Finding A Match

What's in a number?  On Monday, I turned 60 and on Tuesday I found out that my donor team found 65 potential full matches. It was a day late, but I'll take it as a belated birthday present, thank you very much. I'm not sure how :good" 65 is, but it's a lot more than I expected. When I met with Dr. Soiffer two weeks ago, I remember asking about the likelihood of finding a donor match from the registry. The way I remember his answer is this: If we find seven matches, it's a good chance one of those will work out; but if we only find one, then it's not that likely. So I'm thinking 65 is a good number. 

Regardless of whether it's good (i.e. large) 65 is a pretty amazing number. Maybe it shouldn't be that surprising to find 65 donors when the Dana-Farber donor services team looks through more than 100 different registries in 45 countries. But it seems remarkable nonetheless.

What's been more remarkable to me is the number of people who have reached out -- friends, colleagues, cousins, nephews and nieces, and of course, siblings -- to volunteer their stem cells, to let me know they are already part of Be The Match registry, or to join the registry. I know I'm not asking for someone's kidney, but I'm both amazed at and grateful for people's selflessness. Even if I can't use my friends' stem cells, maybe their joining the registry will save someone else's life down the road.  If you are the least bit curious, I'd encourage you to learn more at Be The Match. 

My brother is also getting HLA typed and there is a one in four chance he will be a match, too. And if he is, then we'll have to determine which is the best option for me. I have to admit that my understanding of the whole HLA typing and matching process is very limited, but it's a question of how many HLA markers (ideally 8-10, I understand) match between me and my prospective donor. (This video from Be the Match is a pretty good explanation.)

All of this means that for now, we seem to be still on target for a late January transplant time frame. We'll know more in a couple weeks. In the meantime, I'm feeling great. I had been making good progress extending my runs and as you may know,  running has always been a good proxy for how I'm feeling. It'  something I've written about many times on this blog over the years, including here (in 2015)  here (way back in 2012!) and here (back in 2014). So that I could "extend" my distance to just shy of 2.5 miles last weekend (even with a sore calf all the way through) was a good sign. 

I'm likely taking a few weeks off running, though, due to the calf injury - not lymphoma related, just an ongoing issue I've had for years. But hoping we'll still get a couple runs in before transplant begins.

A Little Patience

I've been having a hard time finding the motivation to write a new post. And to be honest, I'm not sure why. I think it's because I'm in a bit of limbo right now. We met with Dr. Soiffer's team last Wednesday and we're really just waiting now. 

That seems to be a constant in this topsy turvy world of cancer. Since diagnosis, waiting has been a constant part of the equation. At first, it was the watching and waiting -- monitoring the lymphoma and waiting until it was time to treat it -- and then throughout this whole journey, there's always the waiting for scan results to see if the cancer was growing. And now, we're waiting for a stem cell donor. It's enough to try someone's patience.

Unfortunately, those who know me well would probably agree that patience is not one of my virtues. But that's where we are. 

Waiting to find a donor. Waiting to test a donor. Waiting to get more tests scheduled. (I'm told we'll do a re-staging (i.e, a PET/CT scan) but will not have to do another bone marrow biopsy, which is good.) Waiting to get dates on the calendar. Waiting to get it all started. Waiting to see how I feel when we get it started. Waiting to see how we will cope with the isolation and the infection prevention measures. A lot of waiting. 

Right now, the hope is to get the transplant started by the end of January. But until then, there's not much more to do, but wait. 

A Funny Thing Happened on the Way to the Transplant

Followers of this blog would know, if they checked their calendar, that in about two days time, my Autologous Stem Cell Transplant was set to begin. Monday the 21st I was scheduled to get my port and begin collecting my own stem cells on the 22nd. That is not going to happen. But we have a new plan. We meet next week with the Allogenic Stem Cell Transplant team and begin planning for that. 

Why the Change in Plans?  

Among the many tests I underwent in late October was a bone marrow biopsy to check to make sure there was no disease in my bone marrow. Good news: there was not. But they also do a test known as a Rapid Heme Panel, a test developed at Dana-Farber and Brigham and Women's Hospital almost ten years ago. Using the Rapid Heme Panel, we were able to screen my bone marrow sample looking for genetic mutations. They found some, including two mutations that could lead to problems down the road with my bone marrow - problems that I'd like to avoid, like leukemia. Now, just having the mutations, particularly at the relatively low percentage that they were found, doesn't mean that I'm headed for leukemia. But it does mean that if the stem cells continue to accumulate these mutations, it will certainly increase the risk of bone marrow issues down the road. 

So now we return to the difference between autologous SCT and allogenic. In an autologous SCT, we would use my own, already damaged stem cells, which would be removed from my body and re-infused after high-dose chemo was done to rid by body of any lingering cancer cells. The question I often got when people asked about the transplant was: Do they do anything with your stem cells before they re-infuse them? And the answer is: no. Short of freezing them and then thawing them to be re-infused, they don't do any "treatment" on the stem cells. Not these days anyway. 

So if you're following along, you might see where this is going. If we went forward with an auto SCT, the cells that would be re-infused in me would be my own genetically damaged stem cells, which would likely create more damaged stem cells and increase the risk of bone marrow issues in the future. 

