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Viewing 15 posts - 1 through 15 (of 43 total)
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  • in reply to: secondary cancer due to Rivlimid #57789
    stacey
    Participant

    Lee – I am so glad your husband’s smart oncologist has figured out a combination of medicines to take with the Revlimid that helped with his severe rash. That’s very good news that his Hemoglobin is now at 12.7.

    Paula- Thank you for the kind congratulations regarding my children. Not a single day goes by that I don’t thank God for them.

    Take care and best of luck,
    -Stacey

    in reply to: secondary cancer due to Rivlimid #57519
    stacey
    Participant

    Hi Mary and Paula! Mary – sorry for the delay in getting back to you and saying hello.

    I started taking Revlimid in 2004 when it was a not yet approved clinical trial drug, and I was given it for Compassionate use due to my age (33). Therefore, at that time, and until it was approved, I received it at no cost. I initially started at 10 mg in 2004, but it was lowered to 5 mg after about 6-8 weeks when my red blood cell count and Hemoglobin improved. I take the dosage every day with no days off. Every year since 2004 I have been on the 5 mg dose except when I went off of it to have children (mid 2006 to about 2010), then I resumed the Revlimid because my hemoglobin had fallen while off the medicine. Again, it took between 6-8 weeks for it to start working for me and showing a hemoglobin improvement.

    SIDE EFFECTS:
    When first starting Revlimid: Very itchy scalp (assuming due to old cell turnover), very few small patches of dry skin on arms and legs and dry skin on face, fatigue, constipation & stomach pain, Lower White Blood Cell count & neutrophil count (those continue to be at least slightly suppressed even after hemoglobin count improves), lower red blood cell count (until hemoglobin count improves), possible skin sensitivity to sunlight.
    The Last few years: Same symptoms as above but ALSO occasional leg cramps at night, diarrhea alternating with constipation.

    TRANSFUSIONS: I’ve had a total of 8 units of blood. 3 units when I was first diagnosed or just starting Revlimid; I believe the next 2 units were while taking Revlimid when my counts were only going down (in that 6-8 week window) before going up; The last 3 were when I had just given birth to my twins (not on Revlimid then).

    COST: It was free to me initially. Now, I have Aetna Medical with CVS prescription insurance through my husband’s work (I don’t work anymore) with a several thousand dollar deductible. Bristol Myers/Celgene has a co-pay assistance program, which I sign up for every year. For me, it helps to delay the yearly deductible payment for a few months, because my insurance applies it until it runs out but then I still have to pay my deductible afterward. Other insurance plans may handle that differently. I know the Leukemia and Lymphoma Society also offers MDS copay assistance but based, I believe, on an income threshold. I think there is at least one other program out there that offers co-pay assistance for MDS patients.

    FYI: Over the years, I thought there were at least 2 people on this board who have had an allergic reaction to Revlimid for some reason and had to discontinue treatment, but I have never had this issue.

    Any other questions, please don’t hesitate to ask me, I’m happy to answer any.
    I hope all goes very well for both of you.
    -Stacey

    in reply to: Blood transfusions #57518
    stacey
    Participant

    Kati,
    My information is a bit outdated, sorry, but here is what happened when I got directed donations in 2004. At the time, I was about 34 and newly diagnosed with 5q- MDS, and my hemoglobin had dropped to a 5.9. I remember I felt so tired I didn’t want to get off the couch. Initially I was hesitant to take blood from anonymous donors at the bank, so I had people I knew donate. I received 3 units at the time. Here’s what I remember:
    1 – First, I called my local Red Cross to ask questions and get info on how directed donations worked. They took down all my personal information. I don’t think that I needed to give them my donors’ names at that time.
    2- Next, my potential donors went in to their local Red Cross to donate and told them the blood was specifically for me. None of them lived in my city. Several were across state and one was out of state, and the whole process still worked smoothly.
    3- The donors were asked a list of questions before donation, and at that time, 2 of my donors were rejected. My mom was rejected, because she had recently had an eye problem, and a friend of my mom’s daughter was rejected due to anemia. In addition, the doctor said beforehand that my husband should not donate to me since we didn’t have kids yet. So I ended up needing more people lined up than expected.
    4 – The blood was all tested, collected, shipped, and I showed up at my local oncologist’s office and got the blood with no issues whatsoever.
    5 – Later, my donors mentioned they got quite a few calls at home afterward from the Red Cross asking for more blood donations, but they let them know they were saving the blood for me in case I needed future donations.

