Please help. Need info on succesful BMT's

[Paul 36]

Hello, I ma a 36 year old male facing the prospect of MDS. I go to my hemo next week for testing. I have read everything I can find about BMT trasplants, match and unmatched, but I want to here from the people who have been successfully transplanted... How old were you when you did the transplant, and what was your recovery time and problems along the way.. I have also read that having a matched unrelated donor is just as good as a sibling donor now. Anyone else heard of this... PLEASEEEEEEE help, I am trying to get as much info as I can, and the people of this site seam to have a wealth of knowledge..

I wish I could reach through and hug you all.. ( very emotional lately... ) Atleast I have the spport of my wonderful wife no matter what happens.. God bless, and please reply..

[Ruth Cuadra]

Hello, Paul.

Welcome to Marrowforums. I hope you can find some useful information and support here. It sounds like you have just enough information to induce panic and not enough to make any sort of decisions right now. The first thing I would suggest is contacting the Aplastic Anemica & MDS International Foundation and asking for their basic information packets about AA and MDS since you don't know yet which you might have.

The counts that you reported in your other posts don't sound too bad although it is disturbing to see even small declines. A diagnosis of MDS can only be confirmed with a bone marrow biopsy so try not to convince yourself that you have it as opposed to AA or any other hematological disease until you've seen the doctor and been tested.

While it's generally true that MDS is a disease that affects older people, I was diagnosed at 41 (not much older than you are now) and had my transplant at 43. You can read about my experience here. I recently passed the 10th anniversary of my transplant with a matched unrelated donor and am fortunuate to be in very good health with few long-term side affects to bother me. While it's true that transplant outcomes are nearly the same whether the donor is related or not, I think the preference is still to use a matched donor if there is one. Do you have siblings who could be tested?

I'd be happy to answer any questions you have, if you post them here.

Regards,
Ruth Cuadra

[Paul 36]

God Bless you Ruth for your generosity and wealth of knowledge. I do have one brother and a half brother and half sister who would be tested if it came to that. (Plus multiple other friends and family members who would be lined up to be tested.) How long does it usually take to get the results from a bone marrow biopsy? Also, do you have an opinion on Baylor Medical vs. MD Anderson? Thank you so very VERY much!

[Paul 36]

Ruth - Just read your story. WOW. That's all I can say....just wow. You are a true inspiration to everyone who knows your story. Myself included. I don't see very many other posts regarding BMT stories. I hope that is not do to lack of success... Again, God bless you for taking the time to share with others...

Paul

[flowerlady]

I echo your concerns, and fears about transplant only I am interested in recommendations as to where in the U.S.to have the transplant. It appears that my MDS has progressed to the point where my Dr. feels it is time to prepare for a summer SCT. I live in the southeast and am blessed to have a brother who is a complete match...but, where to go is my question. If there is anyone out there that can share some info I will be eternally greatful. I have studied bmtinfo.net and several other sights but, understand that there are many facets to the stats each hospital offers as to the number of procedures and the intricacies of these procedures. Basically, I am just scared and overwhelmed. We just received the new this past week and I guess there is never a good time for this type of news. But, I count my blessings as I have the utmost faith in my Dr. here and am so very blessed to have my brother. Thank you to all for your support.

[Ruth Cuadra]

Paul,

Thanks for your kind words about my profile. As time goes on, I find I am a little hesitant to share the details of my treatment because the technology and care has improved so much in ten years that it makes much of my story obsolete. But, there are some parts that don't change much: arm yourself, as you are doing, with as much information as you can, get to the best transplant center you can, and have someone else along with you to listen and help you process it all.

Regarding how long it takes to get the results of a bone marrow biopsy, I can only say that from my experience at City of Hope that it takes about a week to get the basic pathology report that tells you about the number and shapes of cells in your bone marrow. More detailed information from cytogenetic studies that look at the chromosomes in your marrow can take a couple of weeks. It is the combination of information from these tests that will give your doctor the clearest picture of what disease you may have.

Your full brother would be the best chance for a matched donor, with your half brother and half sister next. Other relatives and friends are less likely to match but no one should ever be discouraged from having their marrow tested on the chance that they could help someone searching for a donor!

I can appreciate the uncertainty you and Flowerlady face about how to decide on a transplant center. The National Marrow Donor Program supplies survival statistics for transplants by treatment center and by patient diagnosis and age. Although it is important to be treated at a center experienced in dealing with your particular disease, I also think there is a significant value to being near family and loved ones who can support you through the process.

Hope this helps.

Ruth

[Birgitta-A]

Hi Flowerlady,
I am really sorry that your disease has progressed! We do hope that you can get a SCT and be cured!
Kind regards
Birgitta-A

[Ruth Cuadra]

Paul,

Here is a post about someone who is currently at Baylor for a stem cell transplant.

Regards,
Ruth

[magpie75]

Hello, if you are interested in bone marrow transplant, you are welcome to visit my site. I am currently undergoing bmt for aplastic anemia at Johns Hopkins in Baltimore, MD. I am currently on day +33 after the bmt and doing quite well. My full brother was the donor. To read my story go to www.magpie75.spaces.live.com

I was diagnosed with AA in Feb.06 and started this site in 2006 when I had my first treatment, but the info about bmt starts in late October 08. I hope this will be of some help.

