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Allan Romriell
ParticipantDavid, I was 64 a year ago when diagnosed. I told my adult children(letting them decide on their own children) my mother and siblings and a few close friends but that was it. People at work and other friends and people I see occasionally have no idea, as I don’t look or act sick. I told those close to me that the odds are I would live quite a few years with my RARS low risk. The mean survival seems to be around 8 years and the progress so far has been very slow and my oncologist thinks I could go 3 or more years without treatment. It is a personal thing and everyone will react differently. I thought my kids and close family and friends should know, because it would effect them at some time. Just my 2 cents, all the best to you.
ParticipantBeth, Has your doctor suggested moving you to Dacogen or Vidaza? or are you just wondering what if? Everything I have read suggests putting off those treatments unless needed as they don’t seem to help long term unless really needed. I am of course interested in your treatments and progress because we have the same MDS version and you were diagnosed about a year before me. All the best, hope all is well.
A.ParticipantLyssa, Good luck with it all. My only liver issue is bilirubin at 1.6. My hemoglobin was 11.4 with white cells right on low normal and platelets 137. My marrow is 80% hypercellular blast count 1% with greater than 15% ringed sideroblasts, which gives me the RARS diagnosis. I am about the same as a year ago(except bilirubin higher and platelets higher as well) so oncologist pretty happy with the stability which of course makes me happy. I am even feeling a little more energy, I think its the spring weather and getting out in the yard more. I still tire more than a year ago but feeling a more lively than I did all winter. All the best to you both.
A.ParticipantGopalan,
That is a good question, my guess is from initial diagnosis. Median of course means average, which some of us are under that and some over to get the average. You are already at the median average on some scales so you are obviously going to exceed the mean average by quite a bit. I also have RARS so I hope I can stay if not symptom free, because I already have some minor symptoms but treatment free for 8 years, that would be great. I was diagnosed about a year ago at age 64, so even going the 3-5 years treatment free that my oncologist thinks I might make would be a blessing. I hope all goes well for you from here on, keep us posted and good luck.
AllanApril 30, 2018 at 9:48 am in reply to: Low risk MDS patients who opt for no medical/drug treatments #36373ParticipantDiagnosed MDS-RARS from BMB june of 2017(64 yr old at that time). I had blood work done in april 2017 for a physical. Platelets were 75, hemoglobin 11 white and red counts slightly low. I have been on watch and wait since then. My numbers have fluctuated some up and down and on the 10th of this month platelets were 137 hemoglobin 11.4 white count at the low end of normal reds were 3.87 so overall about the same as a year ago with platelets up to a better range. My oncologist feel I could go as long as 5 years before needing treatment, but I know it can change on a dime as well. I will continue to wait and watch and hope for the best.
ParticipantI guess that is a question we should all ask our Doctors to see what they say. I can see without proper functioning red blood cells you can’t get enough oxygen, just wondering if the supply is increased if it would help the available cells work at maximum efficiency.
ParticipantBeth,
Yes I have read some of the past forum notes. They have been helpful. Thanks for thinking of me, appreciate your kindness. Take care.ParticipantDiana,
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.ParticipantBeth, I am in Idaho so won’t be there but would be interested in what you learn there. I hope to make one someday but the closest I have found so far is 400 miles away.
Take care,
AllanParticipantMarie,
Thanks for your reply and the link, I will check it out. I have talked to a few patients of MDS whose bilirubin count is high, so makes me think it is probably connected. My oncologist assures me my liver and kidney function are good but is slightly concerned about the bilirubin. I have been drinking a lot of water with lemon oil extract as it is supposed to help detox your liver. My bili count was 1.5 in oct 1.6 in jan but is holding at 1.6 as of last week. I started the lemon in jan so maybe it helped? time will tell I guess. My version of MDS very much effects RBC’s and causes a defect called ringed sideroblasts which is an iron ring around the outer layer of the RBC so it is not as effective as it should be. So I have fewer RBC and some of those are defective, so lower hemoglobin etc etc. Good luck with your appointment, I hope they have some answers for you both. Thanks again for the info, all the best.ParticipantThat is great news Cecile, so happy for you. Hope it continues to work for many years to come.
ParticipantMarie,
I am 65 and was diagnosed with MDS_RS june of 2017. My platelets were at 75 last april which alerted my dr to possible problem. He sent me to hematologist who ordered a bone marrow biopsy that confirmed MDS. MY rbc count is low, hemoglobin low and hematocrit low, platelets have bounce around from the 75 low to 150 and are now at 133. My bilirubin has crept up and is now 1.6 although it has held there for over 3 months now. I hope you get some answers at your appt. Good luck.ParticipantLyssa,
Being tired most of the time seems to be my norm now, even though I am not in need of any treatment. I used to be able to work pretty long hours doing yardwork etc. Now I need frequent rest breaks and at times I just don’t feel like doing much but sitting down watching tv or whatever. Although my counts are pretty much the same as a year ago, my energy level and stamina have taken a pretty good hit. I assume it is just the accumulation of time with the anemia that is doing it? Hope all is well for you both, take care.
AllanParticipantKimberly,
So sorry to hear of your father. I am 65 have had a mild form of MDS, RARS since last year about this time. I have experienced back pain but nothing like you are describing. I have read of others having back and other joint or bone pain in various degrees but your fathers sounds worse than any I have heard described. This disease seems to be all over the place however in severity of symtoms, I hope they can find him some relief. Prayers for you both.ParticipantAppointment yesterday, bilirubin holding steady at 1.6. Other counts pretty good as well, all about the same or slightly lower. I am pretty much where I was with counts last summer, so dr is happy and we will go back in july to see where we are then. Hope everyone else is doing ok, god bless you all in your struggle.
Allan -
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