Well here is the scoop. We went ‘up north’ (Mayo) on Sunday to expect to hear about Margaret’s stem cell transplant (SCT). For background for those who do not know a SCT is simply put, they give you growth hormone and collect a ‘bunch’ (read millions) of your own stem cells from your blood with aphaeresis (separating out different components of the blood by basically using a cream separator) and then give you a BIG (lethal dose) dose of chemo and then give you your stem cells back to regrow your bone marrow that they just killed with the chemo. It turns out not to be lethal since they give you your stem cells back, they have studied this you know. It really doesn't help their numbers is they kill off all the patients. But I digress, this resets your immune system among other things and may do a number on her amyloid production – the goal. Margaret has already collected her stem cells years ago while we were there over Thanksgiving.
As my mother used to say, Man plans and God laughs. Well there is apparently a bit of concern because she had PTLD (Post-transplant lymphoproliferative disorder) which is caused by a virus. If they knock her immune system to zero with a SCT then what is to say that the lymphoma will not come back and without an immune system we would be in a bit of a pickle. So the result is that two of our hematologists (amyloid and SCT) want to talk to hematologist number 3 (PTLD). Who would have guessed that we would have not one, not two but three hematologists… wow, we are special.
Well wouldn’t ya just know it that hematologist number 3 was in Rio visiting his son and will not be back until next Wednesday at the earliest. So they three blood docs are going to have a pow wow and discuss what real life experience they have with giving someone who has had PTLD a SCT (yes, it is acronym soup). We should hear something towards the end of next week. If the whole SCT is out then she will just do chemo. She is not in a crisis mode yet as far as the amyloid goes but they don’t want to get to a point where it is a crisis.
Apparently, based on some history and experience, people who have cardiac transplant with amyloid may tend to have issues with there digestive tract which is what they think is her issue. Apparently for some unknown reason the amyloid hits the intestines not that we got rid of the previous play toy (her old heart).
On top of all this steaming pile of good news last Thursday Margaret’s mother passed away. It was a busy few days, her mother passed away on Thursday, Sunday we left for Mayo, Monday night back home and Wednesday the funeral. It has been a bit of a long week. Oh yes and tonight she is hosting her book club which should be a good distraction for her.
Someone at work told me recently that we are getting to the age where beer and wine just won't do it anymore, break out the martinis! I am beginning to understand that, now if only I drank... oh, a new hobby for me, thanks Beth!
Someone at work told me recently that we are getting to the age where beer and wine just won't do it anymore, break out the martinis! I am beginning to understand that, now if only I drank... oh, a new hobby for me, thanks Beth!
That is all the news we have for now, as far as I know.
I am so sorry about Margaret's mom. As you know, its very hard to lose your mom. Hugs to her. Also hate you all having to go through continued problems. My prayers and thoughts are always with you.
ReplyDeleteLove you all.
Auntie