Senior Moment

After waiting 18 months to get Ibrutinib (now called Imbruvica), you would think that picking up my pills would be the foremost thing on my mind.  So last Friday I went down for my 1 month checkup and blood draw.  My blood numbers are going the way they expected them, and the doctor visit showed improvements in both my lymph nodes and spleen size.  So after getting the good report we decided we should get some lunch on the way home and we walked RIGHT PAST the pharmacy.  So at 3:30 that afternoon (after I was home) when it was time to take my pills I realized that we had FORGOTTEN to pick up my next month's supply.  I frantically then called back down to La Jolla and asked what I should do.  I knew I couldn't get back to the pharmacy by the time they closed, but when I called them they said not to worry about it since I would be back on Tuesday for my monthly IVIG infusion.  They told me that 3-5 days off of the drug is not critical because it is such a slow acting drug.  Whew! 

Enough of the sob story.  I am actually feeling pretty well.  No major side effects, just a lot of small irritating ones.  None of them are as bad as some of the side effects I have had in my past treatments, so that is a blessing.  The strange thing about this drug is that it causes your white blood count to rise.  That is really counter intuitive.  You would think that since CLL is mostly a disease where the white count goes up, that you would want your counts to go DOWN?  I started this treatment at 80,000 (remember normal is between 5-11,000), and after a month I was up to 160,000.    This means that the white cells that were 'hiding' in these places are being forced out into the bloodstream, hence a rise in white count. This makes some sense because my lymph nodes and spleen have shrunk down to almost nothing. This is pretty much normal for this drug.  Most of the people that I know that are on the drug said it takes about 2-3 months before the counts start to fall. 

My new drug was approved by the FDA for Mantel Cell Lymphoma this month, and is expected to be approved for CLL after the first of the year.  I have been told that this really won't affect me and my access to the drug because I am on one of their trials and they still want to track my progress.  So I guess I will keep getting the drug from them until they decide it is no longer appropriate.  This is especially good news because the price of the drug has been set at $91 / pill, which for me would be about $8,190 per month before insurance.

Last month I did make a trip to San Francisco to Genentech to give a 'patient's perspective' on their drug Rituxan.  This gets a bit confusing.  I am no longer taking Rituxan, but have had it over 30 times during various treatments.  The people at Genentech know of my situation, but for some reason they still think that I can provide some information to their marketing teams.  This time there were over 30 participants that I spoke to and I think they got something out of it.  I also got a tour of their research and development lab, which gives me a greater understanding on why these drugs cost so much. I also had an hour long web interview with a company that is marketing a new CLL drug.  At least I am putting some of my experience to good use.

Being on this drug has allowed me to better PLAN my life.  For the last 6 months I have been trying to figure out what my schedule will be.  Now I know what it will be for at least the next 6-12 months.  That is a relief.  I am now able to visit friends in the desert, to go up to Seattle and visit my family up there, plan another trip to Spring Training in Arizona and think about a River boat trip to Europe next year.  Life is good.

Happy Thanksgiving to all.

It was fun while it lasted!

A week ago I visited Dr. Kipps for my 3 month follow-up.  Since I go down every month for my IVIG Infusion, he had 3 months worth of data to look at.  Unfortunately it looks like I am coming out of remission.  My blood numbers are definitely trending upwards, and he is starting to see my lymph nodes increase in size.  So it looks like I will have to begin some sort of treatment before the end of the year.  End of short report.

This is not totally unexpected.  Because I had all the blood tests, I could see where this was going.  I could also feel the nodes increasing in size.  I always knew it was going to be a matter of not if, but WHEN.  I am a little disappointed that the last Clinical Trial that I was on did not give me a longer remission.  From the time I stopped the Clinical Trial, I got about 20 months of remission.
He wants to see me as soon as we get back from Hawaii, and begin the process of bone marrow biopsies, genetic testing, etc.  After he gets the results of that back, we will sort out all of the trials that make sense and don’t make sense.  Why am I looking at trials again?  Isn’t there anything else that is a non-trial treatment?  The answer is maybe, but probably not.  I have already had 2 different treatments (one twice) and the results have been the same, no long term remission.  I have poor genetic markers, which limits the effectiveness of some of the ‘approved’ treatments.  I have had autoimmune issues with my AIHA.  In 50% of the cases, the AIHA comes back in patients, and is almost guaranteed to return if you use the wrong treatment.  So this limits my choices, and a trial is maybe my best shot.

I feel that the only way we are going to make real headway on curing or stabilizing this disease is to have people enter into trials.  Remember, you can’t get trials just anywhere.  They are usually provided only at teaching and research hospitals, like UCSD, Ohio State, MD Anderson, Mayo, Sloan Kettering and Fred Hutchison.  So you can’t go to your local hematologist and say ‘give me trial 123’.  You can’t even get the same trial at two different hospitals.  They are tightly controlled by the drug companies and the FDA.  Now there is a match made in heaven.  The trial I was on before had less than 50 people in the WORLD enrolled.  One of the most promising ones (that I am looking at) has only 400 people that have taken this drug, and it has been out of the lab for less than 3 years. There are a lot of accusations about the teaching hospitals using people as Lab Rats.  I don’t feel that way.  This is MY choice.  I can do it or not.

Dr. Kipps gave me 4 informational packets on trials that MIGHT be appropriate for me.  We will then have to wait until after the tests to see where I really am.  THEN, I have to be ACCEPTED by the drug company.  This sounds like I am applying for college, or a job.  I won’t get into the details of these trials right now because none of them might pan out and we might have to go to plan B, whatever that is.

I am not as anxious as I was before the last trial.  In general, I know what to expect (although every treatment has its own personality).  I know there will be a lot of paperwork, a lot of tests and drugs. Once again I am trusting Dr. Kipps and God to lead me in the correct direction.  

Life goes on.  Our youngest son Matt and his wife Randi have announced they are expecting.  My oldest son Jeff has announced he is engaged to his long time girl friend Kristen.  Wyatt continues to be a great baby and Aimee and Bryan are great parents.  Sarah is now a licensed CNA and is continuing her education in Acute Care.  My golf index is at its lowest since I began playing (that’s a good thing for you non-golfers).  So for now, I’m not going to worry about any of this, and Donna and I are going to relax in Hawaii.  ALOHA.

Terry