Yesterday was our meeting with the transplant Doctor. Seemed to go fairly well. We were hoping to get a consult with UCSF, however they can't get Tom in until maybe tomorrow, however Dr. Carroll wants Tom to start treatment Friday. Given that Tom still has some leukemia cells in his marrow, it's important that we don't waste time and get him treated so that they do not reproduce.
Disclaimer: Warning! This blog contains A LOT of information! Read at your own Information Overload Risk!
The Plan
Tom's to begin this new regimen of chemo Friday. It's for five days, however unlike the chemo Tom's been doing... it's much stronger so it will require a 3-6 week hospital stay. In that time, we are typing his brothers in hopes that one of them is a match. If they are not, they automatically utilize a donor registry.
We have had an amazing response of people willing to donate marrow (which by the way is simply giving blood and you do it at a lab locally to you); However, marrow typing and donating is much more complicated than blood typing, as simple to give, but finding a match is much more intricate. He said that a match is about 1 in 1 million. With having two brothers from the same parents, there is about a 40% chance one of them will be a match. Uncles, aunts, cousins, parents, are much less likely and will most likely only come up as half of a match at best, he said... which is definitely not good enough. Dr. Carroll was saying that when utilizing the registry, people of English (British isles in general) decent, have a much more likely chance of finding a donor than any other ethnicity. Apparently the match will also most likely be some far distant relative (thought that was interesting and sort of made more sense as to why typing all of our friends and family isn't likely to yield a match). So that's the shortened (believe it or not) version of why even though everyone is so willing and selflessly offering to come to our aid, we can't accept.... I saved you the chromosomal 6 explanation... you're welcome, ladies and gents.
Anyhow, after this first chemo thing, we are hoping that he will be in full remission (please enter that into your thoughts and prayers... TOM IN FULL REMISSION) and if he is... we just have to hope that we have a donor lined up. The perk, aside from similar immunity, of having a sibling be a match, is that they will be much more compelled to get it done in a timely fashion... apparently with registry donors, it can sometimes take up to two months to get the marrow stem cells.
SO if we have a donor lined up and ready to go and Tom is in full remission after this new round of chemo... we will do the transplant straight away. This is another 5-7 weeks in the hospital.
If we are awaiting a donation, they will do more chemo to keep it in remission. If he didn't achieve full remission with the first round of chemo, we will also do another round of chemo until he is.
After the transplant... after the 5-7 week hospitalization, he will be discharged. At this time he will need someone (and they specifically said this) with him 24/7 which means that I certainly will not be going back to work. Secondly, suggested that we would need a backup caregiver (taking applications if anyone is interested), so that I can go grocery shopping or go out or whatever... as he cannot be left on his own.
For the year or so following this transplant, he will be closely monitored for rejection as well as relapse. As far as relapse goes, it apparently happens within the 6mo-1year after the transplant.... if you can make it past 2 years of close monitoring and finding nothing, you're cured. That's right, cured. If a relapse did occur, sometimes they will infuse a very small amount of the marrow stem cells again to initiate what they call Graph vs. Leukemia to get rid of that last remaining stuff.
To Clarify
The chemo regimen that Tom was on before, Hyper CVAD, there is a 20% chance that it won't work (as it hasn't)... it doesn't mean that there's anything worse about Tom than someone else or that there is no hope. Secondly, chemo for ALL (tom's leukemia) is usually most effective in children as far as curing them. Though superficially it's the same disease.... young children (ten and under) vs. teens and adults with this disease, it's very different. Young children often obtain a cure through chemo with ALL, however most commonly now, adults have bone marrow transplants... and if they do not, there is about a 40% chance of relapse through doing chemotherapy alone, and often times it's then too late for them to do the marrow transplant. So seemingly, we are now on the correct track. There is still a small chance that this may not do the trick, but then we take train c..... which he didn't tell us what that is, but hopefully we won't need to cross that bridge. So that's what brings us to doing the transplant.
I think that this basically covers everything discussed in our consultation yesterday. So Tom begins this process tomorrow. Again, a big giant thank you to all of those who so willingly offered to come to our aid and donate if need be. :)
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