The year of volatility
MissionBTB: Year 4 of the journey, a roller coaster ride
The Immunotherapy did not work for me as shared in my last blog. 2022 started with me being in severe pain as my cancer was growing unchecked over the past 6 months. So, I was back on a chemotherapy regimen with the hope of getting some much-needed disease control and relief.
These past 11 months of 2022 have been a wild journey — some good times dotted with some really challenging months where I spent a significant portion of time in bed. I have gone through multiple treatment changes again this year. This blog will bring my journey and health status to the current, and from here and out, future posts will be more on a real-time basis.
Let’s live life!
Having taken a break from my professional life to focus on health and family, my game plan was to live life to its fullest. Monika and I love to travel. Besides experiencing amazing new places or revisiting our favorite destinations, we can spend 100% quality time together, not distracted by anything else. With life’s uncertainties, maximizing our time together has been a priority for both of us. Travel is also an amazing way to feed my love for photography!
I began working with a pain specialist in January. Managing pain due to tumors meant masking it so I could go about my life without addressing the root cause of pain. I was back on chemotherapy to get rid of the root cause. After getting some pain control in the first couple of weeks of Jan with opioids, we decided to take a few local/regional trips. I could modulate my pain meds to support the physical demands of the trips and travels, but we needed to get out!
We started out small… weekend trips to Tahoe and Yosemite in January, then a 4-day trip to the amazing Redwoods (Humboldt County) in Northern California in late Feb. The serenity of all these places has an amazing calming effect on the soul.
Walks in the groves of the redwood forests probably helped me heal as much as my treatments — mental peace is foundational for any treatment to be effective.
By this time, my chemo kicked in and brought some control to my disease as measured by PSA and systemic pain reduction. I was back on Taxotere — the same chemo medicine that was used for my very first treatment in Dec 2018. As it had been 2 ½ years since I was on that chemo, rechallenging my cancer with that drug was a good strategy.
- In 2019, six cycles of this drug reduced my PSA by 1000% (from a normalized value of 100 to below 0.1). The chart is included later in the blog.
- In 2022, four treatment cycles reduced PSA by about 38% (from a normalized value of 186 to 116) before it started to rise again. So, a mildly positive response, but still helpful.
With the disease getting slightly under control and pain meds to support my desire to be active, we made grander travel plans. In March, we went to Alaska for a week — a trip timed to maximize the chance to see the Northern Lights! We followed that with a 10-day trip to France in April. Fortunately, we could make both these trips and had a phenomenal time.
Watching and photographing the Aurora Borealis’ sky dance was a once-in-a-lifetime experience — something we had always wanted to do. Staying out in the cold (-15F to -20F) and waiting for the northern lights to show and managing the camera in manual mode with 2-layers of gloves was a chilling experience… but what a beauty it was… just magical!!
Here are some more pics of the spectacular Aurora Borealis show we saw. Another intriguing experience in Alaska was taking dips in the natural mineral hot springs at Chena Hot Springs. I had heard of the healing effect of such hot springs AND experienced it. I was off the opioids and other pain meds for almost 2 ½ months afterward.
Was that coincidence, or did the hot springs help me with healing? I’ll never know for sure… but it was a therapeutic experience.
In 2021, we had to cancel our 25th anniversary trip to France due to some health issues Monika was dealing with. Though it happened a year late, we had a marvelous time. It was an active trip where I averaged >18k steps/day. After that, I made a solo trip to India in May to see my parents and family. Fortunately, I could physically handle all my major travels in Spring — something that felt so out of reach back in January!
The Beast expanding its footprint — a painful summer
By early June, my bone pains returned, specifically in the pelvic area. By mid-June, any movement that put pressure on the pelvic area was very painful, including sitting down, getting up, and getting in and out of bed. I was grimacing and it showed! I was back on opioids and other painkillers, but things kept getting worse. July got progressively harder. The pain had moved from the pelvic area to all over my legs. I was spending a significant portion of my time in bed and missing all social engagements on the calendar.
On Monday, July 11th, I woke up with debilitating pain and could not get out of bed. Monika decided to get an emergency Lumbar MRI as the pain’s signature was that of a nerve and not just bone. MRI showed that the tumors in my vertebrae were bulging and putting pressure on my spinal cord nerve endings below the L1-L2 area of the spine, causing distressing levels of radiating pain thru my body.
