Life at the crossroads, again!
MissionBTB — is it time for hacker’s way?
Yeah, 2023 has just begun, but life is back at crossroads!! Unclear which way now, but I am sure there will be a way!
As expressed in my last blog, I was yearning for some just normal times due to disease fatigue. I managed to get that and had a wonderful trip to Portugal and Southern Spain in December. I tried not to think about my disease and enjoyed just being normal. What a luxury!!
With all the treatments, my hemoglobin has been staying low, leading to a lot of fatigue and anemia. I recently learned the term myelosuppression (bone marrow suppression) that describes this state. Physically, I have been getting by and gotten used to it… more sleep and naps have just become part of life now. I started 2023 slowly getting back to my managed diet and lifestyle as shared in one of my previous blogs (Can I eat my way out of cancer?). After taking more liberties with it through December travel and the holiday season, I needed to get back to a stable and sustainable operating point once again. It is hard to escape the “I am a patient dealing with tough cancer disease” for an extended period.
Lutetium Treatment — Started & Stopped
I started the much-awaited and hailed Lutetium/Pluvicto treatment last September. We had waited for the availability of this targeted treatment for over a year; the hope was that it may do something for me that other treatments have not been able to do — provide systemic and durable control of the disease.
These treatments are done every 6 weeks; I had my 3rd treatment on Dec 9th. By this time my PSA was staying somewhat flat, and scans were stable. But critical CBC parameters like Hemoglobin, Platelets, and WBC were drifting down to marginal levels. So, my 3rd treatment was a reduced dose treatment… an effort to reduce myelosuppression and help the recovery of my CBC parameters. I was hopeful that with all the self-care that I had taken and the reduced dosage, things would improve for me.
That turned out to be wishful thinking!! A few days back, my pre-4th treatment labs showed that my PSA went up by about 14%, but my CBC parameters declined a bit further. It was hard for my oncology team to see the benefit of Lutetium treatment anymore. After much deliberation, we decided to stop this treatment and not proceed with the 4th dose.
All this waiting with so much hope… was all short-lived. The PSMA expression of my cancer is on the medium-high side. That means the Lutetium radioactive smart bombs can easily seek their target, the cancer cells. All they need to do is to explode and kill the cancer cells there. That did not happen for me. It seems like radioactivity had less impact on my damn tough cancer cells but more on my bone marrow. All my tumors/metastasis are in the bones, so it’s hard for the bone marrow to stay protected from these treatments.
This was my 7th line of treatment and lasted only 4 months. The shortest so far.
The reality is that my bone marrow got fried with strong radiation treatment last summer. While that treatment got me back up and functional again after a very painful few months in the summer, it cost me the health of my bone marrow. Every aggressive cancer treatment has its own toxicity. And being on continuous treatments has not given my marrow the chance to recover.
The good news is that I am mostly asymptomatic right now even though the PSA is rising. So, I can perhaps afford a window of time without the next treatment to give my body a chance to recover and normalize. Hopeful!
At Crossroads — which way now?
While I am hugely disappointed with this turn of events, I recognized that I have been surprisingly calm about it. We don’t know what the next treatment or trial is that we may have to jump to. That is a huge uncertainty that could cause anxiety. I have surprised myself with how I am dealing with the situation at the moment, and I have been thinking, Why?
I have been a serial entrepreneur, starting or working at early-stage startups, and even done internal startup stints in larger companies. So, at a professional level, I am used to dealing with uncertainty and ambiguity that do not phase me. Could that mindset be spilling over to my personal situation?
Very early on in my cancer journey, I came across this serenity prayer that has stuck with me.
God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
Are these words subconsciously helping me deal with this ambiguity and uncertainty? Or perhaps a combination of both my professional experience and my belief system?
We won’t know… and it does not matter. All I can say is that I feel fortunate and blessed to be able to stay calm. This has a significant implication for my family as well. Hope I can hold on to this strength, as nothing moving forward will be simple.
Time for Hacker’s Way?
I recently joined a group called the Prostate Cancer Lab. It is a small but amazing community of like-minded patients all dealing with this complex journey, navigating complex testing and treatment decisions. Brad Power, the founder of this group, himself a Lymphoma cancer patient has been able to tame his disease. Professionally he is a process innovation expert. As he was going through his journey and meeting other patients, he realized the need for such a platform.
This platform brings a handful of advanced patients with medical and healthcare experts from various sub-domains for information exchange on cutting-edge research, testing, treatments, etc., to help patients understand future treatment options and pathways. There is a strong focus on understanding the genomic markers of our tumors and finding personalized and/or targeted options for future treatments — hack our way to possible future pathways. While most of the time may be spent on information sharing, learning, and getting ideas from experts, the group can also run a hackathon taking on the problem of a specific patient and try to get collective help and a roadmap together.
This is an amazing group of patients and professionals. I have been drinking from a fire hose since joining this community. While many patients, including yours truly, do a lot of independent research, this community helps us share that in a lot more effective way than various cancer support groups I have observed.
Can I hack my way to the next step? Let’s see!
It is great to do all this groundwork and get industry help to know possible future pathways. But the final decision on the roadmap and immediate next treatment will be made in conjunction with my primary oncology team — they are the bedside physicians who know me and my disease the best.
In the meantime, it’s time for me to focus on keeping my mind and body calm, give my bone marrow a strong chance to recover, and hope the cancer stays quiet enough to keep me asymptomatic for a reasonable drug holiday.
Did I say holiday?
I am currently visiting India to see my extended family and catch up with lots of friends after a long covid caused hiatus. The love and support of my family and friends will keep giving me strength! And maybe it’s time to also look a lot deeper into Ayurvedic treatment options — another hack!
