New Chemo Drug

After originally being denied by the insurance company and the drug manufacturer, we appealed to the insurance company and were finally approved for the drug Tarceva.  Tarceva is a daily oral pill that is a targeted therapy for one of the mutations found in my genome study.  It is typically approved for lung and pancreatic cancer.  I began taking Tarceva on August 12th.  That was also a chemo infusion day which we are now increasing to an every-other week frequency.

Tarceva does have some side effects.  The most debilitating that have come to me so far is extreme fatigue.  (This is in addition to the fatigue I have been dealing with already from chemo and have talked about before; it's just more of that same thing.)  Since Tarceva works best in an acidic environment, I've also been dealing with severe heartburn.  When I contacted the oncology nurse about this, she worked with the pharmacist and they recommended taking Pepcid a couple hours after the Tarceva.  That has worked quite well.  The third side effect is a rash.  This has demonstrated itself like a very bad case of acne on my nose and chin.  There are hundreds of whiteheads that sometimes break and bleed a little.  I've been prescribed an antibiotic and some cortisone ointment.  We'll monitor for five days and decide then if we need to reduce the dosage of the Tarceva.

We saw the oncologist again prior to my chemo infusion on August 26th.  Dr. Gilcrest recommended that we talk with a pain doctor on the supportive team at Huntsman Cancer Institute.  While the pain across my abdomen is not severe and can be managed okay with Tylenol and an occasional Lortab pill, it is constant; it is always there with every breath.  We decided to go with the oncologist's recommendation to see a pain doctor, and Dr. Jill Sindt was able to talk with Kath and me while the infusion was dripping in.  

Dr. Sindt really knew her stuff.  She'd had studied my chart thoroughly beforehand and took the time to talk through the options, answering every question in a kind way.  I felt like she was really trying to understand and relate to all I was going through.  After discussing our options, we decided to do an outpatient procedure on Monday morning for a nerve block.  They will sedate me and, under X-ray, give me two shots through my back that will actual kill the appropriate nerves.  It should last 3-5 months before new nerves grow back.  They use the recent CT scans to locate the appropriate nerve bundles and success is high.  When I asked her if those nerves are needed, she said that they certainly are in a healthy person; they are the early warning signs of trouble going on.  In my case, however, they already know there is trouble and what is affected, so that warning system isn't really needed.  This will reduce the pain by at least 50% and pills can be used to manage the rest.

Anyway, things continue to move along.  It seems like a lot of treatments, and I'm too fatigued to do a whole lot but just go through them.  It's a rough patch that we're going dealing with right now, but I'm confident we'll get through it as the Tarceva and chemo continue to overcome the cancer.

I've had a lot of phone calls and visits over the past several days, as well as friends and neighbors bringing food and good wishes.  I'm continually reminded of family's and friends' kindness and support.  All the short visits, calls, e-mails, text messages, thoughts, and prayers really do help to keep my attitude in a positive realm.  Your service really does make all the difference.  Thanks so much.

More Chemo and Scan Results

Since the last post we've been doing chemo on a reduced schedule of one week on followed by two weeks off.  It doesn't give me so much fatigue although it is still present to some degree.

About a month ago I started getting the pain in my abdomen again.  Seems like it has gotten a little worse and now I can feel it most of the time.  I'm also getting lots of mucous and phlegm in the back of my throat.  I imagined that both are caused by the small tumors called adenocarcinomas in my lungs.  The literature says that they are the cause of increased mucous.

With these new symptoms, the doctor ordered another CT scan which we did on Wednesday of this week.  The results were mixed. In terms of the lung lesions, some are smaller, some are unchanged, and some are larger compared with the last scan in mid-April.

Other areas, such as the adrenal glands and liver, were really no different.  And there were no tumors in new areas. 

That means there was nothing on the scan which accounts for the pain in my abdomen or increased phlegm in the back of my throat.  The blood tumor marker continues to decline which adds to the "mixed" nature of the results.  The results just weren't very conclusive. 

We decided to add an oral chemo drug and see how that goes. They need to work with the insurance and maybe the drug company to get this approved since it is never on the formulary.  Others have been successful in getting the drug company to provide it without charge when insurance won't budge.  It might take a week or two to find out. The other option was to increase chemo frequency, but that has the downside of doing blood transfusion every month or so as well as increased fatigue which really drops the quality of life overall.

We do chemo again next Friday.  When we questioned the doctor about other options that he might have up his sleeve, he seemed pretty hesitant to put me in the clinical trial for immunotherapy.  They are in a "pause" with that right now doing some intermediate analysis of results.  Because of my 40+ year history of ulcerative colitis (an auto-immune disease), he feels that the side effects might be really debilitating and not worth it.  We might talk more about that.  The doctor also wondered if we would want to go for a second opinion about treatment, but I'm not sure it would yield any new options since we're already going to one of the premier treatment centers in the country.

In terms of the burn on my abdomen, we had our last visit to the Burn Center about six weeks ago.  We did the twice daily dressing change for a couple of weeks and now I just put lotion on it twice a day to keep it from drying out and cracking the new skin that's growing over the wounded areas.  So that is slowly getting better.  It still looks pretty bad since it is bright red. That doctor said it might take a year to blend back into my skin color.

As always, we want to thank everyone in my vast support system for their thoughts, prayers, e-mails, text messages, phone calls, and acts of service on our behalf.  I know there are many that I do not even know about.  This means a great deal to us and I know it helps a lot for me to keep a positive outlook even though things seem a little bleak.  Thanks so much.

Delays in Chemo

It's been a month since the last update, so it's time to let you know how treatment is going.

We've gone to the burn clinic several times so they can monitor progress and change treatments as needed.  We've been changing the dressing twice a day to keep it from drying out (which would slow the healing process).  They did inform us on the last visit that it is getting better; it's just healing slowly because of the chemotherapy.  I probably still have a month or two before it is healed enough to stop doing daily dressing changes.

Going into my regularly scheduled chemo infusion day of May 6th, I could tell that things weren't good because of some extreme tiredness and a little bit of dizziness.  Sure enough, my bloodwork showed I was anemic again (low red blood cell count).  The doctor decided to hold off on chemo and give me a unit of blood instead.  It made me feel a lot better.  

We returned a week later for more bloodwork.  When the doctor saw the results from those tests, he was surprised that the numbers had bounced back so much in just a week.  He said that he had been pretty worried that a downward spiral was starting, so the rapid improvement was a real relief.  He gave me another week off of chemo.

We saw the doctor again on May 20th.  The bloodwork that day looked good again.  The decision was made to greatly reduce the frequency of the chemotherapy treatments to keep the blood counts from getting so low and to help me just generally feel better.  We will now do one week of chemo and then have two weeks off.  We'll do a scan in a couple of months to make sure this is enough to keep the cancer in check.  Keep your fingers crossed.

Thanks for all the support you give in so many ways.   I appreciate the phone calls, text messages, e-mails, prayers, and good thoughts.  They come from everywhere, including some from outside of the country. They really do help me to stay more positive about this situation.  Thanks again.