Decision time!

[shirlsgirl]

Hi Frank,

I wish you luck with your decision also. 41 is young, a plus indeed, just think if you are MDS free you can you enjoy your daughters for many many many years to come. I hope they find you a perfect match, please keep us updated. Jody

[alexandra7]

HI!!!
I’m not in any position to give you proffesional advice. I don’t know what the risks are and I don’t know what that miss match means and how dangerous it is. What I would do in that 4 weeks is : I would get as many infos as I can and after that I would put in a balance the advanteges and disavanteges of the disicions that I could take. Of course I understand that there is some risk involved that is why you have to find out how big this risk is if it is worth assuming it .What are the chances that this procedure goes well ? This is what you have to take into consideration. What are the chances that after this you can go back to a normal life?I really would like to hear what your decision will be. You will be in my prayers. ALEXA

[Bill and Mary]

Dave
I just read the article in Blood Journal refered to above, http://bloodjournal.org/cgi/content/full/bloodjournal;104/2/579. I is very interesting and may be able to help you in your decision. However there are a few issues you need to have more information about if you are going to use it.

You need to have a better handle on your MDS classification, RA, RAEB ect. Are you high or low risk?

The study deals only with related doners and specifically excluded folks getting a transplant from nonrelated doners. However, in the next to last paragraph it allow that the study may also apply to nonrelated doners but not as reliably.

It seems that if you are a low risk patient, you are better off waiting a period of time before getting a transplant. They suggest that the timing of the transplant could be based on “a new cytogenic abnormality or the development of transfusion dependence”. They could not test this theory with the data. Likewise, they did not have the data to suggest any other interval on which to base a transplant decision other than before the MDS went to AML.

If you are a high risk patient, the suggestion is pretty clear. Get the transplant sooner rather than later.

It seems to put a lot more stress on classifing what sort of beast you are hauling around. I plan on asking the Hutch to be pretty specific about my classification when I see them next week.

Good luck with your decision!

[Marsha]

Dave,

Just to let you know I have had the BMT 11/19/04. My donor did not match at the C-antigen either. As of yet I have not had problems with GVHD. More so the CMV virus. Which doesn’t cause any problems unless you are immune suppressed. So have to take IV gangcyclovir but doing it at home. BMT was not a walk in the park and it took me awhile to bounce back after being discharged and then readmitted. But right now my new bone marrow is working great and a year from now I will have forgotten the worse parts and will be thinking of what a great gift I recieved.

[PamyRn]

Davea
Have been working since this you were diagnosed?
How much time is consumed in getting transfusions, dr’ visits, feeling like crap ect?
I am also 48yrs old…have only been dealing with this since 1st of Nov and Im so tired of it all. Have been on sick leave from work. Im a health care worker. Have been so up and down with counts and transfusions. Thought I had at least 9 months but mine was RAEB-2 and it transferred into AML and I have now undergone one “round” of chemo. It went well but the week after has been the challenge. Had terrible rash, diarrhea, loss of appetite, hair starting to fall out, hgb went down to 5.5 and ended up in ER the other night as I couldnt wait to am to have transfusion. NOt fun. If there is no possible way to find a perfect match I would prob go with the BMT. I just want the chance to live a normal life. I know there are risks but it depends on how miserable this disease has been so far….Good luck with any decisions you make
Pam

[PamyRn]

Marsha
What part does the CMV play in a donor selection?
The first test I had it said I wasnt positive or negative..just kinda in the middle. They redrew me and I came back negative….does that mean they have to find a donor that is negative??? And if they are postive then I could battle with problems relating the that??? Right now have one 10/10 match…they are testing a second specimen and have two more coming this month that look to be 6/6. I probably will be going in for BMT by 2nd week of Feb. YIkes…anxious to get this over with but scared.

Pam

[geebeebee]

Hi Pam,

Regarding the donor selection, it is an important, but not critical, part of the process, according to my Mom’s doctor. Ideally, you have a match — negative/negative or positive/positive. After that, you being negative with a positive donor is better than being positive with a negative. So, really, since you’re negative, you’re better off from the start. Not having a match on CMV does play a risk, but it is treatable, as Marsha has shown.