    My blood type is A+, and I received two units of A+ and 1 unit of A-. Note that I could take from a negative RH factor because I was positive, however, a negative RH factor can’t take blood from a positive RH factor because of the antibodies.
    By the way, after I got those 3 units, I was so impressed by the screening and testing done by the Red Cross that I had no worries about getting any future units without directed donation. But in a time like this with the blood shortages, I can see why you’re thinking about directed donations. Best wishes to you both.

    -Stacey

    in reply to: Covid/Omicron Infection with MDS #57276
    stacey
    Participant

    Just another opinion for you. I am aged 51, have had 5q- for almost 20 years, I decided to not get any Covid shots, nor did I get Covid at all. My oncologist never advised or encouraged me to get the shots. I also have never had the annual flu shots, and I don’t remember having had the flu since the stomach flu roughly 8 years ago. I am a bit of a homebody in wintertime, have always used hand sanitizer faithfully after leaving a store and then washed my hands as soon as I got home; this was my typical practice LONG before Covid. Since Covid started, I have traveled out of state a couple times, have stayed at a hotel, a condo, rode elevators with strangers, swam in pools and lakes, been at a busy rest stop, been to the movies once, and went out to eat at restaurants maybe 10 times. No one in my family has had Covid, and I haven’t even had a cold since before Covid hit in 2020. I also know of several families where a few members of the family had Covid and the other family members in the same household never even got Covid. Since getting MDS, my general rule of thumb is to be more of a homebody in winter, with online shopping instead of crowded stores, keeping to immediate or smaller family gatherings on holidays. Then I try to take advantage as much as possible to get the fresh air and vitamin D sunshine boost in spring and summer; it is good for the immune system. I tend to spend more time seeing extended relatives in those late spring, summer, and early fall months when there are less germs and double check no one is unwell before visiting. So far, this has worked out for me. Good luck.

    in reply to: secondary cancer due to Rivlimid #56773
    stacey
    Participant

    Hi Luke,
    I have MDS 5q- and have been on Revlimid, mostly 5 mg, since 2004. Since then, I have had papillary thyroid cancer (approx. around 2011) and had one mole removed awhile ago from my back which I think was basal type. Sorry to hear about your secondary cancers as well. I am thankful that Revlimid has worked really well for my blood levels over all these years, but it was not without a few negatives (like stomach pain as well). Best wishes to you.
    -Stacey

    in reply to: questions about new q5 detetion diagnosis #55019
    stacey
    Participant

    Mary,

    My hemoglobin tends to trickly down slowly for my 5q- MDS. Also, as my hemoglobin drops, my MCV (size of the cell) slowly goes up (further above 100), indicating the cells are getting larger and more abnormal.
    I don’t really understand the tiredness. When I was a 5.9 many, many years ago, I didn’t want to get off the couch. That was a real low point with very low hemoglobin right before I got transfusions. However, I have more recent days where my hemoglobin is more normal, yet I just feel tired, like I don’t want to do ANYTHING and can’t wait until bedtime. Other days I have a little more energy and can get things done around the house. It’s a very confusing disease, but I personally think your 10.2 level could be causing your tiredness, because your heart is working harder to circulate the oxygen.

