[Andy R]

Definitely a roller coaster ride but you will get through it. I am about to reach one year out from my bone marrow transplant. I recommend you start a blog of your experience. It will help you in keeping a journal and your friends/family can subscribe to it for updates. Please feel free to check mine out at Andys MDS Journal for a walk through my process to recovery.

[Andy R]

If you can, I would recommend Dana Farber out of Boston, MA.

I had my transplant there and they are terrific.

Check out my blog at http://andy-mds-recovery-journal.blogspot.com/ if you want to have a running commentary all the way through diagnosis/treatment and post hospital.

It has links for good questions to ask as well as resources for info.

[Andy R]

Hi Scooter.

I am 45 and just finished getting a stem cell transplant.

If you want all the details as they happened, check my blog out at http://andy-mds-recovery-journal.blogspot.com/

[Andy R]

Hi Mac,

I am 45. I actually had my birthday while in here.

If a patient is significantly older, doctors may not put him/her under the rigors of chemo and the transplant.

Instead, they will maintain levels through transfusions and drugs.

[Andy R]

Hi Mac,

I was diagnosed with MDS in March and was referred by my local oncologist to Dr. Antin at Dana Farber.

Dr. Antin is the department head and senior MDS/ALS researcher at Dana Farber.

Both he and his team have been excellent.

They are very thorough in their explanations and really have their stuff together.

I cant say enough about them. Especially the coordinating nurse Toni Dubeau.

Assuming you go with Dana Farber, they will treat you for the transplant at Brigham and Womens but your care is managed through Dana Farber.

I am actually +8 days from my transplant and in the oncology ward right now.

The nursing staff and their programs have been great all around.

This is the place i would recommend you go if you are addressing treatment.

Please take a look at my blog located at http://andy-mds-recovery-journal.blogspot.com/ for step by step information on how things are going.

[Andy R]

Hi LMZ,

You are right, there isnt a lot out there for younger people afflicted with MDS.

I’m 44 and it took a lot of digging plus some very helpful doctors to get to the bottom of things.

Typically an older patient cannot tolerate the chemo and transplant process so they are usually made comfortable via transfusions and medication. This is more a management of the problem than an outright cure.

A transplant is the way to go to beat this long term.

If you havent had it already, your doctor will likely have you do a bone marrow biopsy to get samples for further analysis. It hurts like hell but it is necessary.

Once done, you will start the match/typing process. If you have siblings, they will be supplied kits to do cheek swabs. Great if they are matches to you but chances are around 40% that they will be.

If siblings are not matches, your typing will be compared on the marrow database.

Odds are, a match will be found there but success depends largely on your demographics.

My match was found in Europe.

While waiting for a match to be found, you will likely see your doctor every couple weeks for blood draws to monitor your red/white/platelet levels.

Ideally, you will be relatively stable with only a slight decline over time but MDS can turn on you quick so they need to be watchful.

[Andy R]

By tests, do you mean blood tests or are you referring to a bone marrow biopsy?

We know it is hard but please try to keep a positive outlook and remain as active as possible.

MDS definitely sucks the energy out of you and, at least in my case, causes joint pain but exercise will help.

This is a long road but MDS is beatable!

Do you mind my asking how old you are?

We wish you the best of luck.

[Andy R]

The conditioning regimen is high dose Busulfex and Fludarabine which starts 7 days before I receive cells.

The graft versus host disease prophylaxis medications are:

Bortezomib (Velcade) which is the "study" medication on the trial. It’s given intravenously on Days +1, 4 and 7.

Methotrexate, intravenous dose given Day +1, 3, 6 and 11.

Tacrolimus (aka Prograf or FK506) will start Day + 3 and continue post transplant.

fun, fun, fun

[Andy R]

Thanks Mary. I was told what chemo drugs I will be on but I cant remember for the life of me. That day was a whirlwind of activity. I sent an inquiry to my RN coordinator. Hopefully I can update this entry soon with more information.

[Andy R]

Hi LMZ,

I am a 44yr old male and found out by accident. Thought I had arthritis but blood tests proved different.

Feel free to check out my blog at http://andy-mds-recovery-journal.blogspot.com.

It may help at least a little.

It goes through a lot of what I’ve had for doctors appointments and such.

[Andy R]

I am being pretty patient right now. My sisters in the UK got their typing kits and are sending them back to Dana Farber. Hopefully we will hear something soon. The way it was described to me, I am an intermediate level 2 risk which is supposedly pretty serious. This means we are going straight to attempting to find a match and not bothering to do Vidaxa or other meds unless the time to find a match takes awhile.

[Andy R]

Wow! That is one hell of a stay. Do they put any restrictions as far as electronics to keep you from climbing the walls? Being unable to use my laptop or Xoom would drive me absolutely crazy.

[Andy R]

What did you go through after the transplant? Were you in the hospital for an extended time?

[Andy R]

Hi Bob,

This was very helpful. I forwarded your response to my sisters in England. Hopefully they can do something with it. One of my sisters had approached her doctor and was told that there is a marrow database she can join but it is for UK residents only. Wonder why they are resistant to taking from siblings who have had children?

Andy

[Andy R]

Wow! I am impressed with 19yrs. I just got diagnosed with MDS and am 44. Stories like this give me hope that I will survive to see my kids grow up.

[Author]

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