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
