Steve vs. MCL II officially got underway on Friday with a round of chemotherapy at University Hospitals' Geauga branch of the Seidman Cancer Center.
Fortunately, it was uneventful.
Paulette and Jackson joined me for the seven-hour drip (it was actually about six hours) that included pre-meds (a heavy dose of Benadryl and some anti-nausea medications and a steroid) and the following chemo drugs: Rituxan and Bendeka and a shot of Velcade. They probably should have given me a couple extra doses of liquid for hydration considering Matt Burt forced me to drink beer the night before.
I'll return on Monday for more Bendeka and Velcade. That appointment will last only about an hour and a half or so. Then, on Friday I'll head back for a shot of Velcade. We'll repeat that series the following week and then I'll have two weeks off, although I'm not sure we'll continue with this chemo regimen.
After discussing my options with many people--including the transplant experts, Dr. Friedman, a patient advocate who coincidentally specializes in transplants and CAR-T, and my friend Amy, whose husband has followed a similar path as mine--we have decided to follow the CAR-T path.
For me, it really comes down to the quality of life both during treatment and after as I recover.
Ever since 2009, when I first learned of autologous and allogeneic stem cell transplants, I was horrified of the allo transplant. That's the one that uses cells from a donor, which then brings with it a host of other issues related to my cells fighting off the donor cells.
CAR-T also has its downside but I truly believe those side effects are minor compared to what I could experience with an allogeneic transplant, which I'll use as a last resort to prolong my life.
As I mentioned before, the transplant doctors were leaning toward the CAR-T for me because they knew of my hesitation regarding the allo transplant. That said, they both said they'd choose the allo if it was their spouse, but that was based on the unknowns with the CAR-T.
That left me even more confused and anxious about the process, so I emailed Dr. Friedman, who always puts my mind at ease.
I told him where I stood after my meeting with Dr. Boughan and Dr. Kampoor. I preferred CAR-T but would certainly go with the allo transplant if he thought that was best.
He said, "I think we should leave Allo for if the other options don’t work. I like the idea of CAR-T and that is what I would choose for myself or my family, 100%."
That's all I needed to hear and I emailed him back with the authorization to proceed.
The one catch with the CAR-T therapy is the disease has to be present in order for it to work. That means my initial chemotherapy will be used to slow down the symptoms that are present but just enough to give me some relief.
That means I'll likely only go through one or two rounds of chemo before cell collection takes place later this month.
The procedure is very similar to the autologous transplant I went through 10 years ago.
First, I'll be hospitalized for a day or two to collect the T-Cells. It took two days 10 years ago to collect my stem cells, so I assume it will be about the same this time.
Once the cells are collected (induction), UH modifies them in-house at its own lab. Other hospitals use a commercial lab to modify the cells. Because UH does it in-house, the turnaround time is about a week to 10 days faster, so I'll then return to the hospital for the infusion (consolidation).
The consolidation stage will take anywhere from two to three weeks, depending on how long it takes for my immune system to recover.
I was hospitalized for a month during my autologous stem cell transplant. During the first week, I received high-dose chemotherapy that knocked me on my ass. That was the hardest week of my life.
I'll receive chemo again before CAR-T therapy but it will be less intense than before.
The time following consolidation will be spent closely monitoring my blood counts and side effects.
What happens in the lab? The best way I can explain it--and this is based on the doctors' explanation to me--is they take my diseased T-cells and modify them to become cannibals. They are trained to kill their own. Once infused, they go to work finding and killing other cells that carry the disease.
Those cells have a finite life span, which means they'll work for a couple of months and then die off, just as other cells do. We'll know quickly if the CAR-T therapy works for me.
Once I'm discharged, I would then go into post-transplant care, which will include daily blood counts and other evaluations. That means I'll be at the hospital downtown almost every day for 60 days.
Those cells have a finite life span, which means they'll work for a couple of months and then die off, just as other cells do. We'll know quickly if the CAR-T therapy works for me.
Once I'm discharged, I would then go into post-transplant care, which will include daily blood counts and other evaluations. That means I'll be at the hospital downtown almost every day for 60 days.
Dr. Boughan mentioned Hope Lodge as an option to keep me near the hospital. UH requires it's CAR-T patients to stay within one hour or 40 miles of the hospital. We leave just under 37 miles and 50 minutes away, so I may be able to stay home during that time. We'll talk to the doctors to confirm that.
Again, I'll do what they suggest but it sure would be nice to sleep in my own bed or chair at night.
Will it work?
That's the million dollar question.
Dr. Robert Dean of the Cleveland Clinic, who is at the forefront of Mantle Cell Lymphoma and CAR-T research, said this:
"We do not yet know about the curative potential of CD19-directed CAR T-cell therapy for MCL. Certainly, for other lymphoma histologies, such as large cell lymphoma, where there is already a larger clinical experience and longer follow-up, some patients are achieving durable remissions and are being cured through that approach. I am very excited to see how that is going to pan out with additional experience from the MCL trials using that treatment approach."
