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Allan RomriellParticipant
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.
AllanAllan RomriellParticipantClair,
I was diagnosed with MDS RARS in June of last year. In my research it seems to be on of the lowest risk forms of MDS you can have. I do not have a lot of experience yet with it but I feel free to ask me any questions you may have. Thanks,
AllanAllan RomriellParticipantCecile,
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.
AllanAllan RomriellParticipantChris,
Saw your question in the other thread and figured I would answer it here. My MDS version is RS which primarily effects the red blood cells and hemoglobin so one of the few symptoms I have is fatigue and shortness of breath. I mainly experience shortness of breathe when exerting myself and conclude that it is due to less oxygen due to fewer red blood cells to carry it. I have not tried oxygen, but I don’t get to the point of feeling faint just winded and I sit down and things return to normal in a few minutes. I would think that oxygen would help in that it would allow what red cells there are to carry maximum available. I would be interested if any one has tried this as well. Its not something I had thought of until your question so thank you for asking it.Allan RomriellParticipantThanks Chris,
Makes sense to me too. I have had more joint pain as I have aged, a natural progression and old injuries that had not hurt for years started to ache again but I noticed a marked increase about a year ago before I was diagnosed.
At the time I just thought it was age catching me but I think it has to do with the MDS. It continues to get a little worse as I go along and just make sense as many of the joints that hurt are associated with the large bones that contain most of the marrow that is effected. I like you are more careful in how I do things so as not to aggravate the situation. Best of luck to you. Thanks again for the input.
AllanAllan RomriellParticipantCecile,
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.
AllanAllan RomriellParticipantLyssa,
Yes getting a handle on the new “lingo” takes time and I still don’t understand some of it. Hope they get you some answers soon. I had a good weekend, didn’t do much and rested up, so feel pretty good to start the week.
Take care,
AllanAllan RomriellParticipantChris,
Pretty much how I feel. In the research I have done there doesn’t appear to be any benefit to being treated before it is necessary. Also it seems for most people any of the drugs used only work for a period of time so I don’t want to start on any of them until I have too. My oncologist seems to feel the same, he doesn’t want to put me on anything as long I as am staying fairly stable. Good luck to you in your battle.
AllanAllan RomriellParticipantGerry, just answered you in another post, but yes seems we are in much the same boat. I was pretty blind sided by this as I have never had any real health problems and was not really showing any symptoms at the time of diagnosis. I do feel the effects now and can see a drop in energy from a year ago. Of course at our age every year is like dog years, we age more than we did in a year in our 30’s. Anyway most days I feel pretty good and can do most everything I want. I hope things progress slowly for you as well, I have read that low risk cases can survive for many years and I hope we can take that road. Good luck and keep in touch. This is a good site to get info and encouragement.
AllanAllan RomriellParticipantGerry,
I was diagnosed with MDS-RS june of 2017 at 64 1/2 yrs old. I was referred to a hematologist after routine blood work showed platelets at 75,000 roughly 1/2 of low normal. A bone marrow biopsy revealed the MDS and I have been on watch and wait since then. The RS version usually effects mainly red blood cells and that is the case with me. My blood counts have been fairly stable since late summer and my platelet count has returned to normal. Whiteblood cells are ok, but hemoglobin runs in the 11’s (low) and hematocrit is 36-37% which is low. My only symptoms are fatigue and shortness of breathe when exerting myself, both quite common with anemia caused by the low red blood cell count. At first my hemo guy wanted to see me every month and check bloodwork etc but I am now on a 3 month schedule as things have been stable for several months. He says I may stay this way for a year or two or more before any treatment may be needed. I know there are several drugs available to treat different varieties of the disease and not all work for everyone and its somewhat trial and error, but there are many trials ongoing with new drugs and treatments so I hope there will be more answers when I get to a treatment phase. For now my life is mostly normal and will hopefully stay that while for some time. I hope this may help answer some of your questions. Good luck and take care.
AllanAllan RomriellParticipantBest of luck, hope your results are as good as possible.
AllanAllan RomriellParticipantLyssa,
Best of luck. Yes I remember sitting waiting for them to take me to the room for the biopsy. Surreal is the word. I had gone in for a checkup last april, thinking I should get a PSA as well as general checkup(I was 64, now 65). Doc thought things looked pretty good so sent me for blood work. I didn’t hear anything for a couple of weeks so figured all was well. About a month after the visit his nurse calls me to tell me my platelets were 1/2 of what they should be and they had set me up with a hematologist for follow up. He told me my platelets were 75,000 1/2 of low normal, my white count was slightly low and my hemoglobin was 11 so I was anemic and sent me for the BMB. I then followed up with Hemo guy again and he gives me the MDS cancer diagnosis. Sitting there listening to him my head is spinning and my wife and I walked out in a daze. We have 5 children and so started the calls and visits to fill them in plus calls to siblings and visit with my mother(very hard). Now I am almost 9 months since the first call from nurse and my numbers have all improved so that I am only low on the red blood side (as of Jan this yr), my Hemo guy is optimistic and we have learned a lot more about MDS and we are starting to get a handle on where we are and what the future will probably hold. It still messes with my head at times, not how I figured my life would go I guess, I was always very healthy, never sick much or had need for a doctor. You mentioned bilirubin and mine has been moving higher the last few months, now up to 1.6 I believe so I have been trying to drink lemon water everyday and other liver cleansing things to see if I can get it down naturally. Just caught my eye that your husbands is high and that’s the first I have seen others comment on that, so maybe that can be effected by this. Well I hope all goes well for the biopsy, it didn’t hurt too much, I only wanted to cry once… lol …. god bless you both, keep us posted.
AllanAllan RomriellParticipantLyssa,
The Bone Marrow Biopsy should give you some answers, like what specific type of MDS does he have(if indeed MDS is the diagnosis). There are many variations in the disease and are rated from low risk to high risk. Many factors go into rating the severity and the BMB should help your oncologist determine this. My specific type is called RARS and is one of the milder forms. Many of my red blood cells have a ring of iron around the outer wall of the cell, a deformity that keeps them from functioning properly so I am anemic with my hemoglobin around 11.8 and red blood cells low and hematocrit around 37%. My oncologist is happy with the slow progress of the disease so far and has said that I could go 3-5 years before any type of treatment. Life expectancy is based on many things, type of MDS, age, and general health of the patient along with others. Every case is different but if your husband is indeed a low risk form and is in good health other wise he should have a favorable life expectancy. The test today should help you find some answers. I wish you both the best and please keep us informed. Sharing your journey with others helps, at least I know it helps me.
AllanAllan RomriellParticipantRich not sure what it means, but it is opposite of me, I was about 80% which was one of the indicators of MDS according to my oncologist. My hemoglobin is low, yours high, my white count is ok but yours is somewhat low, so we may both have MDS but yours is reacting vastly different from me. Does sound like you maybe need a 2nd opinion or maybe a third. Hoping you can find some answers quickly. Take care.
Allan RomriellParticipantSorry Rich, my problem has been low hemoglobin and red blood cells. Platelets have been low at times but were normal last blood work in Jan. I have always had ok white cell count. I do have the fatigue you are talking about although its not extreme, just harder to get things done and I need many more breaks and rest periods during the day. Lots more aches and pains also. My diagnosis is MDS-RARS confirmed by BMB in JUne 2017. I do hope you get some answers, this disease is hard enough to deal with even with some answers, 4 months is too long to wait to find something out. I know its a complicated disease from all I have read with many, many variations. Good luck.
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