Hi everyone. Many thanks for your help and support on my last post.
My husband David is receiving chemotherapy (Vidaza) to improve his blood counts.
His MDS is a serious stage, described to us as "refractory anemia with excess blasts 1." His blood counts are all extremely low with an ominous increase in "monocytes."
We had a consult at the Mayo clinic with a transplant specialist who concurs with his local oncologist that a transplant is the best treatment, and also that the MDS is likely the result of his earlier treatment for CLL ( six cycles of FCR, nearly ten years ago now). The specialist met with us and explained his disease and the transplant process. She advised us to continue with the chemo for at least two more cycles to try to achieve a "firm remission" before beginning the transplant journey. She was very direct and told us that the success rate is 50%, with many risks and possible complications. Still there is the chance of a cure.
The particulars of his disease are very complex , involving chromosomal mutations and possible molecular changes. Mayo is doing more testing to define things.
Meanwhile we are back at home in the Wisconsin northwoods, winter has (finally) come in. David feels pretty good now and we are treasuring every day. Another round of chemo starts tomorrow, it's about a 90 mile round trip to the infusion center and back. He has received a number of transfusions of concentrated red blood cells and a couple of bags of platelets over the last couple weeks, with two days in the hospital due to a neutropenic fever.
This is all very overwhelming. He is a calm determined person with a great outlook. I am doing my best to manage my fears and do what needs to be done. I am getting help and good advice from the Leukemia and Lymphoma Society, a national organization.
I have not been pleased with the poor interface between our local cancer center and the Mayo facility. But we are fortunate that the Mayo is "only" four hours from our home, and is one of the finest medical facilities on earth.
Best to you all, and please keep us in your thoughts.
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dwolden
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Oh wow, it sounds like David is having a rough ride. I hope you will keep us updated on his progress. All of us with cll know, at least on some level, that complications can arise that create great challenges for us. Posts like yours can be a reality check for some as many of us like to think our Cll journey will not be too rocky. As much as I like to bury my head in the sand about how challenging cll can get, I find posts like yours informative and helpful.
For me, 50/50 odds can separate the optimists from the pessimists. An optimist sees them as good odds, a pessimist as bad odds. You and David sound very much like positive thinkers. Perhaps more importantly, you appear to be proactive people, gathering info and using one of the better medical facilities in the US, if not the world. I have to think being positive and proactive puts you on the better side of the 50/50.
My youngest child was born very prematurely. He developed one of the horrible complications premature babies can get that required emergency abdominal surgery. I remember to this day the surgeon telling us he had a 50/50 chance of surviving the surgery. The neonatal doctor that had been caring for him saw how distraught we were. She told us that she had been caring for him for three weeks and that he was one of the fighters who would survive the surgery. How one can tell a 2 pound child in an incubator is a fighter is beyond me. But she was right. Fast forward 30 years and he is now an immigration atty representing unaccompanied minors for a non profit company in DC.
Ever since then I have kind of liked my chances if the odds are even. You have described David as calm, determined and with a great outlook. I think that makes his odds better than even. I hope I haven’t overshared. Your 50/50 odds story just triggered a memory for me. Good luck.
Oh so many thanks Jeff. I am feeling better about things after some moments of crushing darkness, and your post definitely helped me. That is exactly what our local oncologist told me about the odds "Yes its a 50% chance of failure, but it's a 50% chance of a full cure!"
I'm pleased to hear that your husband's transplant is going ahead. Lots of uncertainty to come but as my doctor said "you have a x% chance of dying due to the transplant and the process but a 100% chance of dying soon if we don't go ahead" It sounds as though the situation is similar for your husband.
As you say, you are at one if the finest medical facilities in the world and they will have done this hundreds of times before for people like your husband. That is a huge advantage as they will have seen all the possible complications before and have experience of what worked for other people.
As I did, he needs to go into the transplant with a good remission and feeling well to have the best possible chance. There will be difficult days but there is hope and that is very precious.
Exactly Jackie and I needed to hear it put that way from his local oncologist. It has helped me get out from under the paralyzing dread and start moving forward.
I'm wishing your husband all the best. Like Jackie has already mentioned, he is under the care of one of the best cancer hospitals that we have, they have seen it all, they will know how to react and what to do. I really hope and pray that all the stars align in a way that will make it all as easy as possible but most importantly to get the results that you and him need. Lots of strength and courage to you both. Petra ❤️
So sorry you are going through this but sounds like David has a very reasonable chance of beating it. I know that we will all be rooting for you and looking for updates.
God bless you both, dwolden. My prayers are with you. Yes, the snow is falling in our beautiful state...everything blanketed sparkling white. I like to think of it as a fresh start with the promise of good things to come in Spring.
The two of you are heading for a rebirth of your situation. May your path be as smooth as possible to beating CLL and leaving it in the dust. Warmest hugs!
you and David are in my thoughts for a positive outcome. Just curious when did all this start and what were his numbers. I mean did he have low neutrophils or low platelets and that raised the doctor’s suspicion?
Dave, David has had low blood counts ever since treatment. It was termed "full remission with incomplete recovery of the bone marrow." He was seen for follow up every six months, or every three months if numbers very concerning, but no treatment needed for over nine years after FCR. Last November he was experiencing increasing shortness of breath on exertion and fatigue. Blood tests showed a shocking drop in his counts since they were checked in June, across all cell lines. His oncologist ordered them redone immediately as he thought it must be a mistake. Sadly it wasn't, and a bone marrow biopsy indicated MDS.
I am very sorry to hear about his results. But I was told that there are some treatment available before the ultimate which is Stem cell transplantation. Which will cure him if he makes it through the transplantation. I wish him all the best
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