Summary - PET CT showing hot spot activity, 2 years out from an autogenic transplant and radiation. Not possible to do a biopsy to verify that is what it is because of where the hot spot nodes are located. So we are in the collecting information stage -
Bone Marrow MD in the morning - giving me the run down that you WANT to have a graft vs host disease (GVD) when you do the allogenic transplant (bone marrow from someone else). This happens 1/3 of the time with a sibling match and 2/3 of the time when it is not a sibling match. Of that portion of the time that you get GVD 1/2 of it is moderate and 1/2 of the time it is severe. Since you only want to have moderate GVD, the higher chance of severe in the allogenic transplant is not ideal - but then you do have a higher chance of getting GVD as well.
Then we drove into Karmanos to meet the MD who is doing clinical trials. He ran numbers for us. The only thing that is proven to cure what I potentially have (thank you for you - you bright white lymph node right next to the biggest blood vessel system in my body) is an allogenic transplant. All of the clinical trials are ways to push back that potential because some patients don't want to do it because of the mortality rates.
(Did she just write the phrase mortality rates?)
Yes, yes she did. Because the doctor said it.
What no one had yet told me at the U of M is that there is a mortality rate associated with allogenic transplant (perhaps due to the severe portion of that 2/3 from a nonsibling match). 25-50% depending on a whole bunch of factors.
So that is why people bounce between clinical trials for years and years, fudging along with 1 year on one drug, 2 years on another drug, etc...because even if you get a response from those clinical drugs - the medical world does not congratulate you and tell you that since your scan is clear that you are all done. Instead, they congratulate you and tell you that now it might be time to bite the bullet and do the allogenic transplant.
What a world we live in.