This was a very frightening development, sobering both Monika and me on where we were in my journey. If the tumor continued that path, an attack on the spinal cord could lead to long-term paralytic effects that would destroy my quality of life.
Tears, lots of hugs, and silent moments of just sitting together… within 24 hours, we had intense discussions with medical teams:
- Option 1: Spinal surgery to clear out the tumor and release pressure from the spine
- Option 2: Radiation treatment to see if that can kill the tumor and decompress the spine
Just the thought of going thru a 5–7 hr. emergency spine surgery was very depressing. Radiation was not a proven sure shot treatment for such a condition, but the radiation oncologist at Kaiser Roseville assured us to try radiation before any intrusive surgery. He crafted an aggressive high-volume, high-intensity treatment using VMAT (Volumetric Modulated Arc Therapy) technique, covering sacrum, iliac, and L2-L5 spine areas. I started that 5-day radiation treatment on July 13th.
We were fortunate to have tremendous family support with us during this incredibly challenging period. My in-laws were visiting from India for the summer to help us. Their calmness and caring were God-sent. My younger sister who was visiting me took care of me like a baby. It felt like these wonderful people were planted here for the summer because someone knew we would need this support.
Never underestimate your need for support. Caregiver fatigue and anxiety is real. Even caregivers need support as they work their way through the peaks of difficult periods.
Radiation saves the day!!
It can take a few weeks to start seeing the positive impact of radiation. The therapy actively works for weeks after the actual treatment is done. Fortunately for me, very soon after my treatment ended, I experienced relief in my radiated pain and started a much-needed healing process. Overall, the radiation treatment did an excellent job, much better than even my radiation oncologists had thought (kudos to my docs!). Avoiding spinal surgery was a major mental relief. By end of July, I started to regain some physical functionality. By mid-August, I was starting to feel normal again with meaningful (but careful) physical activity and a significant reduction in pain meds.
While radiation is a very targeted therapy and we used it to address a very specific problem, I still needed to be on a new systemic treatment. We were hoping for the availability of the new Lutetium (177Lu-PSMA-617) based radio-therapeutics treatment that the FDA approved in March 22, but that was still not available. My medical panel decided to start me on the next more aggressive chemo (Cabazitexal) to bridge me till we could get started with the Lutetium treatment. I had my first infusion of this chemo (I label it chemo3.1–3rd chemo treatment, dose 1) on July 27th. The second half of July was all about hitting my body with aggressive radiation and chemo.
Where is my energy?
Aggressive radiation and chemo3.1 did a wonderful job of giving me relief and helping me get back on my feet, literally. My PSA also dipped a bit… dropping from 136 to 107 on the normalized chart. While I tolerated these treatments very well on the surface with minimal side effects, these treatments did suppress my bone marrow. And what that meant was that my Hemoglobin (Hgb) dropped drastically — from 10 to 7g/dL. The normal Hgb range for men is ~13–16g/dL, and I was stable around 10 for a few years as all the treatments had already lowered my Hgb. But now to go from 10 to 7 was a drastic shift down. This had nothing to do with my food intake, which was very good overall, but with the bone marrow’s inability to make Hgb. This is a known side effect of many cancer treatments. Pelvic bones are one of the big contributors to bone marrow/hemoglobin production; the high dose, high volume radiation targeting that area of the body impacted my Hgb.
Here I was, physically pain-free, but now with low energy, low endurance, and easily tired. I would take multiple naps during the day… before lunch and then again in the late afternoon… why not! Chemo 3.2 was scheduled for Aug 17th. We skipped it. My body needed time to recover from the bone marrow suppression. Symptom and physical health wise I was doing better, so skipping a cycle made sense. I further cranked up my intake of iron-rich foods to help with this recovery, but the primary cause was the factory slow-down of Hgb production, not the intake of the raw material.
The Lutetium treatment is finally here!
Where do we go from here? I got the green signal to get started on Lutetium by September. Our long wait was over, and I could finally see a path forward. Sept 16th was the start date for my first treatment. Between now and then, my job was to do everything to improve my bone marrow/hemoglobin situation as this treatment could cause further suppression. If these parameters fall below a threshold, the dose of the treatment may have to be reduced or completely stopped.
To date, Novartis’s US factory in New Jersey has not come online (address quality issues that halted the production), so the Lutetium drug (named Pluvicto) is still coming from their factory in Italy. This is a radioactive drug, with a 6.6-day half-life. Drugs routing is as follows: Italy factory production release, ship to Novartis NJ factory for quality approval by FDA, then ship to my hospital in Sacramento and be delivered to me within 5 days!
