Newly diagnosed with a question.
 

I am a 39 year old father of two with a loving and supportive wife. I was diagnosed with MDS in August. I have been chasing a diagnosis since I went to get a physical in June and my CBC indicated I was anemic. I am currently going to the Mayo Clinic in Jacksonville. The hematologist that I originally went to called me a enigma, in that I should feel horrible but I don't and Thanking God have not been very sick. He actually sent me to Mayo. I was placed on the BMT list and my sister was tested and she was not a match. The transplant coordinator told me that on a preliminary search I had 244 possible matches on the national registry? He said that was very good. Is it? I want to get this started so it can be over.. I am tired of letting MDS throw punches at me, I am ready to start hitting back

Cam;
That many matches are great - and I wish you the best of luck. You have a good attitude to start with - and that certainly does help. Of course - being a father is a great motivator as well.
But, I would advise you to start keeping a journal, and have all of your blood counts, tests, etc. there so that in the future - if you would somehow need to have your records transferred - you would already have a lot of them. Make sure you get copies of any BMB's that are done.
The forum is a wonderful place to get information, and the support and caring from the group are fantastic. Again, much luck to you.

Beth

I was exactly like you when first diagnosed and actually still just want tho get going so I can get back to living without this ruling my every thought! I was originally told I was "generic" so shouldn't have an issue finding a registry match (my 3 siblings didn't match). However I believe while I match on initial testing when they delve further in (sorry you will have to call on some of the other more knowledgeable ones for technical details ) I didn't match with anyone perfectly. So lots of layers involved to their testing I believe?Then they still need to find the person and assure they are still physically able to donate & willing. However you are off to a good start with that number of initial matches. Good luck.. can I ask what type of MDS do you have? Blast levels? But definitely understand your frustration and wish you all the best with your journey..hope it goes fast for you..

Cam,

The Mayo Clinic is an excellent MDS treatment center, so I'm glad you have that going for you.

Do you know what your blood count numbers are? One of ironies of MDS is that you can have a serious disease with very little clue that something is wrong. However, if your counts are low enough then you'll feel symptoms.

There was only a 25% chance that your sister would match you (it's a test for inherited blood antigens called HLA). Siblings are the best donors, other things being equal, so they get tested first. When you look for matches in the national bone marrow registry, the odds depend on whether you have an HLA type that is common in the overall population or whether you have a rare HLA type, as well as how many people with similar ancestry have joined the registry. There are a number of Marrowforums members who have not yet found a single match. My wife had 2 matches. It's great that you have hundreds of potential matches.

SLB mentioned the further testing they do. This has to do with the number of antigen "match points" they compare. A preliminary match might be on the 6 major antigens, and a person who matches you that well can be a perfectly good donor. But an ever better match (giving you an even better chance of a successful transplant) can be identified by testing for 10 or 12 match points. The more points that match, the better that donor is likely to be.

Did you have a talk with a Mayo Clinic hematologist about having a transplant vs. other choices, such as drug treatments? Perhaps it's clear to them why a BMT is the best choice based on what your tests showed. Perhaps you have a very high "blast count" (the number of blood cells that have not yet matured in your bone marrow). If you have questions about the treatment decision, now is the time to ask!

I have been diagnosed with MDS intermediate 1. My last CBC my redblood cell count was 9.6 (after getting to bags of blood the previous Sunday) and my ANC was .86. I work at an Elementary school so I was told to go home because my numbers have gotten to low. The reason my hematologist decided on a transpant was that he wants to cure me... He told me it would be a rough road but he could get me through it... He does a lot of research on MDS.

Cam: It took 3 months for my diagnosis. I was told I was anemic as well. But I did get diagnosed properly and am 1 year and 10 months post transplant. It is a long road and requires good support to care for you when you come home. It is so worth it! I was very scared in the beginning - but the alternative was not good. Hang in there and I will put you in my prayers.

Thank you Lori... We are still a little freaked out by this. Like I said I feel mostly fine, just on paper it is all going down hill... We shall see what my weekly blood work looks like...

Hi Cam,

Do you know what subtype of MDS you are - like RA, RCMD, RAEB I or II, etc. ? Do you have chromosome abnormalities? It is good to fully understand why you are being told to rush towards a transplant.

I found out today that I have 4 definite matches. 2 are 100 percent matches and the other 2 99 percent. I go back ot the hospital tomorrow to start my medical work up to make sure I can go through the BMT. For those that asked why we are going for the BMT versus other therapies. I told the Doctor I wanted what ever would give me the best chance of watching my 2 kids graduate from college and he said this was it. My original hematologist wrote the book on most of this (found this out from my new Dr.) and they both agreed this is the best thing for me. So at least I am moving in the right direction.

