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Viewing 15 posts - 1 through 15 (of 103 total)
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  • in reply to: Just got diagnosis a few days ago #50759
    Donna
    Participant

    Mark….I am sorry that you progressed to AML. I didn’t notice there was another page for these posts and my post just above isn’t very relevant at this point. My error. I hope you will be a candidate for transplant, as it sounds like you would like very much to get back to all your sports and physical activities. I don’t know much about how you feel after the transplant, but I wish you well. Donna

    in reply to: Just got diagnosis a few days ago #50758
    Donna
    Participant

    Hi Mark……It is frightening when you first get this diagnosis, but there are different kinds of MDS and different roads and different outcomes. I was sent to the hematologist/oncologist in 2013 when my white blood count was down to 3.8. The cells have different jobs and in our case our bone marrow is making some defective cells and then they can multiple, crowding out the good cells. Briefly white blood cells help fight infection; platelets help with clotting your blood and red blood cells carry oxygen to all out organs. So you will follow WBC, RBC and platelet counts on your CBC (complete blood count). You will have occasional bone marrow biopsies which will tell the doctors where you are in the spectrum and along with other measures, you will find out if you are low, medium or high risk for developing AML (acute myeloid leukemia). I was followed about every 6 months, then in 2019 my bone marrow biopsy showed advancement of disease and I started chemo, 5 days/week every 4 weeks. I am a nurse and was by that time doing a desk job and was perfectly capable of working, but my energy was less. I started going to bed earlier and pacing myself. On my chemo weeks, I work from home. Currently I am layed off. You will adjust. When my WBC (mostly neutrophils) are very low, my MD wants me to keep social distance, like everyone is doing now. My blasts have not been above 5%, but I am not a candidate for transplant due to age. You may become a candidate, or you may not progress for many years like me. I too loved to dance which I don’t do now but I did take up the ukulele. You will be able to do some activities, maybe modified a bit. Life is not over. I just call is my “new okay”. Donna

    in reply to: DRASTIC PLATELET DROP #50093
    Donna
    Participant

    Hi Karen,
    I resumed my chemo (Dacogen 5 days in a row). My platelets were 123,000 before I started. The next week blood work, they were 103,000 (not bad). This week they were 26,000. So that is an enormous drop. I have a few new bruises. I’ll see how they are this Monday. My ANC dropped to .3, so I have to stay away from crowds, sick people, etc…..work from home when I can. Just thought I would update you.
    Donna

    in reply to: WE *HATE* MDS :-(…. #50092
    Donna
    Participant

    Hi Alan,
    What mutations do you have? I think mine head to AML also. I have ASXL1, SRFS2, RUNX1 and TET2. The SRFS2 doubled somehow. Last BMB I had 2 of them, but they are different. I don’t quite understand it.
    Donna

    in reply to: DRASTIC PLATELET DROP #49912
    Donna
    Participant

    Hi Karen…..I had low WBC, RBC and platelets. I was on watch and wait for a long time. The doctor said when my platelets went to 50,000 I could no longer take Advil, aspirin, any antiflamatories. When they went to about 20,000 we started Dacogen. I did 3 cycles and at one point my platelets went to 8000 and I had a transfusion (1 bag). After the 3rd cycle (August), the MD stopped treatment, as my neutrophils had gone to 0.2. My platelets have continued to go up since then and now are 112,000, neutrophils went up to 1. but are now at .7. WBC stayed around 1.4 throughout everything. Hemoglobin went down during treatment to 7.5 and I had RBC transfusion. They have gone up some. I am going to resume treatment with Dacogen in January. The hope is that I am starting with higher numbers so maybe I won’t bottom out and have such a hard time. So, my message is that I wouldn’t worry too much about platelets until 50,000. Mine went down slowly at first (over a year) and then started to drop thousands each month, so then I was on weekly blood work. I wish your Mother well. MDS certainly can take some twists and turns. Donna

    in reply to: UPDATE: MUTATIONS IDENTIFIED #49387
    Donna
    Participant

    Do you know what mutations he has?
    Donna

    in reply to: Polymyalgia #47506
    Donna
    Participant

    Michael….I have osteoporosis and was told to never have steroids. Do they use Lyrica for that? Are you worse in the morning? Donna

    in reply to: Polymyalgia #47501
    Donna
    Participant

    Hi Michael,
    I also have MDS MLD and have recent aches in my legs and arms, sometimes my shoulders seem involved, worse during the night and when I first get up on the morning. It is the tops of my arms and tops of my legs, above elbows and knees. I have been on daily antibiotics and my NP took me off it to see if that might have been causing the new aches. Personally, I looked it up and don’t see it as a side effect but I do see it for MDS itself or from the chemo I get….Dacogen IV 5 days in a row every 4 weeks. I have had 3 cycles so far and these symptoms seemed to start around the time of the 2nd cycle. Joint stiffness is involved but for me it doesn’t have a name yet. I had to keep adding diagnoses. I have had platelet (2) and RBC (1) transfusions. My last labs after transfusions:platelets were 14,000 (8000 before transfusion), RBC 2.81; Hemoglobin 8.7; ANC .2; WBC .9. Are you at a Center for Excellence?
    Donna