Everything must be timed and managed with precision… the factory ships the drug for a specific patient and specific appointment. Due to shelf-life issues (and current low volume usage), there is no local inventory in place to just schedule a new patient with a short lead time or accommodate changes in schedules.
177Lu-PSMA-617 is a combination of radioactive Lu-177 combined with a carrier PSMA (prostate-specific membrane antigen) material that seeks prostate cancer cells. The PSMA agent carries Lu-177 to prostate cancer cells, where its radioactivity (beta ray emissions) can harm and destroy the cancer cells/tumors. The benefit of this therapy is that it is targeted (not personalized) compared to chemotherapies which are a blanket chemical obliteration of all fast-growing cells in the body. It is like sending small heat-sensitive torpedoes all over my body to seek tumor cells and destroy them… that’s why there is higher hope of better systemic disease control from this treatment.
This treatment is hailed as one of the greatest success stories in the history of nuclear medicine. It was researched via trials all around the world. Australia, Germany, and many European countries approved this treatment as early as 2019 (vs. 2022 in the US), and subsequently, it also became available in Asia. That’s why this treatment was high on our priority for a few years, and we spent many hours researching and considered going outside the US for it if it was not available in the US.
Finally, here we were, Sept 16th was set for my treatment to start. No treatment for complex diseases like cancer is highly effective for 100% of the population. Sensitivity to PSMA targeting varies from patient to patient. If the nuclear-medicine torpedoes cannot seek the target with high efficiency, treatment effectiveness will be lower.
Treatments are delivered 6 weeks apart to give the body time for recovery in between — I had treatments on Sept 16th and Oct 27th. The next one is scheduled for Dec 9th. I have tolerated the treatments well so far, but it may take multiple cycles to get indications of treatment effectiveness (fingers crossed). PSA is not a solid and linear indicator of treatment effectiveness, in the beginning, Scans are more definitive in showing how things are going, and my latest scan a few days back is stable since the start of the treatment. My last few PSA readings have increased since the treatment started… but I am ignoring them and am not worried about them at the moment.
Approaching 4 years of my journey
Nov 26, 2018, was the date of my diagnosis, soon approaching 4 years. This has been a relentless journey so far, as I have been under treatment all this time, and the outlook now is that it will continue to be so. I am currently on the 7th line of systemic treatment, with 3 radiation treatments in between. The spinal cord impingement that I experienced in the summer was downright scary — the thought of the nervous system getting impacted, and its implications are very unsettling.
I am so grateful to my medical team for helping me get out of that pickle, and I am physically back to reasonable functionality (other than low hemoglobin-related limitations). But it will be amiss if I don’t point out that I have started to feel disease fatigue in the past few months as well.
My new normal has been to live happily and peacefully with the disease… but the fact that every day there is a reminder that I am a patient does cause fatigue!
Mind yearns for the old normal — being able to live life without so many physical limitations, enjoying a wide range of gourmet foods and cuisines, working on compelling new technical and business problems, and not worrying constantly about current and future treatments.
Due to tumor metastasis in my bones and the density of the tumor in the pelvic area, I cannot do physical activities that are moderately aggressive — like biking, yoga, skiing, harder hikes, running, etc. My physical activity is limited to walking and easy hikes. Treatments have significantly decreased my muscle mass, reducing my strength and endurance. I have changed my diet to vegan and mostly home-cooked meals (and that’s for the better). It does not mean I don’t miss the gastronomic pleasures of the past at times. To sustain my journey, I allow myself some pleasure meals… but my mind yearns for just simple old normal. I have no regrets about leaving my professional life for now as my priority is family and health… but I do miss the rush and engagement of that life.
By expressing it here, I am hoping to get this mental fatigue out of my system so I can continue to thrive and maintain my positivity, as the journey ahead is still going to be long and trying. For now, I am thankful to everyone around us for all the support. We are still smiling and standing up after these four years! After the dreadful summer, we are beginning to plan our travels and get back to living life to the fullest.
Portugal it is!!
My journey through blogs so far (in chronological order)
My Ongoing Journey with Stage 4 Prostate Cancer: Mission Beat the Beast (MissionBTB)
Why am I finding my cancer diagnosis so late?
Creating a Personal & Professional Support System
First treatment and first win… but too short-lived and humbling!
Can I eat my way out of cancer?
Will Immunotherapy do the magic?
