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Allan Romriell
ParticipantLee,Thank you so much for sharing your story. I was diagnosed after having routine blood work during a physical last april. My blood counts were low and my doctor referred me to a hematologist who sent me for a bone marrow biopsy which confirmed MDS. I was fortunate that my doctors were on top of things and also that I have a low risk for of the disease. It was hard having to tell our children and my mother that I had a form of cancer, but I am much older than you and your husband and I at least have had time to prepare them and myself for the future. I thank you again for what you have shared. They say time heals, but I think time only helps you deal with the pain. I don’t think you ever really heal from the loss of someone so dear to you, you hopefully just learn how to live with the hurt. I don’t know how my journey will go only that it will eventually end, before I want it too I am sure. I wish you all the best in the future. take care.
AllanParticipantLyssa,
Just a comment on your husband taking more naps. That is the one thing I notice from a year ago, I don’t have the energy or stamina I had then. I tire easier and have to take more breaks while working in the yard etc. I am sure it is anemia related as that is my main issue, low hemoglobin due to low RBC and the deformed RBC. AS you say though I can deal with that and just allow extra time for every thing. I hope he and I both can just keep it at that for a long while. Take care.
AllanParticipantLyssa,
Thanks for the info, I will be interested in what you find out. I have been feeling pretty good, had a few days I felt pretty tired, but not sure if it was MDS effect or had a minor bug of some kind. It only lasted for 2 or 3 days and then I was back to normal. Been getting out doing yard work as spring has warmed things up a bit. It feels good to get out doing stuff but I am paying for it with sore body…. I go in for my next apt on the 10th so see what they say then. If the bilirubin is still up I will go and have some test done to see what is going on. My oncologist is mildly concerned about it but says he wants me to go to my regular doc to have it checked out. Only trouble is my regular doc has quit and now I need to get another one. This new medical system is kind of the pits if you ask me. At least it is out here in Idaho. Between doctors moving their hospital affiliations and insurance companies changing who is in network its hard to keep up. Well good luck to you all, I will write more when I know something. Thanks again for the input.
AllanParticipantNatalie,
I am so sorry for the loss of your father. I lost mine 13 years ago when he was 77 from cancer. I am grateful I had the chance to know him for so many years but somehow it still wasn’t enough. He had lost his father when he was young like yourself and I know it effected him the rest of his life. I hope that you can find peace as you go though the mourning process. MDS is a strange disease and I feel for every one of us that have it and for all the family involved. I wish you all the best in your life…
AllanParticipantThank you Lee, I am sorry for your loss, I can’t imagine how difficult it would be. I am doing fairly well now on a watch and wait routine and most days feel fairly normal, but I know that will not last and what the end game will be as there is no cure. I have seen 3 loved ones succumb to cancer and I imagine that is where I am headed as well. Any advise on what to plan on, any thing you learned that might be of help would be appreciated. All the best to you, thank you again for your willingness to speak of your ordeal.
AllanParticipantAll the best to you both Angela, you are right, there is never enough time for those you love.
ParticipantChris,
You just posed a question I have had myself. I was diagnosed june of 2017, been on wait and watch since then with only some tiredness and shortness of breath when exerting myself as the symptoms so far. So right now everything appears fine but as MDS is terminal I know there are worse times ahead. I just don’t know when they will start and how bad it will be. Having a good care giver, as my wife is does make a difference, and getting to go on these discussions to hear of others experience is comforting, but sometimes late at night, it gets a little scary in my head, wondering where the road is leading….. I hope all is well with you and yours, take care.ParticipantPhilip,
I agree with Sherry, get a second opinion. I was diagnosed last june with low risk MDS-RARS. My Red blood cell count and hemoglobin are similar to yours. My white count is low normal and platelets have been anywhere from 75 to 150+. My doctor has me on watch and wait and has indicated he won’t recommend any treatment until my counts drop more or hemoglobin drops below 10. Everything I have read seems to agree with my dr. He feels that as my numbers have been fairly steady for several months now I may not need treatment for 2-3 years or even longer. I would get a second opinion for sure. Good luck.ParticipantMarcy,
I am sorry you have joined us in the MDS camp but this site can be of some help in getting support and a few answers. I was diagnosed in June of 2017 with MDS-RS a mild form with the main problem of low RBC count and low hemoglobin, mostly in the 11-11.8 range. My platelets like yours were as low as 75 but have been back in low normal for several months now. I feel pretty good for the most part but am more tired than normal most of the time and have trouble with shortness of breath when I exert myself. I also have aches and pains in joints and lower back as well. I hope you get some answers from your dr as it sounds like you have not been given adequate information on your condition. This is a confusing disease as everyone is effected differently. All the best to you.
AllanParticipantAshley,
My main problem is low red blood cell count and hemoglobin. I have had low platlets at times but they have been in the normal range for several months now but hemoglobin remains around 11.4 to 11.8 range mostly with red blood cells around 3.8. This disease can have many variations and seems to be different for every patient both in symptoms and how we all respond to treatment. Hope that helps you some.
AllanParticipantLyssa,
Yes our children were a bit the same, shouldn’t they be doing something? They seem better now that we have been dealing with this now for many months and I am still going and they don’t see much change. We had a nice weekend, good weather worked out in the yard some and did some planning. We are having a family reunion this summer and all the kids and grandkids are going to be there, first time to all be together in a few years so we are looking forward to it but have a few projects to get done before july. Take care,
AllanParticipantLyssa,
That is indeed good news. I am sure not knowing the cause of the anemia is frustrating but still better than a cancer diagnosis. All the best to you both.
AllanParticipantLyssa,
Hope for good report on Thursday. Hope you all survived the storm, looked pretty fierce. We are in SW Idaho right next to the Oregon border. Its a fairly mild climate with very few really fierce storms. Nothing like the coasts or the Midwest gets. I too appreciate getting feedback from others. I share much with my wife as well as she is living it with me, as you are with your husband. So far the only people I know with this disease are those I have met online so this forum is great. Take care, good luck Thursday.
A.ParticipantI can’t decipher it all but the fact that blasts are less than 5% is a good sign, mine were low as well which is good. My marrow is hypercellular at almost 80%, my doc said that is one MDs indication. HE said normal for me should be 40-50% so that seems to be a good sign for you as well. Mine was RS which means I have an iron ring around the red blood cells, due to iron not processing right some how so that was the clear indication of MDS although a mild form. Once again my main problem is with red blood cells and hemoglobin/hematocrit, which is the main problem with MDS-RS. I hope they can give you some definite answers soon. Take care,
AlParticipantThat’s the spirit, like the Eagles song says “Take it to The Limit….. See you down the road a ways….
Al -
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