    in reply to: Wondering….dizziness #47500
    Donna
    Participant

    Malissa…..How did your husband make out? Did he have a second BMB locally? When I started, I was on watch and wait for a few years with blood work every 6 months, then 3 months, then BMB which showed pre-MDS like your husband. I started with low WBCs and then low platelets and about a year later I had a 2nd BMB which showed MDS with additional mutations and in general more advanced. I started Dacogen infusions when my platelets were in the 30s. Now I have had 3 cycles and will start 4th on Monday. My numbers continue to drop and I have had both platelets and RBC transfusions, but not many. I’m hoping for good result soon. I hope your husband gets clear diagnosis soon and a treatment plan. The worse part for me was waiting and wondering.
    Donna

    in reply to: Dacogen #47466
    Donna
    Participant

    Dale…. Yes I get the Dacogen IV 5days in a row every 4 weeks. I do not have a port. Sometimes we leave the needle in my arm for 2 or 3 days. I also get CBC every Monday.
    Donna

    in reply to: Dacogen #47445
    Donna
    Participant

    Sherry…..I have been neutropenic since before I started Dacogen. That was my first abnormal when I was referred to hematologist in 2012. I am not a candidate for transplant so I am hoping the chemo works for me. I wish you well.
    Donna

    in reply to: Dacogen #47443
    Donna
    Participant

    Hi Dale,
    Dacogen is the only other chemo used for MDS as far as I know. I don’t know why the MDs order one over the other. Maybe mutations have something to do with it. I don’t know. I have had 3 cycles so far (5 days in a row by IV infusion, then 3 weeks off) and have tolerated the treatment good. No nausea, diarrhea, etc. I have had extreme fatigue. I felt worse after this last cycle. I get weekly CBC and my counts were extremely low…WBC .8; RBC 2.57; ANC .1; platelets 8,000, so I went for my 2nd transfusion of platelets and 1st red blood cell transfusion yesterday. I feel a little better today, but not much. I guess transfusions only raise these numbers a little. I’ll be anxious to see my blood work next week. Have you needed any transfusions?
    Donna

    in reply to: Dacogen #47011
    Donna
    Participant

    Hi Carole,
    I will start my 3rd cycle this Monday, so I’m a little ahead of you and doing okay. My numbers were pretty low when I started. WBC around 1.2, platelets around 30,000, others I forget but all low. My first infusion, I had Compazine in the IV to cover any nausea. I just felt very fatigued and generally spent. I went home and took a nap right away. I never did have nausea, so the next day I decided to try it without the Compazine because I know that can make you sleepy and I was much better. So, I have Compazine pills at home if I need them along with Imodium and Colase in case of any need. However, I have not used them. My ANC has gone down to .1 and I am not allowed to be around crowds or sick people. WBC just went up to 1. Platelets had fallen to 11,000 and I had a platelet transfusion and now they are up to 21,000. I have no complaints from the treatment. I am on daily antibiotics until my WBC and ANC go up. I’m hoping by 6th cycle I see that the chemo is working. I am glad I started when I did. Why wait till counts are lower and I’m sure your doctor wouldn’t recommend it if he didn’t think it was best for you. I wish you the best. How old are you, if you don’t mind me asking. Are you a candidate for stem cell transplant in the future?
    Donna

    in reply to: CD Markers #46516
    Donna
    Participant

    Hi Debbie,
    Yes, I do have MDS and I do go to a Center of Excellence. I am a nurse so I have an interest in learning whatever I can about MDS, however, I have been away from clinical nursing for many years and frankly, never heard of MDS until Robin Roberts, a TV personality in Boston got it. She talked about it when she was diagnosed and they kind of followed her whole journey on TV. Her sister was a donor for stem cell transplant and Robin is fine now. At least she is still on TV and looks fine. I pay attention to my numbers because, in my case, numbers and mutations seem to matter. Because my platelets have been in the 40s for a few months, my last bone marrow biopsy showed some disease progression, WBC around 1.9, RBC around 3, hemoglobin stays above 10, ANC .60. Everyone has a different experience with this MDS. I think some docs go by symptoms. Mine wants to, rather than do palliative care, try to slow down the progression, so I guess I’ll be starting Dacogen soon. I go back next week but he had me sign the consent forms last visit. Maybe if my numbers are better, we will wait another 3 months. I’ll soon find out. I just get tired easier and have to pace myself a bit. I also get a lot of bruises. Well, take care. Keep us informed as to how you are doing.
    Donna

    in reply to: CD Markers #46506
    Donna
    Participant

    Debbie…Wow…I am sorry to hear you have endometrial cancer. Is that a recent diagnosis along with the MDS? So if he gave you the okay for surgery, maybe your numbers aren’t too low. When do you have surgery and when do you follow up about the MDS? Are you going to a Center for Excellence for the MDS?
    Donna

Viewing 15 posts - 1 through 15 (of 103 total)

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