MDS – The unanswerable areas.

[Malcolm Hughes]

I have constantly been Anaemic since 2011 and been prescribed many courses of Iron tablets over that time. My Haematologist tells me that my body is overloaded with Iron because my red blood cells are not absorbing it and he can’take explain why. I have started a series of intensive blood tests every 3 months to see if there are any changes to my levels.
He cannot at this time say with any certainty Wetherby I do or do not have MDS because my blood levels are very marginal.

[Cecile Huston]

I personally had to have the bone marrow biopsy before they could say for certain I had MDS, even though all my blood work pointed to it.

[Allan Romriell]

It was the same for me, I had low blood counts on a routine physical. I was referred to a hematologist and he sent me for a Marrow Biopsy. I think he suspected MDS but didn’t say anything to me about that till he had the biopsy results. Mine turned out to be MDS-RS and for the most part my only symptom is anemia from low hemoglobin, most other counts stay in the mostly normal range so its wait and watch for now…. good luck to you both

[tam]

I am 64 and was diagnosed with MDS in 2013 based on a bone marrow biopsy. When I learned of my disease I decided to go back to my annual physicals and found a complete blood count done in November 1991. My counts were low then. My doctor at the time brought the low counts to my attention and attributed them to possibly my training for marathons. He did not order follow-up monitoring or a biopsy at that time. My next complete blood count wasn’t until 1998 with a different family doctor. My counts were only slightly higher then but still borderline. From 1998 onward I’ve had a complete blood count nearly every year and have remained on the low end. It wasn’t until 2013 that my doctor decided to refer me to a hematologist who ordered a biopsy. My counts have changed very little over the last 26 years. In 1991 my counts were as follows: platelets 134, RBC 3.9, WBC 4.0, and hemoglobin 12.8. I am basically at these same levels now. I am in wait and see mode and continue to have a very active lifestyle. It’s possible I’ve had MDS-unclassified for over 26 years. During that time period I have not noticed unusual bleeding, higher than normal infections, or tiredness.

[Brenda Peacock]

Hi I am 55 female recently diagnosed with MDS I after being hospitalized for an open wound that wouldn’t heal. I was anemic and my wbc count 0.6 then gradually went up to 2.3. My oncologist decided I needed Sucrose Iron, which made my ferritin levels over 500. That concerns me since my other Dr. Didn’t ever mention the the Sucrose Iron. Now my wbc have dropped to 1000 and nuetrophils at 500. What would cause the level to drop. I had a a little bit of a cold but have been over that for a week now. My RBC are 12.4 and platelets have gone from 123 to 98. I feel fine but was told to be careful of infection. I was never told what class of MDS I have (afraid to ask) but they say its low risk and have no blasts. I wonder if I need a 2nd opinion. My Oncologist told me to stay away from the big University hospitals. That they would just use me as a guinea pig. Any insight?

[Cecile Huston]

well as far as the big university hospitals go, KU in Kansas City diagnosed my MDS, (had 2 bone marrow biopsies to make sure, I am doing a clinical trial and have had 2 more biopsies since June when I started treatment, I have 7 vidaza chemo each month and then 2 of the clinical trials, I have not gotten a lot better, BUT I am no worse, some levels are better, white blood count was 2.9 yesterday so have to watch for infections, have been on antibiotics 3 times this year, I told my Dr. put me on anything that will give me life, the only cure is a bone marrow transplant, and at 75 that is not an option for me, so I take whatever they can do for me to give me the quality of life I have, I am a 4 on the scale so I need all the help I can get, what works for one person is not good for another, but I love my KU Med center, the nurses, Dr’s and everyone are professional and so good to us.

[bchgal]

I am a 68 year old female who has been “low on iron” since my late 20’s. Seven years ago I went to the ER with heart attack symptoms, found my Hgb a 7.3. After my first transfusion I could breathe again. Hematologist put me on series on iron sucrose infusiions with a couple of units of blood transfusions in 2016, and 2017. Had a BMB in Jan 2017 and diagnosed with MDS RA, started me on procrit varying dosages depending on Hgb and HCT with blood draws every two weeks. In January 2018 mh Hgb fell to 6.5, I had two blood transfusions and a series of iron sucrose infusions through Jan and Feb.
I am going in for my second BMB tomorrow to see the progress of this disease. Health provider does not want Hgb to go over 10 due to more likely for heart attack / stroke with the procrit. I am not active and gaining weight due to months and years of inactivity and no will power. Today, I can tell I Hgb is at around 9, as I can walk to mail box without chest pain and shortness of breath. I am aware there are many sub MDS, however, I have found no one commenting on iron sucrose infusions for anemia, anyone out there?

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