Stem Cell Transplant – need imput from you

[Christina]

Hi Everyone!
My Dad’s disease seems to have progressed according to his bmb last week at Sloan. When we were at the Dr’s she spent an hour discussing stem cell transplants. Every time my dad asked what other options he had she looped right back to stem cell transplants…do you think she is pushing it? She wanted him to realize that if he goes on any drug it could hurt his chances of being a candidate for a sct. In my research so far of sct it is pretty scary! Although they found 10% blasts in his marrow and upgraded his category of MDS from RARS to RAEB/intermediate2. I asked the Dr. for a prognosis via email since none of us did so in her office. (something I think we all avoid) She emailed me that her “statistical numbers” show that someone with his category and blasts have a survial rate of 12 months. Now I find this so hard to believe, not only because he is my Dad, but because when you see him you would never know he has a disease like this!!!! Am I crazy? I have to keep telling myself how sick he is. We are going to his hemotologist Friday, May 13 ( oh no I just realized that’s Friday the 13th ) Oh well??!! I am going to pick his brain and ask questions about my dad’s disease, who he thinks the best Dr.s are in his opinion in the MDS and SCT field and facilities as well. Our Sloan Dr. is in Japan at an international MDS conference (hopefullly she’ll come back with some new info!)The Sloan Dr has started the wheels for the SCT with the insurance co. she said it will take 2 mos. to do all the paperwork and take all the tests. And that he could change his mind at the last second if he wants to.
I am looking to all of you to give me any help and advise on SCT…also any questions you think would be helpful for me to ask all of the Dr.s, we will be meeting the transplant Dr. soon too. He is no longer taking Vidaza…he is only on procrit and having tx.
Thank you so much for any help and input you can give!! Christina

[frank]

get the match game going, for me it spend almost 2 months to finish the match(even the result is bad). depending the insurence, maybe try mini-sct(more save), i heard it has a really good success in England(to cure the MDS), not here…
the disease is so stupid, like me i always feel pretty good even the blood counts already dropped into 7’s, never know how fast it will go and how to control on it.

with a match, you may be a lucky one… just try the best to fight with the beast…

Frank

[eve]

dear christina

i am so sorry to hear that your dad’s mds has progressed – i have no information or experience on sct – i can just offer you my hopes and prayers that anything he does will be successful
and bring him good health

eve

[Bill and Mary]

Christina,

I know exactly what you are going through. Last May I was diagnosed with RCMD. As of this May it is RAEB-1 and climbing. You don’t look sick but you do not feel well, no stamina and all the other stuff that accompanies low counts across the board. I think your Dr. is about right on the prognosis, Swedish Hosp in Seattle says the median is 9 months with a range of 1 to 50.

As far as the SCT/BMT is concerned, what other choice is there. All the medication trials seem to show that they work for some and not others and none of them are a cure. Yes, the odds are not all that great for survival, 50-60% after 5 years, and those interveining years can be tough. However, the odds of loosing are less than winning and the option really is not an option, at least to my thinking.

It has taken me a lot longer than 2 months so far to get typed and get a donor. While I had over 3,000 initial matches, they found a little quirk in my blood that really reduced that number at the fine matching scale. My first donor became unavailable the day I reported to the Hutch. They identified a second donor within the day but it takes time to have the donor go through the necessary hoops, especially if they are overseas, mine is in France. What I’m saying is that 2 months is optimistic, Murphy rules and you have to be prepared for it.

Blood Magazine had an article last year on the timing of transplants. It might help you to read it. What I came away with is that when things are changing, as they are with your Dad, it is time to do the transplant. Once he gets to AML, things get very very difficlt. What if questions do not help at that point.

The BMTinfo net and the National Bone Marrow Donor Program are both good sources for information and questions to ask your Dr.

I’ll get off the soap box now. I hope the best for you and your dad. All the options suck but I think the transplant is the least sucky.