Congratulations Cam. That's excellent news and so fast too. Good luck and all the best on your journey. Keep posting updates.

My heart goes out to you as I too was diagnosed in August following a very serious incident with first-time diverticulitis. My doctor at the time put me on 2000 mg Metronidazole and 2000 mg of Cipro and I am wondering if the former could have triggered the MDS. I am sorry your sister is not a match (mine would not be either as she does not have a spleen) but I think it is good news that there are so many possible matches on the registry. You are being seen at one of the best medical centres in the world so I hope you feel confident about their recommendations. Have you discussed alternatives to BMT? Have you been told when BMT would take place? Are you aware of the BMT that Robyn Roberts of GMA had recently. She has brought a lot of awareness to the Syndrome.
Take a deep breath and know that we are all here to support you on this journey.:D

Cam, Keep us updated. Think positive and lean into this disease!

I have begun getting my medical tests done so that we can proceed with the transplant. I have volunteered to spend Christmas there if that is an option. I am ready to get this over and get my time back with my boys. My immunity has dropped to the point I have become a hermit in my own house. If they get the sniffles I am sent to the upstairs... Ready to get this going....

Good luck to you! I'll be keeping you in prayer and watching for updates.

I saw my Dr. last week and asked about other treatments for my MDS. He said the others are just a bandaid, the transplant will cure me. That is his plan to cure me. I had another transfusion and he told me to plan to spend Christmas in the hospital.

Cam;
Again, I wish you much luck. Make sure you have some of the disposable paper masks around so that if someone does come to visit you before you go to the hospital - you protect yourself. Being neutropenic really subjects you to every little infection, and like you said, you don't want anything to stop this transplant. I wish my husband was younger - and I am still going to check into a stem cell transplant and hope that he can find a match. Medicare does not want to spend money on 'old' people. But to me - 66 is not old. Take care of yourself, and good luck.

Beth

Thanks to everyone for the kind words. I am lucky that I have friends who are nurses and when they found out about my lowered immunity they brought me masks...

Wow Cam..you have a great doctor/team. In reading all these posts - you have a great attitude as well. Have to say you are young. That I think is a good thing - according to our doctors it's one strength that Lee has in all this...when we talked to the doctor about trying something other then a BMT - one thing that was told to us several times...Lee is 56 and relatively healthy - that is a huge strength, if he got to remission through other treatments for say 5 or 10 years, that could change and perhaps he wouldn't even be a candidate. He is high intermediate and moved there from low risk quickly.

Like you, Lee had no symptoms really - he had been admitted back last october with some kind of hemoglobin problem following a flu/cold that they say is unrelated but I don't know. But in May he was just shortwinded, and got steadily worse, he had been like that in Oct to, but had a cough to back then, finally I convinced him to go to the doc who ran bloodwork and admitted him right away with hemoglobin at 4.8..they couldn't believe he actually walked on his own. They took a bone biopsy before releasing him after 5 days and four transfusions and from that biopsy found the mds. It's been quite the ride ever since, we honestly spend as much if not more time at the hospital then we do at home.

So again, the best of luck to you - I think you have a great doctor and team who will take care of you - there are soooooo many horror stories out there, it's nice to hear a good one. Keep us posted, will be praying for you and your family and watching for your posts.

Best wishes, Cam! I had my transplant over Thanksgiving/Christmas 2010 and it was the best present I ever had!

Keep us posted..or have the family keep us posted!
 

Cam, keep positive, keep moving, keep looking to the future.
There has been so much research and implementation of new evidence based medicine especially in how to treat GVHD or should I say prevent. We will keep you and your family in our prayers. If you need support and encourage call or email me.My husband has never lost the "positive". He is now 378 post transplant and doing well.

Cam, you are in my prayers and wishing you the very best with the upcoming BMT.
I lived in The Villages, Fl. when diagnosed with MDS, but now in my home state of Pa. I attended a seminar at Jacksonville in March, 2011 and the speaker was, Alvaro Moreno-Aspitia, MD of the Mayo Clinic. I am curious if he is your MDS doctor.
Our love and prayers to you and your family.
Bob Scekeres

My Doctor is Foran. He is great and has done lots of research in the field..

Oh I now have a date, I will be going to Mayo the week after Thanksgiving for my BMT. I am hoping to be home by Christmas...

Yes, you have a winner with Dr. Foran, as AllState advertises "you are in good hands"

My wife's brother and family live in the Mandarin area of JAX.

Bob