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Old Sun Jul 24, 2016, 11:01 PM
Annkilter Annkilter is offline
Join Date: Jul 2016
Location: Grand Rapids
Posts: 3
MDS - Life changes

My husband received the diagnosis of MDS on June 10. He started Vidaza a week later. His type is RAEB-1. On April 20, they found blasts in his blood. Did a bone marrow biopsy on June 1. We went to Ann Arbor (University of Michigan) to be evaluated for bone marrow transplant. They concluded he was not eligible due to his weight loss, lack of strength, and IBS. He also has thrombocytosis, which has spiked to 1.2 million since he was told to go off Hydroxurea (a drug to control the platelet count). Since going on the Vidaza his white blood count has gone up to 6.9 and hemoglobin to 10.0. While on the Hydroxurea, his white blood count hovered around 2.0, and his hemoglobin was under 8.5-9.0. His bone marrow is 70% hypercellular. All three cell lines have some dysplasia. His peripheral blasts have gone from 1% on April 20 to 3% on July 18. His bone marrow blasts are 5-9%. At U of M, his peripheral smear had evidence of fibrosis. I don't know what is ahead, but his doctor said six months to 3 years.

So we have been making changes. The biggest one is to move with our daughter to a condo that she is buying. My husband is depressed about moving out of our house of 21 years to a condo. There is so much work to do, and he he doesn't have the strength to help as much as he would like. He is overwhelmed by the work involved. And he still wants to fix things up. But laying a little bit of tile in the bathroom floor exhausted him. He is frustrated about that. He feels depressed and scared and angry. I have done my share of crying, but I have to keep going so I stuff it down. I have too much to do.

We are struggling with his weight loss. He got new dentures in February for the first time and that is complicating his attempts to eat. Chronic diarrhea plays a role as well. Well that is enough doom and gloom for now.

Thank you for listening.

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Old Mon Jul 25, 2016, 05:30 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,473

How unfortunate that your family received this dire news. I know how scary it is. Moving your home at the same time that you are fighting this type of disease is a tough transition too.

When a transplant is being considered, factors that come into play include age, other health conditions, and the availability of a donor. May I ask how old your husband is? If he gains weight and gets stronger, might the transplant choice be back on the table?

It sounds like the primary effect on your husband's day-to-day life is fatigue. That can certainly be frustrating for someone who is used to being active. I hope he can get used to going a little slower. Has he needed blood transfusions? Make sure that his doctors know that fatigue is a big issue for you. Sometimes doctors spend all their time trying to preserve life and only address issues like fatigue if you bring up the subject. Fatigue itself may not be life-threatening, but it's definitely a drag on the quality of your life.

Patients often press doctors about how long they'll live with MDS. The doctors can speak about the statistics, but when taking about one individual patient their predictions are often wrong. You can understand why patients ask and why many doctors would rather not make predictions. In any case, when they count your remaining time as a few years it means you have to weigh the quality of life with and without the various treatments they may suggest. We should all make the most of our time, and do what's important to us, but that's all the more relevant when you have a serious illness.

His doctors may have some ideas about eating problems and the best way to get nutrition, but a major treatment center will probably have on-staff nutritionists who are the best ones to consult with. I suggest asking about this. Maybe you just need a referral to that type of specialist.
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Old Wed Sep 14, 2016, 11:38 PM
Annkilter Annkilter is offline
Join Date: Jul 2016
Location: Grand Rapids
Posts: 3
Change in diagnosis

Now my husband has the diagnosis of post essential thrombocytosis/myelofibrosis. This occurred as a result of being assessed by the University of Michigan bone marrow transplant team. We asked what the prognosis was with the BMT. They said he would have a 34% chance of surviving two years after BMT. We asked what his prognosis was without the BMT. They said six months to two years, maybe three. Our local oncologist said the same thing.

I have received the final report from U of M from our family doctor, who has been our doctor for over 20 years. I think the prognosis comes from Rick's myelofibrosis (which is a form of bone marrow cancer as well) combined with his significant comorbidities. He suffers from malnutrition, cardiomyopathy, and suspected IBS. So there you have it. However, other than the fatigue and low blood cell counts, he is doing pretty. Quality of life is fairly good. We have moved in with my daughter and are currently in the process of selling our house.
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