In Response

An anonymous commenter wrote:

"Hi - so can you explain again your need for an allo? Is it because of the GVHD? What kind of expectations are there for you after a successful allo? Also - what are the percentages of people who get GVHD with an auto? Asking because my dad will be going through an auto in the coming months. Waiting on his protein levels to come down. Thanks and i really appreciate your blog - it's a great resource for us. We hope the best for you."

Ok, so here's the response:

My need for an allo is sorta complex. See, I don't have run of the mill multiple myeloma. I have what are called complex cytogenetics. What does this mean? It means that the cancer (MM tumor cells, or plasma cells gone wild) have mutated into a new type of MM cells. In effect, I have an unstable type of MM. Yes, it sounds odd, but that's the net effect of complex cytogenetics. They don't know if the cancer may be changing still, but they do know that I've got a pretty aggressive case of MM. The cancer cells are evolving rapidly into something that can "survive" against the assault of chemo.

So, a tandem-auto transplant (one auto after another in short order) would have been a normal course of treatment for a person with simple cytogenetics. The autos would have potentially put the MM into a quiet stage for some time, up to several years in fact. In my case, it was merely a hope that a single auto would buy me some time and ameliorate the advance of the complex cytogenetics.

HOWEVER, we don't have any clue if the auto knocked down the MM cells. We know that my stem cells reattached themselves to me and have become bone marrow cells again. But since we still haven't done a new bone marrow biopsy, we don't know what's floating around and growing in there nowdays. It will be another 45ish days before a new biopsy is ordered. Premature testing gives unreliable results.

Therefore, I'm in an odd sort of limbo. There's a chance (small) that the auto knocked down all the cancer. Nobody is expecting this to be the result, but we're still hopeful.

And so, I'm planning to do a mini-allo from a stranger. It's my only way to kill the cancer if the auto didn't have the desired effect. Obviously if the auto 'took', then I can cancel/avoid the allo for a while if I want.

So, why the allo and what are the potential outcomes? Well, I cover them pretty well in this copy of a prior post:

"Option 1) - I can stop treatment completely and just let the disease consume me. Result: Death within a few short months.

Option 2) - I can stop additional procedures and go on a maintenance program of drug cocktails. Result: Death because of the complex cytogenetics involved with my level of disease. Maintenance has a very very low success rate.

Option 3) - Proceed forward with an allogeneic (allo) transplant from a stranger. This gives three potential outcomes.

3A) - Approximately 1/3 of all allo transplant patients get no GVHD (Graft V Host Disease). These same patients also get no GVT (Graft V Tumor) which is the objective. Result: Death as in 1 and 2 above.

3B) - Approximately 1/3 of all allo transplant patients get severe chronic GVHD, resulting in kidney failure, blindness, combinations of issues, or death. Result: Maybe worse than death.

3C) - Finally, another 1/3 of allo transplant patients get mild to moderate chronic GVHD, resulting in desirable GVT to combat the disease, but also resulting in as much as 1-3 years of continual treatment against the effects of GVHD. These treatments almost all include heavy use of steroids and other drugs. In other words, 1-3 years of what I'm going thru right now."

Hopefully, that answers many of the questions. There is one thing I want to clear up concerning the pseudo-GVHD I experienced with my auto.

First, it's not really GVHD. Graft V Host Disease can really only happen when the donor cells attack the host. Pseudo-GVHD is a misnomer for a condition under which my body reacted severely to the reintroduction of my own stem cells. It's basically an auto-immune reaction to something that shouldn't happen. Apparently, the whole thing is so rare that most people at my treatment facility (a large transplant operation) have only seen a handful of cases in their entire careers.

Mucositis is a virtually absolute side effect of the chemo they give a person for an auto. It's a given and they treat against it even before the process begins. Be ready for it and believe they're right before you try to 'tough it out'. No sense in fighting the inevitable.

Anyway, I hope this clears things up. If there are any more questions, I'll try to respond.