May 23, 2019 at 9:18 pm #46789
I hope today finds everyone feeling good. It has been more than several months since I have posted. My husband Leon is almost 63 and two years ago we started a wait and watch journey; his hemo/onco strongly suspecting pre-MDS.
In the early days I became quite obsessed with researching trying to learn as much as I could about this condition and found myself here on this site. I met people who were so kind and informative. I think the greatest thing I gained while actively here was the human element, everyday life of this disease and how so many of you learned how to cope. Your stories were heart-wrenching in some cases but the strength and determination so remarkable. This really helped put things into better perspective. In my 57 years the only time I found ignorance to be bliss was during the teenage years of each one of our four children ha ha ha.
Leon‘s red blood cell count has been mild to moderately low and he has been anemic now for over two years. His bone marrow biopsy showed a hypercellular bone marrow (65%) with macrocytic red blood cells and 3% blasts. He had an abnormally high iron store count But there were no chromosomal changes at that time. While his CBCs stayed pretty much the same, he did begin to develop some very atypical a fib and a fib flutter. This kept us preoccupied on the heart and while his blood counts seem to just stay the same albeit abnormally low on the red blood cell side.
Sadly the second week of March things started to change a bit, not only was his red blood cell count low but his white blood cell count, absolute neutrophils, started getting low. He then caught a very nasty virus that attacked his throat and tonsils, two weeks later thought he was getting better and then tested positive for influenza A which really knocked him down. To boot, his heart started acting up and they hospitalized him for a week to try and regulate all the electrical issues of his heart which was probably being exacerbated by the fact that he was fighting these viral infections. They found bands in his blood and his blood counts were getting low, hemoglobin almost in the 9 range. It was the first time in 36 years of marriage that I watched my husband have back to back illnesses and it really took it out of him. He is so strong and always energetic even with the anemia. I never saw him this sick ever.
What really unnerved me this visit was the doctor himself had a much more serious demeanor. They will be taking blood again in two weeks and then two weeks after that. If his counts do not improve, he explained to Leon that he would have to do another bone marrow biopsy that perhaps he has gone from the pre-MDS to MDS, or something else. His doctor is usually so very upbeat and cautious but this time we noticed a difference. My prayer is that we are over this challenging hump and maybe his accounts will creep up a bit and we can go back to mildly anemic.
Anyway I felt the need to come back to this wonderful group of people and give an update. I hope everyone is able to enjoy this memorial day weekend.May 28, 2019 at 10:56 am #46798
Dear Melissa, I know this is a difficult situation for you and I would recommend that you take your husband to one of our Centers of Excellence in MDS for a second opinion. He should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment.
Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have a wonderful educational resources available which we can send you via postal mail. If this is something that you would be interested in, please forward your mailing address to firstname.lastname@example.org. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/. I hope this information helps.
May 28, 2019 at 6:32 pm #46801
- This reply was modified 2 weeks, 6 days ago by mdsfound.
Thank you. We are going to obtain the next two CBC results (taken over next 5 weeks). If Leon’s Hemo still recommends another BMB, I thought it might be time to schedule with a specialist at the Sydney Kimmel (HOPKINS). I will take a look at this information.
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