RAEB 1

[Cecile Huston]

I was diagnosed with MDS in April 2017, I started Vidaza in June after 2 bone marrow biopsies, 28 day cycle of 7 Vidaza and 2 a clinical trial, I am RAEB 1 with complex cytogenetics, RIPSS 6.5 VERY HIGH RISK, the Vidaza caused my skin to break out very bad so the 2nd cycle was thru my port. I had my 5th BMB last Weds and results are good, no signs of AML, and my numbers stay consistent, I am getting no worse, so this is giving me time. I am 75 yrs old and had breast cancer in 2000 and 2003 with chemo and radiation which caused my MDS. I just had my 83rd treatment today. So for me the vidaza and clinical trial is working for me, my Dr. is very pleased. My main problem is getting an infection so I am on a daily antibiotic as a precaution.

[Allan Romriell]

Cecile,
So glad to hear things are stable for you right now. Its great that the Vidaza is being effective for you right now. I have been fortunate to not require any treatments yet and hope that when I get to that stage something will work for me. All the best.
Allan

[Cecile Huston]

Allen, thanks for the kind words, MDS is a learning process for all us with it, as there are so many different degrees. I hope you stay where you are and never need treatment, I am told if I quit treatment, I would maybe have 2 yrs, either go to AML or get an infection so the treatment is my only option and I am fine with that.

[Allan Romriell]

Cecile,
Yes my oncologist has said that once treatment is needed you don’t really stop it as there is no real cure other than a successful marrow transplant which has its own risks and problems. Looks like we were diagnosed about the same time. I had routine blood work in april of 2017 that lead to a BMB and the MDS diagnosis. At the time my oncologist said I might have a year or 2 before treatment would be needed. He has now increased that to maybe 3 to 5 years so I hope he is right and who knows, I may go longer than that. I hope all continues stable for you as well. Take care, all the best.
Allan

[Cecile Huston]

Yes, it does look like we were diagnosed at the same time, April 2017, I had looked into the bone marrow transplant but at my age, 75, the risks are too much. I will continue with my 9 treatments a month, which are keeping me stable so far, mine is RIPPSS: 6.5 very high risk so what we are doing is the best for me. I hope for you that yours does not get any worse. I have had blood work every April since my breast cancer in 2000 so this is how it was first caught and then the BMB, so it is all ok. Take care of yourself as well. CeCe (Cecile)

[Allan Romriell]

CeCe,
Love the nick name,(Cecile is a very pretty name as well) we have a daughter Melissa who is called MeMe by her sisters and most of the nieces and nephews. Just wishing you continued good luck in your treatment. I doubt unless something changes in the next few yrs I would op for a transplant. As you said, the risks are quite high. I am 65 now and if my dr is right I may not need any treatment until I am in my 70’s so would probably do the same as you. Once again, all the best to you and yours, I do hope you have many more good yrs.
Allan

[Cecile Huston]

thanks Allan, my grandpas name was Cecil so add an E and you get Cecile, which gets mispronounced so much, hence the CeCe which does not get messed up, even my nurses call me CeCe You take care and stay on top of it. I just had my 86th chemo yesterday, going for 1,000 LOL .

[Allan Romriell]

That’s the spirit, like the Eagles song says “Take it to The Limit….. See you down the road a ways….
Al

[diana]

Allan,
Glad you have Low risk MDS.
Wonder have you ever been evaluated blood B12 and folate?
Do you take zinc supplement?

I am not a doctor. I am 66. I was diagnosed MDS by BMB in September 2017. low RBC, WBÇ, normal cytogenetic studies and ferritin 355(reference range (15-150). And I came across MDS and copper deficiency and was curious and read quite a bit.

Copper deficiency mimicking myelodysplastic syndrome. If you google copper deficient related MDS….
below I copied the abstract from
https://academic.oup.com/ajcp/article/132/2/191/1760389
“Copper deficiency is likely an underrecognized cause of anemia and neutropenia and may masquerade as a myelodysplastic syndrome (MDS). We report 2 cases of copper deficiency in which the diagnosis was suggested based on the characteristic morphologic findings, such as cytoplasmic vacuolization of erythroid and myeloid precursors and iron-containing plasma cells. It is interesting that both patients had hematogone hyperplasia. This phenomenon, largely absent in MDS, may aid in distinguishing nonclonal causes of cytopenias, such as copper deficiency, from MDS. It is of crucial importance to identify treatable causes of cytopenias when MDS is suspected. We recommend copper level assessment in patients suspected of having low-grade MDS, especially patients with neuropathy and normal results of cytogenetic studies.”

[Allan Romriell]

Diana,
Thanks for the info. I was evaluated for B12, also a few other possible options for my low counts. Bone Marrow Biopsy confirmed MDS RARS variation. The ringed sideroblasts are a definite give away for MDS I understand and that’s what I have. So far I have been pretty stable and I will hope and pray it stays that way for many many months, or years. Hope all goes well for you, thanks again for the input.

[Donna]

Diana………….The article, although way above my head, is interesting. Donna

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