A Transplant or Not ?

[Lillian Evans]

I am a healthy 74 year old. Diagnosed with MDS in January. Doing quite well on Decagon. Doctors really pushing the idea of a transplant. It sounds to dangerous to me at this age. Really making me nervous trying to decide. Pamphlets said the transplant only helps 4 out of 10 people. Didn’t seem like very good odds. Would go to Omaha for the transplant. Any thoughts or ideas would be appreciated. Lots of sleepless nights thinking about this big decision

[rar]

I had a transplant 4 years ago at age 73 for MDS RAEB 2. At the time 3 year survival was 4% with no transplant and 60% with transplant. Transplant cured the MDS but I have GVHD as a side effect. I would do it again.

Ray

[Sherry Pratt]

Lillian,
I am with Ray. What did the doctors tell you about how long you can take Dacogen.?

[Lillian Evans]

Dr. said 2 years maybe 3 at the most. Will be having another bone marrow biopsy this week, so maybe will know how the decagon is working. I have had two rounds of it. My counts have really improved since being diagnosed.

[Donna]

Lillian…..How low were your counts? Is that the regular transplant they are talking about or that mini one (I forget what they call it) that is supposed to be a bit easier to tolerate?
Donna

[Lillian Evans]

Donna, Due to my age it would be a mini transplant. In Feb. my Hemoglobin was 6.9 this week it was 10.1. The platelets in Feb. were 80 this week 152 so my counts have really improved after two rounds of Decagon. I am really feeling well, but they say the chemo will only be effective for about 2 years. I was wondering how successful the mini transplants are ?

[Donna]

Lillian………..I am 72 and my WBC and platelets are the ones that are going down. My doctors said the same, because of my age I would not be a candidate for the BMT but I might be a candidate for the mini one. It’s all so strange to me because he said I am “pre-MDS”, evolving into it I guess. My WBC runs between 1.4 and 2.8. My platelets have been going down steadily, last at 67,000. He is talking about Decagon for me when my platelets get to 50,000. I had read that the counts usually go down during the first few cycles of Decagon, but I see your have improved. That is so good. My hemoglobin is about 10. When do they do the mini transplant? I mean, can you have the Decagen for a year or so and then decide? When does your doctor recommend it? It really is a tough decision. I guess a lot would be dependent upon the odds. I have a few mutations that worry me a bit. They have been following me for several years now. It’s weird and scary at the same time. Donna

[Lillian Evans]

Donna..The Dr. told me anyone over 65 would get a mini transplant. Meaning the chemo would not be as strong. He also said with me being 74 I couldn’t put it off to long. In a couple of weeks I should have all the results from todays bone marrow biopsy. The Dr. seems to think when the blasts go down that would be a good time to have the transplant. When I think of being away from home at least 3 months it really bothers me. I also had another Dr. tell me the Decagon only works for about 2 years and if I wanted to live longer I should have a transplant. There are no guarantees that they are always successful. My stomach just churns just thinking of all this !

[Donna]

Lillian……My heart goes out to you. It is a tough decision to make. I think about it ahead of time because my doctor said I MIGHT be a candidate for a mini transplant. We have not discussed it because I think he means down the road. What makes someone a candidate? Do you know? Also, do you know if there is a cut off age? What is the reason you have to decide very soon? Where do you have to be for three months? Isolation? Do you stay in the hospital? Donna

[Lillian Evans]

Donna, I think the Dr. said if my blasts are way down that is the best time to get a transplant that would be successful. I think if I had other health issues they would not think a transplant would be a good idea. I am lucky that to my knowledge that I do not have other health issues. If a transplant is to be I would be at the Buffett Cancer Center in Omaha. The first 30 days at the hospital then at least 60 more days in a hotel, motel, or an apartment.

[Donna]

Lillian……Would you just have to be in a hotel, etc. to be near the hospital or is for the isolation to avoid germs? Would you have to be alone? Donna

[rar]

My experience was that I had to be within 15 minutes of the hospital for 90 days past the transplant. I was in the hospital for a week past the transplant. The 90 day restriction could be at home, in an apartment or hotel. I was also able to find two places a mile from the hospital that will put up transplant patients for free for as long as necessary. They have high standards of cleanliness. We met people who had been there a year. The hospital would only do a transplant if you had a full time care giver who was committed for the duration.

My transplant was at age 73. My blasts were 13%. I went on a clinical trail and blasts went down to 2%. The doctor told me that all drugs are only temporary and should have an immediate transplant if I wanted to live. Transplant was successful and I am still alive at almost 4 years. I did suffer from GVHD. Imbruvica is finally helping with the GVHD so maybe I can lead a normal life again.

Ray

[Donna]

Ray…..If you stay at one of those places that put up transplant patients, do you have to be there alone or can your spouse stay sometimes? It sounds like a lot to go through. Donna

Lillian….Did you make a decision yet? Donna

[rar]

As a condition for a transplant most centers require that you have a full time care giver, so yes you need housing for the caregiver. The places we looked at had provision for an in room care giver. The place we stayed at had 1 or 2 bedroom apartments that had 2 to 6 occupants. They had bedroom with linens, bathroom and a fully stocked kitchen, internet, etc.. All you needed to bring was clothes. Diner was served on community dinning room or as room service. Some of the daytime entertainment included trips to museums, VIP seating at pro baseball and football games, dinner playhouse, DVD’s, etc.

A transplant is not to be taken lightly, it is risky and frequently has bad side effects, but it beats the odds by a country mile of not having one.

Ray

[Lillian Evans]

Donna, am waiting to get the results from my bone marrow biopsy and will then see the transplant Dr. May 22. I am having a terrible time making up my mind. I feel so good now and after reading of all the complications that can occur following a transplant its a tough decision. I have had three Drs. tell me the Dacogen only is affective for two years. I would really like to live longer than that.

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