Bill

[shirlsgirl]

Hi Christina,

I’m so sorry about your Dad’s progression. I agree with Frank, to ‘get the match game going’. You may find some comfort in knowing that there is a match available. Hopefully his Sloan doc. will come back from the mds conference with some new info. Maybe a mini or a midi SCT is a good option for your Dad…

Hang in there,

Jody

[sparty517]

Christina,

My wife (56) was diagnosed in August 2004 with MDS (not sure of her classification – RAEB?) and her Doctor immediately suggested the SCT. She had a consolidation round and went home in September, but during that time all her brothers and sisters were tested to find a match. Fortunately her brother was a 6 point match and the SCT was done in October after another round of chemo. She has had some residual issues (liver enzymes and high levels of iron in her blood) but overall the doctors say it went just the way it should have and she is looking forward to almost a complete recovery.

I am with the others when I say go for the match ASAP. I am certainly not an expert, but the results my wife has had with the SCT have been excellent!

[Lolam]

I, too, feel well and it is hard to believe that as I write my MDS is steadily progressing toward AML. The specialists in Seattle told me that I should go for the SCT as soon as possible. Once it goes to AML you have to get that in remission in order to proceed. The SCT has a percentage chance to be a cure. If you progress to AML they can only delay the disease but it will not last forever. My onc here at home also told me that the treatments for AML are very difficult. So if I thought it was the lesser of two evils (SCT or MDS to AML) I should think again… He told me to get off the fence and start the typing right away. He also said if I felt I had lived a good life and wanted to let it take its course and die in a year it was an option….My family was not for that option to be sure!! I know the transplant sounds horrible but the end result is worth shooting for. I would like to see your dad go for it.. I am waiting for a match just now. It isn’t a sure thing that will happen anywise so you might as well get started. You don’t have to go through with it at the last moment if you don’t want to.
It is just that the treatments for MDS and AML do not last. And they are no joke…. I guess we all will admit we are between a rock and a hard place, as my dad always would say.
God bless you as you try to make sense of it all. I know He will guide and give you peace if you ask for it!

[Christina]

Many thanks for all of your responces. I am taking them all into consideration as I write my questions tonight for my dad’s visit to the hemotologist tomorrow. This just feels like a bad dream…but things could work out just fine. We have to believe…right?! You are all in my thoughts and prayers…we will beat this…all of us! Christina

[Jimbob]

Christina,
When I was diagnosed in Feb 2004, I was told that my probable survival time was maybe 5 – 16 months, average about 11 months – or maybe I could just smolder for 10 or even 20 years, like a few do. I was sure that I could get better without a BMT or SCT. I went thru detox, juicing, natural and organic foods, specific vitamins and supplements as well as acupuncture and more. I actually was getting better for over 9 months. During this time, though, I also left the option for BMT/SCT open. I made sure that my insurance co and the hospital would be ready if I decided to go that route. The decision was pretty much made for me when all turned to crap January 2004. My CMML suddenly went ballistic and I had to undergo heavy chemo. Even with 4 perfect donors already lined up, I was unable to get SCT until March 30 due to my health complications.
I recommend having everything ready for a BMT/SCT as soon as possible so you can grab that option should things start to go bad.
Jim

[Neil]

Hi Christina,
Some thoughts to think about and discuss with the hemo.
The 12 month survival is the average. Will it apply to his situation?
There are other options such as chemo, other drugs, but how will he respond? could prolong the 12 months, but for how long and what will the effects be?
There have been significant advances in unrelated donor matches. Discuss with the docs.
Since he looks/feels good now have they discussed options that might keep him looking/feeling good longer. Reducing marrow blasts, stoping blasts from getting to the peripheral blood. What would the effect of these steps be?
Would proceed with the SCT steps in the meantime and gather all the material you can find to help with the decision on how to proceed.
You need to know success rates at the facility doing the SCT on patients his age, with RAEB/intermediate2.

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