Maggie

[evansmom]

Hi Paul,

Sorry to hear of your situation. I echo Ruth's comments. While it is critically important for you to gather information and learn as much as possible about your bone marrow failure disease, try not to jump too far ahead. One of the mantras that we all likely live by on this forum is taking it one day at a time. The good news is that you have a diagnosis that can be treated, as opposed to getting the news to get your affairs in order...mantra #2...count your blessings.
Should a BMT be recommended, your siblings and half-siblings will be tested. God willing, a match will be identified. If there is no match, the marrow registries will be searched for the best possible unrelated donor.
My son is around 200 days post unrelated BMT and has done very well. He is 11. Of interest, his donor was NOT a perfect match but rather a 9/10. The mismatch was on the allele of DQB1, which is not a super important area of consideration but all that to say that even some imperfect matches can be very successful. The art of bone marrow transplantation has been so refined and perfected over the last 10 years.
So as long as your medical team has very good experience with diagnosing and making recommendations for your bone marrow disease, keep your chin up and your hopes high. We'll all be rooting for you here!

The link to my son's site is below. Feel free to visit.

Best regards,

[gvhdsucks]

Paul36....I've been out almost 10 years like Ruth has. to make a long story short....was 17 when I got the transplant for MDS that turned AML. Now I am 26 and getting ready to turn 27 in the next week.

some tid bits that might help.
1. get treatment where they do a lot of what you need. experience speaks volumes when it comes to something as technical as a BMT.....and oh yeah don't forget about the GVHD which you will get...guaranteed. I still have GVHD and I am trying to email Ruth about that to see what she thinks.
2. NEVER EVER EVER EVER take prednisone for GVHD. Again if you get a doc with experience he/she will know not to use it over other viable alternatives out there. Prednisone and Clobetasol are BAD BAD drugs.
3. and when you feel like warmed over dog **** when your home after the transplant it helps to only take half the dosage of antibacteria/antifungal drugs. I did that all the time and never had an infection at all......maybe I'm an anomoly but the worst I've ever had in 10 years is stomach flu. But never skimp on the immunosuppresents......because you will pay dearly later on.
4. And above all and most important NEVER GIVE UP......KEEP ON KEEPIN' ON!

PS-Ruth please email me.....I need some of your advice on GVHD to see if you have the same problems as I do after 10 years....Geez I'm getting sick and tired of my skin doing whatever it wants.

[Ruth Cuadra]

Hi, welcome to Marrowforums. Your member name certainly says it all! I'm glad your transplant for MDS/AML was successful but sorry your having such a battle with skin GVHD.

I have to disagree with you about the use of prednisone and clobetasol. While prednisone can be a difficult drug for a lot of people to take, it is usually a first-line treatment for chronic graft-versus-host disease. Most drugs have potential benefits and potential problems, but that doesn't mean any one drug is inherently good or bad. The trick to treating GVHD is knowing when and how to use them. For that, you must rely on doctors who can base their recommendations on their experience as well as what's known and published in the medical literature. No single patient's experience (including mine) can provide the answers for everyone.

I also strongly disagree about taking only half the dosage of any prescribed medication. If you have reason to believe that your prescribed dosage is causing problems, you should let your doctor know immediately, decide together what changes to make, and then make those changes with the full knowledge of the doctor.

Regards,
Ruth

[Marlene]

There are two SAA patients who have had photopherisis after the BMT for GVHD. Here's a link on it:

http://emedicine.medscape.com/article/1131176-overview


Also, on the meds, I would talk to your doc. You may need a smaller dose as a result of the way your body detoxes/processes drugs. I know they can test you to see how well you clear toxins/drugs. It's usually a function of the liver. If you don't clear them normally, then they build up causing more side effects. My husband could not tolerate full doses of Exjade or Desferral. Most doc swill prescribe the "standard" dose and they need to know you cannot handle it and need to work with you on this.

We too have a list drugs that are known to cause problems for John that we need to avoid.

[jyakker]

Hi,
I am also new to this forum. I find it very, very helpful! I was diagnosed with AA in 2003 at age 26, and was successfully treated with ATG. This past Sept. I was diagnosed with MDS. I am scheduled for a BMT in early Feb., if all goes well on the donor's end! They have found a donor thankfully, just waiting for a consent to be signed. I am completely scared of the whole ordeal, and basically I am not looking forward to having to take all the different drugs, including prednisone. I remember the nasty side effects from my treatment for AA. But it's hopefully a temporary thing and I will get back to feeling like my normal self again soon.!

Jody

[Ruth Cuadra]

Hi, Jody.

Glad you found us. It's great that you were able to find a donor! So often it's a major stumbling block when you're already dealing with the MDS monster. Where will you be having your transplant? I hope you'll be able to let us know how you're doing. Sharing our experiences and learning from one another makes it all less scary.

Regards,
Ruth

[jyakker]

Hi Ruth,

I will be having my BMT done in Calgary at Foothills Hospital. I will try to get back on the forum and let you know how it goes. After reading your story, I am very hopeful I will have an outcome like yours!

Jody