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Viewing 15 posts - 1 through 15 (of 109 total)
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  • in reply to: Dentist #57520
    Donna
    Participant

    I have MDS Intermediate risk with neutropenia and very low platelet count. I take Levofloxicin (antibiotic) before dental appointments. I just asked about getting a crown and my MD told me that there would be no problem. It is not really invasive and no bleeding. I would still take the antibiotic prior to procedure. Donna

    in reply to: COVID MDS #54225
    Donna
    Participant

    Hi Stacey,
    My husband and I both had our second Moderna shots yesterday. He is 81 and does not have MDS. Absolutely no side effects. He went about his business as usual, said his arm is a little sore. I have MD…shot stung more than the first (no big deal). I got it at 12:30 yesterday and I was find until about 1:30 today when I started having chills. I had a low grade fever (99.3). I took Tylenol and was find until about 5:30 when I started having bigger chills. Temp was 101.6. Took Tylenol again and here I am on the computer. I’ll have to see what tomorrow brings. My arm is improving as the day goes on. I have no other symptoms except the fever. I don’t like it going to 101 because I don’t consider that low-grade. Oh well. Certainly beats getting COVID.
    Donna

    in reply to: Start treatment when no symptoms? #54224
    Donna
    Participant

    I treat at a Center of Excellence. I didn’t have any symptoms but my counts were dropping since 2013. I had BMB and dx. of MDS in 2018. I have 4 mutations and MD thought I should start treating when my platelets were at 10,000. I did 3 cycles of Dacogen, 5 days/week, once a month. My counts went very low, ANC down to 0, Hemoglobin went to 7…all low. I ran fevers and had sores in my mouth, not a great scenario. I had blood and platelets when necessary. I didn’t treat for about 6 months and very gradually my numbers came up a bit, except WBC and ANC. They stay low. Tried again in Jan. of 2020 and plan was every 3 months to see if my body could tolerate it better. Then COVID came and I have not treated again. He didn’t want to run my WBC down lower and lead to infection. I have been on watch and wait since then with monthly blood work. My platelets came up and my MD contributes it to the chemo. They hover around 118. RBD/Hemoglobin/hematocrit have all come up. Hemoglobin stays around 10 to 11. WBC is 1.2 and ANC is .5. So chemo helped my platelets and caused my RBDs to go down. Eventually I will treat again I guess, but for now, I am okay. I have never had any of those other meds that people talk about. I am thankful to have some energy back. I wish you well. Donna

    in reply to: Anyone else with CCUS? #52874
    Donna
    Participant

    Hi Erin…….I wrote about it in the RUNX1 category on the previous page. Donna

    in reply to: Runx1 #52872
    Donna
    Participant

    Hi Anne….I would think your doctor will want to check out both the 25 lb weight loss and the spotting after menopause. I hope all is well. As far as the RUNX1, I have that mutation too along with ASXL1, TET2 and SRFS2. In fact, RUNX1 added another one in my last biopsy. Same mutation but with different numbers after it. Now they call it RUNX1 X2. I started with CCUS about 4 years ago. My PCP sent me to a hematologist when my WBC went to 3.8. Since then it has been a gradual decrease. Eventually my RBC and platelets were involved. My first bone marrow biopsy said probably evolving into MDS and they put me in the CCUS category. A year letter my biopsy confirmed MDS. I eventually started Dacogen infusions 5 days/month, had 3 cycles and my numbers dropped so low, we stopped. Then we waited 5 months and tried again, this time it was to be every 3 months instead of monthly to see if I could tolerate it better, had 1 round then COVID hit. I am only having blood work monthly now. Chemo helped my platelets but did nothing for my WBC (runs around 1.2 and neutrophils at .4 now) and made my anemia worse and I needed several blood transfusions, which I didn’t need before treatment. So I guess I’m kind of watch and wait again. My MD said when platelets drop, we’ll maybe try 2 or 3 days/week instead of 5 or try the new oral Dacogen. I don’t have living family members to check the RUNX1 but I did have a first cousin pass away from AML but I couldn’t get his records. My doctor would have liked to see them to see if there was a familial link. Well, best of luck to you.
    Donna

    • This reply was modified 1 year, 10 months ago by Donna.
    in reply to: Last days #52871
    Donna
    Participant

    Pat….What state do you live in?

    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

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