Take care,

Greg

[Davea]

Pam,

When I was diagnosed in May of 2003 I was off work until July 2003. Was put on Eprex and Neupogen which stablized my hgb. counts between 71 and 80 for a few months. Started getting transfused again in Nov. or Dec. of 2003. First it was every 8 weeks then 6 wks. then 4 then 2 in May of 2004. I get transfused when my hgb drops to 70 or less. Was put on cyclosporine in June or July of 2004 and have been getting 2 units of RBC every 4 weeks since. It takes me approx. 5 hours to receive 2 units of RBC. My platletts are very low as well, currently at 14000. Did get 3 platlett transfusions in May of 2004. I do feel like crap the week before I get transfused but most other times I feel OK. I am CMV negative as well and wondering what my potential donor is. It’s wonderful to hear that you have that perfect match. If you are CMV negative make sure you’re getting CMV negative as well as irridated and filtered blood products.
My wife and I have booked a 7 day cruise for Feb. 20th in the Southern Carribean and after that I’ll probably be having a transplant in late March or early April. I’ll be praying for you and look forward to hearing good news about your transplant outcome.

[PAG2005]

Greg,

I noticed your mom was diagnosed with secondary MDS in September and had her midi-transplant in November 2004. That was a quick decision. Were her WBC and platelet count low when she went for her transplant? How are her counts now?
How is she feeling now? Do you know what preconditioning she had prior to the transplant? My mom is in her early 70’s and has AML. She is currently in remission but it appears she might now have secondary MDS. Her counts started to slowly drop again after her last chemo and we were afraid she was relapsing but it appears her bone marrow just never bounced back this time around. We are searching for an unrelated donor for a mini-transplant. It has be confirmed but I believe she has a 9/10 with mismatch on the B antigen. They might want to try and hold out for a 10/10. Has your mom had any GVHD? I give you mom a lot of credit to go forward with the transplant. It’s not an easy decision. She must be a very strong woman. I wish her good health and a speedy recovery. You both will be in my prayers. Pat

[geebeebee]

Hi Pat,

Thanks for the kind words, and I’m sorry to hear about your Mom. Yes, it was a quick decision — her platelets and WBC were spiraling downwards quickly — I believe her platelets went from 45 to 10 in about a month. Her counts are very good right now — her platelets are at 130 or so, and her whites are pretty good, although the infection-fighting ones are the slowest to come around, from what I hear.

She’s doing OK, right now, but very weak and tired all the time. Her appetite has been one of the biggest problems — her mouth is like cotton and she has some nausea, too. To complicate matters, the process has raised her blood sugars to the point she has to take insulin. Really, even though she has a lot of issues, she hasn’t had any GVHD issues yet, and she tested OK for CMV, which is something they need to watch as well. She was especially weak for a while last week, so they tested her lungs and heart, and they both turned out fine, which is good.

Her preconditioning was fludarabine and busulphan. She had one dose of Rabbit ATG, but that put her into a scary spin during her stay, so they stopped giving her that.

It was a tough decision, but fortunately for Mom, she had a brother that matched, so it did make the decision easier. It’s definitely not an easy road, and there’s a lot more to go, but she is pretty tough — she’s already tackled breast cancer, and she has Parkinson’s that she deals with as well.

Best of luck on your Mom finding a match — I’m sure that is a stressful situation all around. Keep in touch on her progress, and we’ll all be wishing for the best.

Take care,

Greg

[Joannie]

Hi Dave!

Glad to hear they have at least found a match that they feel comfortable with! It sounds like you have decided to go through with it? You know yourself you have to weigh all your options and go for what is right for you! I hope you and your wife have a wonderful cruise! Please let me know how things are going. Is Dr. Coubin performing the surgery? I have heard nothing but wonderful things about him from a former patient Andy Corkum-leukemia free for probably 8 years now! How long will you be in the hospital? My thoughts and prayers are with you Dave, I hope you beat this! It was one year ago today the MDS finally took my dad, it will be wonderful to hear of a success story here in Nova Scotia (anywhere too of course, but a little extra when it is from home) Please keep in touch, Joan

[Davea]

Joannie,

I notified them yesterday that I want to go through with the transplant. Yes it will be Dr. Coubin doing the transplant and I’ve also heard some great things about him. The transplant will probably happen in late March or early April. I’m not sure how long I’ll be in the hospital. Guess it all depends on how soon a person recovers. Normally I believe it’s 3 to 4 weeks and then I’ll have to stay in the city, close to the hospital for awhile. Great to hear from you. Dave

[Carrie]

Davea,

Good luck with your transplant. It took just about 3 weeks for my dad to recover after his SCT for Non-Hodgkins Lymphoma. It was really amazing .

Carrie

[Marsha]

Dave,

I had my BMT on Nov 19th, got out of hospital Dec 23 but had to go back Dec 27 due to problems with my stomach which they thought was GVHD but ended up to be the CMV virus. But am at day +69 and doing well. Good luck to you I pray things will go well for you.

[sarah]

Dave, best of luck to you!

[Author]

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