The whole idea of whether John is in remission or not is just plain confusing. Technically if John was diagnosed with MM right now with an M-Spike of .4 he would have been considered Stage One which is considered indolent or dormant. The amount of cancer in his blood right now is small enough that the Dr. said they would not treat someone coming in with his levels...they would just sit back waiting and watching for that M-Spike to begin to spike up high. But having a .4 M-Spike is not REALLY remission - and even if he gets to .3 - that number merely represents a 90% reduction in the cancer cells. So obviously there is still some cancer present, so maybe it's like a semi-remission. Is true remission the same as being cancer free with a 0 M-Spike? I know, I know, all questions I should ask the Dr. but this is what happens - you go to the Dr. and you write crap down and you think you understand everything. And then a few hours pass and you realize, you really don't have a friggen clue what just happened. At least I know the exact dates of what pills he takes and when. I am becoming whiz with pills.
Moral of this story: Remission for MM is an equally confusing concept and just another thing that sucks about cancer.
Wednesday, January 4, 2012
Good News-Bad News/Moving Forward
It would seem that every Dr. appointment is always good news/bad news. Apparently that is what living with the uncertainty of cancer is all about. So the bad news is that technically John is not in remission because his M-Spike number is still at .4 indicating that Myeloma cells are still present. But the good news is that since he is at .4 we are able to move forward with John getting a BMT. In fact, Buffy the BMT Dr’s nurse called us today with a target date of April 5th. It turns out that difference for John between being stuck at an M-Spike of .4 and getting down to .3 is whether or not he can be part of the clinical trial at Moffitt. He getting down to .3 would represent a 90% reduction of the cancerous cells, which is one of the main qualifying criteria for participation in the clinical trial. He began another 21 day cycle of chemo yesterday afternoon which will be completed via pills again. Then he will be re-tested again and we will find out whether or not he made it to .3 on Jan 31st. Following that he will have to suffer through a 7th cycle during February because he cannot go more than one month without treatment before the BMT. So, HOPEFULLY he will make it down to a M-Spike of .3 in the next two cycles so that he can participate in the clinical trial. The research and treatment of MM has changed drastically over the past 10 years. Performing an allogeneic BMT upon a patient’s first remission of MM is one of the more recent changes in treatment of MM, provided the circumstances for the transplant are perfect. There have only been 13 MM patients at Moffitt who have undergone this protocol. MM has remained largely incurable, and we are hopefully that this will provide a remission that is more curative.
Regarding the BMT, John will be in the hospital for 21-23 days and upon his release will need 24/7 care for the first 60 days he is home. Thankfully my mom will be coming down to stay with us so that she can be the caretaker while I work during the day. My mom has already spent a month with us, and is gearing up to spend at least another two months to help us get through this. I can’t even express how lucky and grateful we are to have my mom who is willing and able to quite literally drop everything and come help.
As far as visitation during that time goes we are saving up for an iPad so that John can Skype and/or do Facetime with you all. He really misses all the time he is used to spending with his friends and once we have a better understanding of what the impact is on his immune system. The one thing we do know is that if you are sneezy, wheezy, or any other form of sick you can’t visit at all. And if during that first 60 days he is home, and one of us gets sick, that person has to leave until they are well! More information in this regard will be forthcoming once we have a better grasp on everything.
Overall, John has felt a littler better in the last few days and is hoping this cycle is slightly less taxing. He is still struggling with the neuropathy in his feet. He is trying to find the magic combination of pain meds and supplements to make it tolerable. Personally, I am really hoping that tiny bottle of $60 foot cream I had to buy works! Yep – I’m still sulking about that pharmacy run. I think that is about it for now – I’ll post again after this chemo cycle is completed and we get results from the Dr.
P.S. John would like everyone to know that in my last blog I stated that MM is a type of bone marrow cancer, but that it is actually a type of blood cancer. Myeloma Shmeyloma! Obviously cancer hasn’t dimmed John’s special little habit of debating everything! J
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