new member, need info

[Charlie G]

Hi, ny name is Charlie, I was diagnosed at Mayo Clinic in Sept. with MDS, Raeb2. My platelet count varies from 50-75. My WBC is 2.0-2.9 My HBG is 11-12.5 I have had two BMBs – the first at 16% blasts, the second at 10% blasts. These levels have persisted from August to current. I am not currently receiving any treatment, other than weekly blood tests. I am scheduled for a allogeneic transplant in January. I have a matched related donor. My main question is since I am feeling fine, how long can I expect to feel fine and should I take the risk of a transplant at this point? I am also interested in knowing the quality of life after a successful transplant. I am a bit overwhelmed and would appreciate any information anyone out there, who has experienced similar situations to mine, could give me.

[Chiparoo]

Chuck,

Got the same kind of MDS as you. pal! And I’m just as overwhelmed as you are! I’m sure a bunch of us feel the same way as you do. Your numbers are better than mine, though. Love to have my platelets at that number without having to get a bag or two of them every 10 days!

I’m responding to your post because you, as I, will soon receive an allogeneic transplant, probably in 2 or 3 weeks (what a Christmas present!). It’s great that your donor is related; success is greater with a related donor than with a non-related donor, the kind I will receive.

Your statement about “feeling fine” shows how “cunning” this disease can be. I’ve been hanging with this for about 3 years, and, all of a sudden, BANG! my platelets went from an average 70,000 to 22,000…all because of a contusion on my leg. Last week, I was hovering around 32,000, and BANG! Bloody nose! Platelets crashed to 10,000. The lowdown is, I don’t want die from a nose bleed!

I guess what I’m saying is that, yes, you may feel “fine” now, but the only cure for our disease is still a transplant. Sure, there are risks involved, but ultimately, what are the options? Chemo may sustain you for a while, but a BMT is still something you may have to face. Hopefully, you’re of an age that you can handle it;
I feel for our fellow members that are of an age that cannot choose this for an option.

I am currently on no therapy. Vidaza, which has worked for some, did not work for me. I have just become tired of bone pain, anemia, not having a bounce in my step, and the constant reminder through a nose bleed, bruise, or cut that I have a serious disease. I’m gonna do it because I feel it’s my best option, and I’m still young and fairly strong. I want to get old with my kids and my wife. I can’t tell you how long you can expect to feel good. It’s different for every one of us. And, as with some of us, your condition can change like BANG!…that. You may want to ask yourself if you want to wait for a platelet-crashing episode to happen in order to make a decision.

Good luck, and god bless,

Chip

——————–
48, Dx w/ RARS April 03. Long arm of chromosome #20 missing. Unsuccessful month w/Thalidomide (severe neuropathy) Jan 04. Dx w/RAEB Aug 05. 2 rounds of Vidaza. Vidaza stopped 11/05 – no sign of improvement. Found bone marrow match, donor committed. Waiting for transplant date.

[patti]

Chuck,

I can’t offer much by way of transplant information but I do have some suggestions that I believe will help. Not sure how old you are but no matter how old anyone is going into a transplant the best thing you can do is be as healthy as possible and as strong as possible (despite the disease). That said, I would highly recommend you find a cancer naturapath that can help you strengthen your body before you go through the chemo and transplant process. They will advise you on diet changes and supplements to add that will help. Our hospital system here happens to have a clinic called the “Integrative Medicine Clinic.” All they do is work with patients to minimize the effects of chemo and help after transplants. If you can’t find something like there where you’re at (you might have to make some phone calls) you can look in the phone book for naturapaths and just start by asking if they specialize in dealing with cancer patients. If they don’t, go to the next one. More than likely, someone will say they know a fellow naturapath that does do that. Whatever route for therapy a person chooses, it can always be enhanced by strengthening the body with diet and supplements so that they’ll be more able to handle the difficulties that will come with chemo and transplant.

Best wishes to you. A transplant was never an option for us because of mom’s age. Not sure what she would have done if it was an option.

patti

[sugarwhale]

Dear Charlie,
Welcome to our Forum! You’ve come to the right place. Everyone here will help you and understand. I have a few suggestions: First, be sure your doctor is a specialist in MDS and that, if possible, you go to a “Center of Excellence.” It looks like you’re doing that. Secondly, you are very fortunate to be eligible for a transplant; this is the only real cure so far. I agree with Patti that you should keep your body in as healthy a state as you possibly can. Lastly, you might consider looking back at previous posts on this Forum. There’s a great deal of accurate and encouraging information. The people here are on YOUR side; we’re here to help. Good luck and best wishes. We’ll be watching as you keep us posted, and we’ll be encouraging you along the way.
~~~ Janet

[kevin101]

Hi Guys,
I am newly diagnosed: 47, RAEB-2, and it looks like I’ll be facing a similar decision. Are your doc recommending a “full” or “mini” SCT?
Best,
Kevin

[Charlie G]

Thank you to all of you who responded to me. It is nice to have people to talk with who are going through MDS too. I am preparing for a transplant in January. My brother is a match. I am looking for information of what to expect in the days & months following the transplant. I would like to talk with others who have experienced it. I have subscribed to BMT-Talk and located some additional resources. It is a difficult decision because I feel so good right now. I am glad to be a part of this forum. There is a lot of good information here.

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