Tuesday, April 16, 2024

Disappointing, but not unexpected

Even though I usually post about relapsing on my treatment for CLL, this Blog update will be a little different because my CLL is doing just fine.  However, my prostate cancer has decided it wants to get into the treatment game. 

When I last reported about my Prostate journey, I had just had a PET scan which showed 3 areas of concerns.  That was followed up by an MRI.  Using those two tests I finally had my appointment with my urologist at City of Hope on Friday and after some explanation and showing me the PET and MRI results, we have decided that it is time to begin treatment.  I have opted for the MRI guided SBRT (Stereotactic Body Radiation Therapy) treatment.  This treatment is only available at 3 medical centers in Southern California. Because of using an MRI to pinpoint the lesions, it is much more accurate (about 80%) more accurate.  Because of the accuracy there are fewer side effects, and because of the short duration and the higher intensity of the radiation they do not include hormone therapy as a part of the treatment plan which they normally do using CT guided treatment.  Instead of a normal 25–35-day radiation schedule, this one is 5 treatments.  They do this treatment over 10 days.  So instead of 5-7 weeks, it will be less than 2 weeks.  Because Prostate Cancer is another ‘slow growing’ cancer, there is no need to rush into this right now.  I told my doctor I had some upcoming trips in the next 6 weeks, so could we start in June, and he said that was fine.  Yesterday I scheduled the diagnostic testing required to begin the treatment.  I will have the staging MRI and CT on June 4th, with the radiation treatment beginning the next week.  This type of treatment has a very good long term success rate, so my hope is that after this treatment we can put this part of my journey behind me.

Here is another case where finding the right doctor and right medical center is critical to the treatment plan and the success of such a plan.  If I had just done what my first urologist had wanted me to do, they would have done surgery to remove my prostate back in 2021.  As it turns out, this would have probably not been the best approach, and most certainly I would be living with long lasting complications.

I am not asking ‘why me?’ or upset with this news.  I have dealt with a chronic condition (CLL) for almost 24 years.  During that time, I have moved from treatment to treatment getting small reprieves that have to be adjusted every couple of years.  If I had not had my ‘faith’ that there would be options for me when my treatments became less effective, I would have been a basket case.  I feel like I have done my homework, am at peace with the decisions we have made and we are moving on.

On the CLL side, I am still on the drug I started in July of 2023 (Pirtobrutinib or Jaypirca) and I am doing well.  All of my blood numbers are in normal range as of February.  This does not mean I am cured, or even in deep remission because they can still find a small % of CLL using a test called a Flow Cytometry.  But even the amount that they can find is going down because this drug works slowly and it takes time to get it to zero, which it actually may never do.  So I am in what we call ‘maintenance mode’, where you can keep the disease burden low enough that it is almost like it is not there. (But we know it really is there hiding 😊). Another nice thing is that this drug seems to have very few adverse events (that’s technical talk for side effects).  Which I appreciate.

I mentioned in my last post I was going to Orlando to speak with the pharmaceutical company that makes Jaypirca, and that happened.  I spoke to about 500 people at one of their corporate events.  I guess they were happy with me sharing my journey so now they have invited Donna and me to Lilly’s corporate headquarters in Indianapolis for 2 days in May.  I am not sure what the exact program is, but I will be speaking to corporate people and visiting the lab where the scientists are working on new and even more exciting products.  My interaction with Lilly (and especially my contact, Devon) has really been rewarding.  They get to see a REAL patient and I get to tell them what I would like to see in the support of patients. I have dealt with a lot of pharmaceutical companies over the last 24 years, and it seems to me that they are taking a closer look at how their drugs impact patients lives.  Yes, I know some drugs cost a LOT of money, and sometimes it takes an inordinate amount of time to bring these drugs to market, but I can honestly say that without these drugs I would NOT be alive today.

I am also filming a short video presentation to be part of a program to be presented at the next ASH (American Society of Hematologists) in December in San Diego.

If you are wondering why I didn’t just say, OK, let’s start tomorrow when we made the decision to do treatment, there are some simple (and maybe selfish) reasons.  In April we planned on going to Arizona to visit our daughter Sarah and her family and in May we planned to visit our son Matt and his family in Alabama.  These trips have been planned for a long time, and because the doctor told me it is not critical to start right away we decided there is no risk in delaying it by 6 weeks.

I will try to post more often during my treatment just to provide information for the men that may need to make this decision in the future. 

Terry