatment. There is a possibility I may be able to have pin-point radiation treatment in conjunction with chemo. I had radiation in 1983, so how much and where I receive now will be the question.

SUPER GOOD NEWS, however, we got the MRI report back today and the cancer has stayed in the lung and surrounding tissue, and not moved to the brain.

There's a long way to go to just get past the administrative crap. Tomorrow will be another day, hard at it.

Thanks for all your prayers.

Love you all,

L, M & E

Sunday, Sep. 3, 2006

We were certainly hoping that some time would pass before Liz started showing signs of weakness, but today she's showing a lot of fatigue.  Good thoughts and intentions, but just slow on the execution.  (I wish this weekend was over, and we could start attacking this damn thing.)

She has a lot of  aching now, and a lot of coughing  and spitting.  And this was something else that was to be "down the road".

I'm trying to work on remaining emotionally stable, but anything dealing with the realization of this is TUFF! 

We're going to finish the day with a little shopping, (after I golfed this p.m.).

Love You All,

M,L,E

Saturday, Sep. 2, 2006

Liz had a long MRI this a.m. in Lafayette and we were sent out with the cd to wait for viewing and analysis on Tuesday.  We had Dr. Vaughn (Liz's ex-boss) meet us at the house, and give his best opinion on the potential that this has entered the brain based on his best reading of the scan.  He said that nothing of significance popped out.  Anything that was showing looked older.

We're taking this as good news #1.

So we're on hold now until Tuesday.  Everyone have a great weekend!!

Luv,

M,l.E

send an email to liz.mike@gmail.com

Friday p.m. - This day has been relatively uneventful. We did look into a few studies that are going on outside of "mainstream" medicine if that's the best route to take. There are great success stories around results with monoclonal antibodies. It involves removing active cancer and white cells (the ones that fight the cancer) and build a vaccine. It was on the news this a.m. about a melanoma patient "cured" with zero effects. (It worked on only 2 of the 15, but hey...we only have to have ONE!!)

We finally heard from our "ray of hope" , Dr. Jotte at about 7:00 p.m. He said that he wouldn't paint the outlook as totally bleak until they've tried chemo and discussed this thoroughly with a radiology oncologist for possibilities of a new "High Dose Radiation" (even after the previous radiation from years ago).

We have to press for a referral out of network to expand our possibilities, so we'll try some things next week.

Liz is doing great. What an attitude. "We've done it before!" she says. So we're hoping to "git 'er dun"!!

Friday September 1, 2006

Today we're going to talk with Dr. Jotte at the Rocky Mountain Cancer Center to evaluate the info received so far.  He's the Dr. for the 2nd opinions.

We're sure he's going to need tomorrow's MRI results, but we want to get his opinion on the degree of invasion, etc.

We'll update later today.

Love,

L,M,E

Thurs, continued:

This is a picture of the mediastinum area where the tumor is located.  It's behind the large aorta and and other heart valves.

8-31-06

This is to provide an update to interested parties on the progress of Liz's cancer.

As you know, we received her diagnosis last night that it's stage 3b, non-operable.

We have an appointment on Saturday a.m. for an mri scan to determine if there's any spreading to the brain.

We appreciate everyone's concern, but it's difficult to reach out to everyone after each ordeal.  We'll make regular postings, but also, feel free to email Liz at liz.mike@gmail.com

p.s.  We'll appreciate your prayers.

Love ya all.

Mike and Liz

This site was last updated 04/16/08