27 and recently dx with MDS

[Rosie]

Hi everyone,

I'm new to MDS as I was just diagnosed on Wednesday after having a bone marrow biopsy done. I don't really know what to expect seeing as I'm 27 and there aren't a lot of stats for young people with MDS.

I'm getting weekly blood draws and seeing an oncologist weekly until we have a better idea of what we're dealing with as far as progression goes.

Do any of you know of anyone around my age with MDS? I've searched online, but haven't had any luck.

Thanks!

[squirrellypoo]

Hi Rosie.

Yeah you're right, there aren't many of us young'uns! I was 29 when I was diagnosed with AA/hypo-MDS two years ago, and Laura is a little bit younger than me, too (we've both got threads in the Transplants section if you want to have a read, though Laura had AA rather than MDS).

The good news is that because we're younger, we're also generally stronger and more resilient so we can bounce back a little easier from the treatments in store. But adversely, things like transplants and chemo really screw up your hormones and chances for future children, which aren't quite so big a factor for older people (for example, I had to do IVF to freeze embryos before my transplant, and even now, 1.5 years later, I'm STILL seeing experts to sort out my hormones).

Have you had any further details on your diagnosis or treatment options? There are tons of different flavours of MDS and about as many treatments, too.

cheers, melissa

[sonia s]

My mom was told years ago that her bone marrow wasn't normal but they didn't do anything about it.

Now she has platelets of 5 and has Leukemia. Myelodysplasia is a pre-leukemia.

A bone marrow transplant is the only way to get rid of the bad marrow for a chance that the new transplanted cells can grow.

Otherwise, it's a waiting game.

Good Luck.

[Rosie]

So far, what he's told me is that he's checking my EPO levels to see if I'm able to get the weekly shots instead of getting so many transfusions. He also sent my sample to get my chromosomes checked to see what kind of MDS I have.

I'm worried about how the treatments will effect my fertility, since we struggled with infertility for over 2 years to conceive our son. And we definitely want at least another child.

[Hopeful]

Hi Rosie,

If you don't have chromosome abnormalities or *significant* dysplasia, you may not have MDS. Are you seeing an expert in bone marrow failure diseases? If not, this is a good time to seek a second opinion, just to be sure. Where are you in California and who are you seeing?

[Julianna]

Hi Rosie. I am another (well semi-youngin') here. It is really tough waiting for all the tests and things to come back. Well, we'll be here to ask any questions if you need. It would be great if you can get injections instead of transfusions. That will help if you ever need transplant in the future. Take care. Julie

[Rosie]

Thanks for your responses.

Today I had another appointment and he told me that the cytogenics stuff came back clear, but he said my cells are showing dysplasia.

After my transfusion 2 weeks ago (2/14), my HGB was at 11.7 (up from 6.6). Tuesday it was at 9.1, so there's a steady decline.

My EPO was at 125, so he started me on weekly Procrit shots.

Hopeful: I'm in Southern California. My doctor is a hemotologist/oncologist. He's also a professor at Harbor-UCLA Medical. He sent my samples to USC for a second opinion, but we're still waiting to hear back.

[Hopeful]

I consult with Dr. Paquette at UCLA-Ronald Reagan Medical Center.
His speciality is bone marrow failure and he is excellent.

He also is an expert in aplastic anemia (which is rarer than MDS, so you really need to see an expert to differentiate). Some dysplasia can be seen with aplastic anemia, especially in the absence of cytogenetic abnormalities.

I'd recommend consulting with him. You may be a good candidate for IST or BMT because of your young age.

What is your bone marrow cellularity?

[cathybee1]

I would also like to concur about getting another opinion from Dr. Paquette in Westwood. We saw 2 hematologist/oncologists (one at the University Medical School in Portland) before seeing Dr. Paquette, and he was the most helpful and knowledgeable. At this point, you want to find someone who is an MDS Specialist.

[carolyn]

Hi Rosie,

You are not alone! I am 26 and was diagnosed with MDS in Nov 09 when I was 25. I was found to have slightly hypocellular bone marrow when I was only 15, but was never given a definitive diagnosis. I had a similar diagnosis to you, my cells show displasia but my cytogenics were clear too, thankfully. I am being watched, getting bloods takes every 6 months. I hope you get a clearer picture soon on what the treatment will be, as Melissa says, you are young and otherwise healthy so in a good position.

take care

Carolyn

[Rosie]

What lead the doc to think I had MDS was a drop in my RBCs. I went into the ER one night for stomach pain and when they drew my blood, my HGB was at 8 and my HCT was at 23.4

Then, 12 days later, I went back to the ER with palpitations and chest pain. When they drew my blood, my HGB was at 6.6 and my HCT was 19.6. The fact that it had dropped so much so fast led them to investigate.

The hematopathology report just came back showing some scarring on the marrow, so now they're suspecting I have myelofibrosis, but they're not sure. They're also trying to rule out an autoimmune disorder.

The hematopathology report came back saying my RBC precursors were at 50% and my cellularity was closer to 100% which is very odd.

It's very frustrating to not have answers or know what's really causing my problems, but I'm trying to keep a positive outlook and remain hopeful.

[jojo4983]

Hi rosie,
i have read that you have just been diagnosed with MDS, really sorry to hear this.
i got diagnosed in november 2010, i was feeling tied all the time and i went to the gp, they did blood test and i was told to go to my local hospital, i was in shock what was up with me, when i arrived at the hospital they told me that my blood counts was low and i needed a blood transfusion and that they needed to do a bone marrow biopsy, i was very scared what was happening!.
The results took over a week to come back and they confirmed it was MDS, i was so upset, i mean im a 27 year old mum with 2 young kids (girl 3, boy 1).
I have RABE 2, i have now started a cemotheropy drug called Vidaza, but still needing blood monthly, i am coping well but i do find it very hard! I have another bone marrow biopsy on 25 march to see if the vidaza is working. I am also gonna have a Bone Marrow Transplant, i have 2 sisters but there wasnt a match, so they are looking for a match for me, i will go to my bone marrow transplant consultant again on 13 april, hopefully they will have a match for me!
All i can say rosie is keep strong and think positive.
If you have any questions please let me know.
And i agree with you that there is not alot of young people with MDS, i have been searching lots too.
Take Care

[ramey2148]

Rosie,
Sorry to hhear about your diagnosis, but you are not alone. I was told I had MDS in Feb. 2010 at the age of 32. My MDS turned to AML in June of 2010. My DR. (DR. Kropf), at Temple Jeanes Clinic, advised me I needed a bone marrow transplant. My brothers were not a match so they had to go to the search. They found a 9 out of 10 match, and I was transplanted Aug. 31st. The process was not an easy one but it gets better. A positive attitude will do you a world of good. Listen to your body. If you are tired, take a nap. I would recomend freezing some embryos before you go through treatment. I had to freeze my sperm and good thing I did because it is dead now. I am also happy to say my wife is 12 weeks 4 days! I hope you have a good support group as well because it will change your life style for a while. Best of luck with everything and I always say we only have 1 life so you better fight for it. Hope everyone has a GREAT day today!
Bob