Little did I know...

That over 16 years ago when I started my blog, I would still be posting updates on not only one cancer but two.  My posts have become less frequent because there are long periods of time where there is not much to report even though I am still having frequent doctor visits and things may move around slightly.  But I really don’t think it is of much interest to have me report, ‘I pulled my hamstring and can’t play golf for a couple of weeks’ (This is for my kids, who will be the only ones who will get this joke 😊)

In my last post, I was wondering what I was going to do with my CLL as I was relapsing once again.  I turns out the new drug I wanted was approved by the insurance company and I was able to start it at the end of June.  This drug called Jaypirca is supposed to work when you have developed a mutation and become refractory (when a treatment is less effective or stops working) to another drug in this class.  So far, the results are positive, but this drug works very slowly, so the immediate effects I have had from other drugs is not apparent with this one.  The hope with this drug is that it will keep my disease stable, which it seems to be doing.  This month my blood numbers finally came into normal range, even though they are at the high end of those ranges.  This is the way the drug works, slow and steady.  Since I still get blood tests every 4-6 weeks, we can keep a vey close eye on these numbers to see if and when it may stop working.  In the clinical trials for this drug (on patients like me who have failed most all approved therapies and have really bad genetic markers) the average time to relapse seems to be around 18 months, so that would put my expected target for relapse around December of 2024.     I have already begun to look at subsequent clinical trials that may fit my profile and I think there are at least two that seem like a possibility and are being carried out close to me.  The best thing about this drug is that it has almost NO side effects.  If there are any for me, I am not sure what they are.  We will keep a close eye on this.  It has the easiest of the 6 different treatment regimens I have been on.

On the Prostate Cancer side, this is where it gets really interesting and a bit more confusing.  In my last post I indicated that my PSA had decided to go up once again and I needed an MRI.  So, I got the MRI In September and that indicated I needed another biopsy to determine how much it had grown or spread.  Using knowledge I have gained dealing with my CLL for almost 24 years I decided to ‘interview’ two doctors, one at Hoag and one at City of Hope (who actually used to be my Urologist at Hoag).  Based on those discussions I chose to go to City of Hope for the biopsy because they use a protocol that has less chance of infection.  Well, that didn’t turn out according to plan.  Three days after the procedure I developed a RARE infection.  I say RARE because I was the first one to get this infection at the new Lennar Cancer Center (new City of Hope facility in Irvine).  So, I was excited of course to be the FIRST one, but my excitement was tempered by having to deal with the infection.  After that cleared up, the results came back and they identified two cancerous lesions, which is basically the same as the biopsy done in 2021.  To confirm the pathology, they once again sent the results out to Johns Hopkins for a second review.

 I just want to mention for those who need a prostate biopsy; include this option in your decision-making process.  The people at Hopkins have pathologists that are the World’s leading authorities on reading prostate biopsies.  I think they wind up downgrading slides in many cases, which likely means if you had relied on the original biopsy results you may have entered into unneeded treatment.  This actually happened to me.  Back in 2021 the original read said I had two cancerous cores both Intermediate grades.  After the Hopkins review it came back as only one core and it was low grade.    

All of this takes time.  I  also had one other test done called the Decipher test, which measures the aggressiveness of the cancer and the chance that it will metastasize over time.   At my December appointment he told me he wanted me to have a PET/PSMA test so they can actually see more of the prostate under radioactive contrast and see what lights up. I had my appointment with him this week and we really discussed what my options were and how we should proceed.  The PET/PSMA scan did light up three areas on the Prostate, which means that there are actually more areas than first thought, but still not something that seems to be alarming.  We discussed the following options.

1. ·         Surgery-  He did not recommend it because of my age, I did not like it because I would have to stop my CLL drugs for about two weeks and I didn’t want to take the chance I would have a surge in my CLL while off the drugs.
2. ·         Focal therapy – where they freeze or laser the affected areas.  He did not think this was an option because there are lesions on BOTH sides of the prostate, which is more difficult to do with this kind of therapy.
3. ·         Radiation – This is definitely an option.  City of Hope has a new radiation procedure that only takes 5 visits because it is MRI guided.  There is also another one that is two weeks.  Both of these are considerably less that the standard 5-7 week daily protocol. 
4. ·         Active Surveillance –This is also an option and where we just keep on monitoring it with PSA tests, MRI’s and biopsies. 

So here is what I decided.  I am going to make an appointment with the radiation oncologist to have him explain the radiation treatment protocol and get his opinion on whether radiation at this point is the best option.  But at this point, I am leaning toward Active Surveillance.  Here is my logic, although it might be flawed.  There really has not been a major change since 2021.  The Decipher test that shows the aggressiveness came in EXTREMELY low.  The scale is 0 to 1.0.  Mine came in at .13, which my doctor said means that there is almost no chance that it will metastasize over time. So that would mean I would die WITH prostate cancer, and not because of it.  I will have another MRI in about 3-6 months and then maybe another biopsy in a year. 

I am still doing patient advocacy work working with the CLL Society and will be flying to Orlando in February to speak at a corporate pharmaceutical event sharing my patient experience.

On the family news front, we lost the matriarch of the Barden family in October.  Donna's mom Bette, passed away at the age of 103.  She had fallen and broken her hip about a month before and that was pretty much the beginning of the end.  She came to really enjoy her great grandchildren over the last years of her life and we were glad that all of them got to meet her before she left us.