In an allogenic stem cell transplant, however,  I would be using a donor's healthy stem cells to replace my own. That is now our plan.  

Good News or Bad?

The new favorite question these days is: Is this good news or bad? I'd be lying if I said I wasn't a bit panicked when we found out the news on Monday. Allogenic transplant is a more involved process - isolation is more like 100 days instead of 30, and the infection precautions last longer, too. There's also risk of graft versus host disease. But the upside is that the possibility of a cure - of both the aggressive lymphoma and the original follicular lymphoma -- is potentially greater. 

What's also important to consider is that if we didn't do this test -- and it wasn't even around when I was first diagnosed 11.5 years ago -- we would have gone through the whole auto SCT process for it likely not to have worked. And that would have been devastating. 

One of the biggest challenges is that I had been getting my arms around the idea of the transplant; I had been preparing for it mentally; getting my life ready for the 2-3 months of procedure and recovery. I was ready to get it going and get on the other side of the process. 

Now that's all on hold and I'm back in planning mode. I'm not sure how soon it will start but I doubt it will be for a couple months as we need to identify a donor among other things. I hope to know more when I meet with my Allo SCT team on Wednesdays. In the meantime, the boys are coming home from college starting tomorrow, and instead of having chemo by myself for Thanksgiving, I'll be having turkey with all the trimmings with my family. That's pretty good news for now.

 

--michael 

Ps -  If you're interested in being a stem cell donor, not necessarily for me, but in general, you can learn more at Be the Match.

 

Testing 1, 2, 3, 4...

Echocardiogram, EEG, Lung volume study, Chest X-ray, 14 vials of blood and a PET/CT scan. That was last Thursday. It was a lonnnnnng day but a necessary one. And most importantly, all results look good with the PET/CT scans remaining clear.  Or as the report reads: "No evidence of FDG avid lymphoma." It wasn't as exciting as the scans from five weeks ago because we kinda expected this, didn't we? But clear scans are clear scans are clear scans.

Friday was the bone marrow biopsy - not as scary as it sounds but I'm not lining up to do it again anytime soon. We won't get official results for a week or two, but at this point, we are not expecting to find anything that would prevent us from going forward with a Stem Cell Transplant.

Why do a stem cell transplant?

I feel great and all indications are that I am free of lymphoma. And so the question that I hear most from friends is something like: If you are cancer free why do a stem cell transplant? Well, what you can see at the imaging level is not the same as what might be lurking at the cellular level. Lymphoma is a cancer of the blood; it doesn't originate in any one part of the body like, say breast cancer or prostate cancer. It's not really clear where it originates, and so while it seems like I'm cancer free, there could be cancer cells lurking undetected. So the whole stem cell transplant process is the best chance of getting rid of that, and putting the lymphoma into a long-term remission.

The prospect of doing a stem cell transplant was always an option, but there's an important set of events that brought it from the background to center stage. For 11 years, I've had follicular lymphoma, which is considered an indolent, or slow-growing lymphoma. So slow-growing that in 10-plus years, we treated it with chemo/immunotherapy only twice. We would generally start talking about treatment options when scans would show lymph node/tumors growing past 3 cm. That would take years. 

What happened is that some time in 2022 my indolent lymphoma transformed into diffuse large b-cell lymphoma (DLBCL) with a little bit of double-hit lymphoma.  DLBCL is not indolent. No, no, no. It's aggressive. And fast growing. In about six or seven months since my scan in late 2021, my little tumors had become "bulky" with an accumulation of masses measuring 17 cm. 

Aggressive lymphomas tend to also respond well to treatment, as evidenced by the response to the four rounds of R-CHOP. So now the goal is to knock out the aggressive lymphoma and either return to the good ole days of follicular lymphoma, or maybe cure the follicular too, while we're at it.

What is the SCT process like?

So the R-CHOP is done. The testing is done. Now we wait. And, no, that's not the hardest part, although I do wish we could start tomorrow and get it going. I think the actual process will be a little tougher than the waiting. We start with getting a port placed in an out-patient procedure. That's followed by stem cell collection - also an out-patient  process similar to dialysis or platelet donation (the latter of which I used to do before I was diagnosed). When we have enough stem cells collected (2 million at least), they freeze them.  

From there, I'm admitted to the hospital for six days of high-dose chemo. Then my stem cells are reinfused back into me (after they've been thawed, thank you) and we wait for my blood cell counts to recover. In total, I should be in the hospital for about three weeks. Assuming I feel well enough, visitors are permitted in the hospital (as long as they are gloved and masked). 

Once I'm discharged from the hospital, recovery at home is a long process. For the first two weeks at least, I'm still on a neutropenic diet. That means I can't eat anything that we don't prepare at home. Nothing from restaurants or anyone else's kitchen. No GrubHub. No neighborly casseroles. It's all processed food and stuff we cook here. And for about 2-3 months, life in the bubble continues:  no visitors, avoiding stores, crowds and people in general. 

That's the plan. My hope is to do a daily blog post once the whole process starts -- even if that's just a quick sentence or two. But there's still three weeks to go before we get to that point.