CD19 is short for B-lymphocyte antigen CD19. It is an essential element in B-Cell development. According to clinicaltrials.gov, as of January 2018, over 300 completed and ongoing CAR-T clinical trials were registered all over the world. About 150 of those targeted CD19 because it is the most important molecular biomarker for CAR-T immunotherapy.
"Incremental advances in frontline treatment approaches have improved outcomes, but patients still face a high rate of mortality at the time of relapse," Dr. Dean said.
Enough on CAR-T. I'll share more about that as time progresses.
Friday's chemotherapy session was long but simple.
They hit me pretty hard with the Benadryl, so I dozed in and out for much of the morning. I had planned to do some work while I was sitting in the chair but I couldn't keep my eyes open. Not sure that was the best time to write a story about the Chagrin Valley Conference Valley Division track championships from Thursday, so that was put on hold.
As I mentioned before, the chemo itself was much less intense than what I received 10 years ago. There was a concern with the Rituxan since my first experience with that sent me into a case of the rigors and an extra night in the emergency room.
Because the disease has returned, my Rituxan infusion was considered as a first infusion, so we had to take extra precautions to avoid the negative side effects. It certainly added some anxiety to the morning but it went well.
With less intense chemo we're also expecting less intense side effects.
Already, I'm a bit off balance (no jokes about the mental imbalance...we're strictly talking about my physical capacity here), very tired and already I have the onset of bone pain.
As many of you know, I did pick up my medical marijuana card last week to help offset many of the side effects.
Aside from a few recreational experiences, I'm a very inexperienced marijuana user. I'm not sure it's going to help but it certainly is worth the try.
One of the products I purchased at the dispensary is called AC/DC. It's dry leaf with a high CBD content and very low (less than 1%) THC. That's what I'm using to offset nausea and some of the stress and pain.
Unfortunately, the bone pain left me very uncomfortable before bed and I went to the product that contains 21% THC.
That helped me to fall asleep, but I woke up at 3:40 a.m. and couldn't get back to sleep. I hopped into my recliner and read from The Rebel by Albert Camus and I also used that peaceful time--if I don't count Paulette and the dog snoring--to self-reflect.
In all honesty, I'm scared. I'm anxious. I'm stressed. But, I do have a much more optimistic approach to this second dance with Cancer than I did 10 years ago when there were so many unknowns.
This morning, my body is weak. I shake a bit when I walk. My hands tremble. I'm tired. But, I'm going to do everything I can to win each day.
It helps to have Paulette at my side. She's so mentally tough--even though she won't admit it. She is so strong and seems to have endless energy to get the kids where they need to be while at the same time working her ass off in her job and now, once again, caring for me.
Last week, she sent me a song to listen to. The allergies were working overtime as I listened and read the lyrics.
She is a soldier--definitely a much better one than I was.
They hit me pretty hard with the Benadryl, so I dozed in and out for much of the morning. I had planned to do some work while I was sitting in the chair but I couldn't keep my eyes open. Not sure that was the best time to write a story about the Chagrin Valley Conference Valley Division track championships from Thursday, so that was put on hold.
As I mentioned before, the chemo itself was much less intense than what I received 10 years ago. There was a concern with the Rituxan since my first experience with that sent me into a case of the rigors and an extra night in the emergency room.
Because the disease has returned, my Rituxan infusion was considered as a first infusion, so we had to take extra precautions to avoid the negative side effects. It certainly added some anxiety to the morning but it went well.
With less intense chemo we're also expecting less intense side effects.
Already, I'm a bit off balance (no jokes about the mental imbalance...we're strictly talking about my physical capacity here), very tired and already I have the onset of bone pain.
As many of you know, I did pick up my medical marijuana card last week to help offset many of the side effects.
Aside from a few recreational experiences, I'm a very inexperienced marijuana user. I'm not sure it's going to help but it certainly is worth the try.
One of the products I purchased at the dispensary is called AC/DC. It's dry leaf with a high CBD content and very low (less than 1%) THC. That's what I'm using to offset nausea and some of the stress and pain.
Unfortunately, the bone pain left me very uncomfortable before bed and I went to the product that contains 21% THC.
That helped me to fall asleep, but I woke up at 3:40 a.m. and couldn't get back to sleep. I hopped into my recliner and read from The Rebel by Albert Camus and I also used that peaceful time--if I don't count Paulette and the dog snoring--to self-reflect.
In all honesty, I'm scared. I'm anxious. I'm stressed. But, I do have a much more optimistic approach to this second dance with Cancer than I did 10 years ago when there were so many unknowns.
This morning, my body is weak. I shake a bit when I walk. My hands tremble. I'm tired. But, I'm going to do everything I can to win each day.
It helps to have Paulette at my side. She's so mentally tough--even though she won't admit it. She is so strong and seems to have endless energy to get the kids where they need to be while at the same time working her ass off in her job and now, once again, caring for me.
Last week, she sent me a song to listen to. The allergies were working overtime as I listened and read the lyrics.
She is a soldier--definitely a much better one than I was.
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