Diagnosed in October 2010

[Chris B.]

Hello everyone! I would like to share my experiences with MDS and hear your comments.
I am 46 years old with no other health problems. Over the last year, I have been progressively feeling fatigued, light-headed with mild exertion, and finding it hard to concentrate. It wasn’t until one of my co-workers told me I looked pale and I admitted I felt pretty crappy. My Hgb was 7.8 when I went to the doctor the next day. This was the first week in August. I was immediately scheduled for a transfusion. This brought my Hgb up to 9.0 so I had another transfusion bringing the count up to 11.2. My Dr. had me come back in one month to be rechecked and my Hgb dropped to 8.9. I was then referred to a Hemotologist who did more blood test to rule out Iron and B12 deficiency. I was high with those counts so he did a bone marrow Biopsy. Initially he said I was low risk MDS then my chromosome slides came back abnormal so he bumped me up to intermediate-1. I had a shot of Aranesp 500mcg a couple weeks ago but my Hgb actually dropped to 8.1 after that so I had another transfusion a few days ago. Meanwhile my Dr. has recommended for me to see a transplant Dr to consult for possible BMT. I’m now waiting for appt.
For all of you experienced MDS experts, does everything I explained sound reasonable to you?

[Kenneth_In_Va]

Hey Chris,

Sounds a lot like my experience between August and October. Did the Hematologist give you a diagnosis like Macrocytic Anemia?
What are the findings from your Bone Marrow Biopsy? Are there any references to which chromosomes are abnormal? Any references to blast count?
The BMB results are the best information to go by as to what is up.
Sorry to be "meeting" you on this forum but its a great place to come for info and help. This disease can be different with each one of us because of the specific chromosomal changes each have and all the combination’s and permutation’s.

Send me some more details. I’ll help if I can and if I can’t, I know others will.

Gene In Va.

[Chris B.]

I will get more specific information regarding my bone marrow biopsy and post it soon. I’ve just been so caught up in everything I haven’t asked for specifics relating to my diagnosis yet.
Thanks for replying!

[g-masews]

Ask for a copy of everything. Pathology reports, CBC’s, etc. It won’t make any sense to you for a while, but as you learn more, you will be able to read them better. You can’t possibly remember all the dr.’s tell you so keep all your reports in a file to refer to as you go along.

[Kenneth_In_Va]

I second what g-masews said. My paperwork folder is nearly 3 inches thick. I also graph my CBC #’s. It makes me feel like I’m in control. (I know I’m really Not.

Gene In Va.

[Chris B.]

Thanks for the advice! I am seeing my oncologist tomorrow and will ask for printouts of all my tests so far.

Thanks again, Chris

[Chris B.]

Just got back from my Hematologist/Oncologist. Here are my Bone Marrow Biopsy results. Hypercellular marrow(90%), ME ratio 1.3, moderate dyserythropoiesis, dysmegakaryopoiesis. Stainable iron markedly increased, ringed sideroblasts >50%, Blasts 2.4%, BCR/ABL negative, JAK2 mutation negative, Cytogenics showed trisomy 8 in 4/200 cells examined.

DR said if I do nothing I would most likely be transfusion dependent and live 10-15 years. He recommends me getting a BMT based on my age to possibly cure my MDS.

My Hgb was prior to transfusion last Friday 8.1, had bloodwork today. No results yet.

[Kenneth_In_Va]

Chris,
Good to hear that the Doc. have ruled out some of the Chronic Myleo-proliferative Syndromes with the negative results on the BCR/ABL. My first BMB showed elevated marrow hypercellularity also but since I have had no enlargement of my spleen we’ve been concentrating on the MDS side of the MDS/MPD picture.

Any results from your last bloodwork yet?

Gene In Va.

[Chris B.]

My Hgb jumped up to 10.0 from 8.1. No super increase in energy but I feel a bit better. My Dr wants to continue with the Aranesp shots for a couple months to see if they are effective. I have a appt to see BMT specialist on Tuesday. I think I’m reading too much on the internet. I just read that 50% of people with the Trisomy 8 chromosome abberation have their MDS turn into AML.

[Kenneth_In_Va]

Chris,

The internet is a dangerous place when it comes to doing "generic research" on a very "not generic" disease like MDS!
Much of the information is 5-8 years old. As such, the percentage and the prognoses are based on the medications and treatments available then. Revlimid, Vidaza and Dacogen were still in clinical studies then.
Make sure to only look at abstracts from literature dated in the last 2-3 years. I get updated article abstracts from http://www.pubmed.com. These are for the major medical journals but you don’t have to pay for the abstracts, only for the full articles.
Don’t let older information scare you.

Gene In Va.

[Chris B.]

Thanks for the advice on the internet research. Well, I’m resigned to do what I can regarding treatment and whatever else happens is meant to be. I have a positive attitude but I know I have no control of the situation other than following Dr’s advice for treatment. I really appreciate this support forum.

Chris in WI.

[ramey2148]

Chris,
I am 33 and was diagnosed at 32 with MDS. Keeping a possitive attitude is the best thing you can do because it is out of your control. My MDS turned to AML and I had a BMT Aug 31st. If you want to read about the BMT you can go back and look at Jersey Guy feed and I kept everyone posted on how I was feeling going through it. Hope everyone is having a good day.
Bob

[Chris B.]

I just saw the head BMT Dr at UW Hospital in Madison today and he recommended me to have a BMT. They are sending my sister a kit to be typed. Hopefully she is a match, otherwise Dr said there are 10 million bone marrow donors in the registry and chances of a match are 1 in a million so there are 10 potential matches in the United States. Dr also downgraded my IPSS score so I went from a intermediate-1 risk to intermediate-2.

Chris in WI

[Chris B.]

Hello,
Went to Dr. today for my monthly Aranesp injection. They did a CBC beforehand(took them 4 sticks to find a vein)and my Hgb dropped from 10.0 to 8.7 in one week. When they drew blood they did a type and cross match just in case I was 8 or below. I’m assuming by the end of next week I will need another transfusion unless the Aranesp does what it is spose to do. Does anyone else have a problem with their veins disappearing and hard to locate for blood draws?

Chris in WI

[Chris B.]

HGb dropped down to 7.7 as of yesterday. I was typed and crossed today and will go in for another transfusion tomorrow. So it will be less than a month between transfusions even with getting Aranesp shots. Doesn’t look like they are working so wonder if I will be taken off the Aranesp. I wonder why they can’t just transfuse enough blood to make you feel better? The two units they give me barely puts me on the fringe of feeling "ok".
Meanwhile I’m waiting for the results to see if my sister is a match for the BMT. Crossing my fingers! Take Care everyone!

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