Two questions – about low risk MDS

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• February 20, 2018 at 10:57 pm #35824
  Clint Holland

  Participant

  This is my first posting. Hello to those who read this. My 1st question is this. Is there a general approach/treatment that is taken(or is generally adopted) when MDS is first detected in a 69 year old male (me).

  And my second question relates to the Drug called Lenalidomide. Is this the current drug of choice (again generally speaking, not patient specific) or is there some newer drug available. Assuming of course any treatment is recommend at all for low risk MDS, as I am informed that often this is the route taken i.e. wait and see if it develops beyond low risk. I hope those who are in the same boat as me who had early low risk MDS diagnosed can shed some light my way in answer to both questions. Many thanks in advance to those who respond.

  February 21, 2018 at 8:52 am #35829
  Anonymous

  Inactive

  Don’t think there is one drug fits all for us. Every doctor seems to have their favorite. Wait and see seems to be the catch phrase. Watch what the drug does in your body is the next phrase.
  My doc has put me on Arnasep injections and has increase the dosage once. Now, we will see…
  Good luck. mkt

  February 21, 2018 at 9:00 am #35830
  Clint Holland

  Participant

  And the very best to you on your own treatment.

  February 21, 2018 at 9:36 am #35831
  tam

  Participant

  Gerry,
  I was diagnosed as low risk at age 59 about 4 1/2 years ago. I’ve been in wait and see since then and have no symptoms that I know of. When I learned of my disease I committed to stay as healthy as possible through diet and exercise. While I do have aches and pains I’m not sure if its from aging, exercise, or MDS. I go to a Center of Excellence medical college twice per year for blood tests. After diagnosis I was checked monthly then quarterly until doctor was confident that my counts were stable. No mention of drug treatment has come up at this point. My platelets, wbc, and rbc are all just below normal level, but are stable. Good luck.
  Tom

  February 21, 2018 at 10:01 am #35833
  Allan Romriell

  Participant

  Gerry,
  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.
  Allan

  February 21, 2018 at 4:40 pm #35836
  Clint Holland

  Participant

  Tam, thanks for that information. Gerry

  February 22, 2018 at 11:15 am #35838
  Chris Ballmer

  Participant

  I’m in a similar holding pattern. Initial diagnosis multiple low blood/platelet counts… then MDS through bone marrow biopsy. I’m 50 years old. My doc has OKed a prescription of both Procrit and Vidaza for boosting blood cell counts… but I am holding off until symptoms increase.

  February 22, 2018 at 12:04 pm #35839
  Allan Romriell

  Participant

  Chris,
  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.
  Allan

  February 26, 2018 at 6:08 pm #35864
  Chris Ballmer

  Participant

  Thanks Allan.

  Hey just to ask, have you come across any benefit from using O2, for anemia, to help alleviate the suffocation effect. I am trying to figure out if buying a pilots oxygen tank and using it when I feel faint will help… or is it something to do with inability of red blood cells to use ANY amount of oxygen in the air? maybe I’ll post it here as a topic…

  Carpe diem.

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