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Allan RomriellParticipant
Good luck Mark, see mine again October 17th. I will be 65 in January, diagnosed with Bone Marrow Biopsy in June. Red blood cells low but not bad, other numbers pretty normal. I evidently have the RARS variety of MDS which is evidently one of the better varieties to have( if there is such a thing), on wait and watch so far. I hope you get some better news in October.
Take CareAllan RomriellParticipant64 male diagnosed with RARS in june of this year. On wait and watch as all numbers are pretty good, hemoglobin in the 11’s, other numbers normal or near normal. I really had no symptoms back in may and june when drs were concerned there was an issue based on blood counts. But although numbers are good I am experiencing more shortness of breath, although mild in the last month or so. Has me wondering if the accumulation of time with low hemoglobin starts to have an effect even though you are considered to be within a level that no treatment is necessary. Like I said, not a problem really as it doesn’t really effect my ability to do what I want for the most part, just something that I wasn’t experiencing a few months ago. This is a very confusing illness to say the least. All the best to you both.
Allan RomriellParticipantLynne,
I don’t have an answer to your question as I was just diagnosed with RARS in July 2017 and am in the wait and watch stage at this time with hemoglobin numbers in the 11’s WBC normal and platelets between 98 and 155 since june. I was wondering if you would mind giving me some of your history seeing as how we both have the same variation of MDS. I am 64 yr old male, my Dr noticed low blood count numbers in april during blood workup for a regular physical. He set me up with a specialist who examined me and ordered BMB in June which confirmed MDS-RARS I have been researching all I can but would appreciate any input you may be willing to give of your experience. I realize all cases are different put first hand knowledge would be useful. I also know this is a personal battle and understand if you don’t want to share that with this forum. All the best in your quest. You do pose a good question that I think I will ask next month when I return to my oncologist for my bimonthly follow up.
Thanks again,
AllanAllan RomriellParticipantNatalie, Catherine,
I am pushing 65 and was diagnosed with MDS a few months ago. I am currently in a low risk wait and watch category. I have 3 daughters and I know they are worried for me as well as you both are for your fathers. 12 years ago my dad was diagnosed with inoperable stomach cancer and given 2 months to live. He was a farmer and had worked every day of his life. When he received the diagnosis he never worked another day, just sat down read books, watched movies and called friends on the phone. I was very perplexed by this that he didn’t at least go out to his fields and wander around some or do some lite work and I kind of bothered me somehow. Now that I am facing a similar fate (although with a much longer time line) I sort of understand his actions better. A cancer diagnosis has really messed with my head as well, and although I want to do all I can to prolong my life I can sort of understand a little of your fathers actions I believe. I know I don’t have to tell you to support your dads in their wishes, and I feel for your eventual loss. I still miss my dad, sometimes the loss feels as new as it did 12 years ago. All the best to you both, I truly hope things improve for you both
AllanAllan RomriellParticipantTam,
Thanks for that, I have heard of this before, unfortunately I am quite allergic to many fruits and cherries are one of the worst, they make me quite ill so I have to avoid them. Thanks againAllan RomriellParticipantDeb,
Is the pain relief related to MDS or other issues? I have a hip that I injured many years ago and the last few months had been getting worse, and making it difficult to sleep. As it was getting worse I was diagnosed with MDS so I know hip replacement is out. I have tried several things to get relief when I sleep but with most anti inflamitory drugs being blood thinners I try not to use them much since my diagnosis. My brother lives in Colorado, maybe its time for a visit…..Allan RomriellParticipantSue,
Thank you very much for the info. My platelets have been pretty good over the last 3 months, 98 to 154 thousand and Oncologist seemed very happy with that. Main issue is red cells as I have RARS, but Hemoglobin is in the 11 to 12 range still so once again he is pretty happy with that. I will keep your husbands experience in mind for future reference. I haven’t been light headed really it just seems to be a low grade headache that comes and goes. Might even be from not always sleeping well and its kind of like how my head feels when I have a real short sleep night, kind of groggy, but its not constant so don’t know. I really appreciate your input, I have only been dealing with this since being diagnosed in June so any advice or experience from some one who has been though it is welcome. Thanks again.Allan RomriellParticipantI haven’t had ear aches but I do have head issues, more like a low level headache or pressure in my head…. not really sure how to explain it. As you stated not sure if its MDS related or not…… confusing disease to be sure, feel pretty good at times, pretty tired with lots of aches and pains at others……
Allan RomriellParticipantMark,
I was diagnosed in june of this year from BMB. From what I can tell your Hemoglobin is in normal range, platelets are low but not too bad, not sure what white count numbers should be, but I assume yours are low. My last reading my Oncologist said my white cell count was good but didn’t get a number, my platelets were at 117, and my hemoglobin was 11.8. He told me that we would keep watching and has me coming back in oct. He hasn’t mentioned any treatment yet. I hope to hold off any treatment as long as possible as I know once they start chemo with this disease it doesn’t seem to stop. Have they given you a risk factor or told you the specific variety of MDS you have? Mine is RARS and I am at low risk at the moment. I would certainly want to know what chemo treatment they are considering, I don’t know this is all pretty new and scary to me. I wish you all the best and let us know what the Dr says.Allan RomriellParticipantI was diagnosed in June, currently mine is a wait and watch low risk variety RARS. In my research trying to get a handle on what this disease does I have read several places where a diet high in veggies and fruits is recommended. My oncologist only said good nutrition is important and a multivitamin wouldn’t hurt either. Sorry this probably doesn’t help you much. I haven’t been given any timetable but it seems MDS can turn from mild to high risk on a dime. Good luck to you.
Allan RomriellParticipantSherry,
I am glad you are doing so well. I had seen your name in other posts and wondered how you were. How long did it take you from the wait and see to a treatment stage. I know it can stay that way for a long time or turn rather quickly. I of course hope for a long wait and watch phase but I feel like a ticking time bomb sometimes wondering when I will go off. Thanks for your response, and hope for your continued remission/cure. That is good news. I am a few hours from the Huntsman cancer center in Salt Lake City. They are a top flight cancer center and if need be I will go there. I am very happy with my Oncologist right now, I feel he is on top of my case so I will wait and watch for now.
Thanks againAllan RomriellParticipantShannon,
Hi, I was diagnosed with MDS in July following a bone marrow biopsy in June. I went in for a physical in april and my dr informed me that my blood work showed my platelets were down to 75,000 so he set me up for an appointment with a hematologist/oncologist. At my meeting with him he told me all my blood counts were low and he couldn’t see any obvious reason for it so wanted me to have a BMB which happened a couple weeks later. I then went back to see him and was told I have MDS, a low risk form called RARS. He also said my blood count numbers were back up to mostly where they should be and we would just monitor me for the time being. I saw him a couple of days ago and numbers were pretty steady, hemoglobin was 11.8 platelets were down some to 117,000 and white blood cells were normal as they had been in july. He seemed happy with these numbers and said he would see me again in October and we will see how my numbers hold. I basically feel pretty good but can tell I don’t have the stamina I had a few months ago. Oh by the way I am a 64 yr old male. I can tell this disease is having some effect on me but grateful that for now no treatment is necessary. I would like to know how your appointment went if you feel like sharing that. I know this really blind sided me as I had no indication I had any problem. I had felt that I seemed to be a little more tired but was chalking that up to getting older, seems things get a lot harder after you turn 60. I certainly hope the best for you. -
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