    in reply to: COVID MDS #54228
    stacey
    Participant

    Donna,
    Thank you so much for taking the time to post. I hope you feel better very soon.
    -Stacey

    in reply to: COVID MDS #54064
    stacey
    Participant

    Kathy,
    Thank you so much for your response. I wish you & your husband the very best.
    -Stacey

    in reply to: COVID MDS #54049
    stacey
    Participant

    Bob,
    Thank you for the info about compromised immune systems and for the interesting article.
    Best wishes,
    -Stacey

    in reply to: COVID MDS #54047
    stacey
    Participant

    Thank you Jimmy for sharing your personal experience, it is very much appreciated. It was especially helpful to know how you reacted to the 2nd dose because you are also on the same medication as I am.
    Bob – fyi – I actually did talk to one of my MDS doctors about the vaccine about a month ago. I am unsure about getting it, but I wanted to know what she thought. She said I could get it if I want, and if I decide to get it, she wouldn’t expect the vaccine to necessarily have as high an effectivity as stated. My understanding is she meant it was because they probably didn’t use any volunteers with our immune disorders for the vaccine trials. She had not yet gotten a COVID vaccine herself, as it was not mandatory for her to do so, and she was undecided as to whether or not to get one as well. So she gave me her thoughts, while at the same time trying to balance not influencing my decision either way.

    in reply to: COVID MDS #54029
    stacey
    Participant

    Kathy Brown,

    You mentioned you and your husband (who has high grade MDS) got your first Moderna shot around mid-January. Can you let us know when you both got the second dose and what the side effects were from the second shot for you both?

    Thanks & take care,
    -Stacey (5q- MDS, diagnosed 2004, 5mg Revlimid daily)

    in reply to: COVID VACCINE #54028
    stacey
    Participant

    Kathy,

    A few days after you and your husband get the 2nd Moderna vaccine shot, can you then post what your side effects were from that second dose? Just like Kevin, I’m very interested in hearing about it too.

    Thanks & best wishes,
    -Stacey

    in reply to: Wife New Diagnosis 45yo #53838
    stacey
    Participant

    Hi Tom,
    I take the 5 mg Revlimid capsule daily with no days off. The original dose in 2004 was 10 mg, but they lowered that the same year once my counts improved, and I’ve been on that same dose ever since.
    -Stacey

    in reply to: Wife New Diagnosis 45yo #53836
    stacey
    Participant

    Hi,
    I was diagnosed with MDS (5q- subtype) at age 34 in 2004 and am now 50.
    One of the first things they did with my initial abnormal CBC was make sure it wasn’t a B12 issue. Did they check your wife’s B12 level? I assume they did, but you didn’t mention it, so I wanted to be sure.
    For me, they knew it wasn’t an iron issue, so I was given a Bone Marrow Biopsy. They then tested my only brother very early on to see if he was a potential match, even before I considered whether or not to do a bone marrow transplant. They didn’t waste any time discussing options right away such as trying a clinical trial drug at the time (Revlimid, the option I chose, and still take today, because it works best for my subtype), OR a bone marrow transplant. The doctor mentioned in that conversation that if I decided on a transplant, I would need to freeze my eggs in order to have children. It was a lot to take in at a young age, and I’d imagine that’s how your wife feels. I never was sure how I even got the bone marrow disorder in the first place.
    In the 16 years since diagnosis, they periodically do a comprehensive metabolic panel lab, and I’ve never had a single kidney issue and always have a normal creatnine and eGFR level. I can’t speak for certain as to whether others with MDS have had kidney issues, so I hope they respond to you in this forum if they have. What the cardiac physician mentioned about the multiple heart caths leading to the kidney issues could very well be the cause.
    I’ve only had 1 or 2 Procrit shots, in the year I was first diagnosed and before my Revlimid medicine started working. They may have just switched to Retacrit due to things like shipping issues or cost. Unless Retacrit has less potential heart side effects…? I never received a Retacrit shot, so I don’t actually know anything about it. You might want to ask the next time they give her one so you know.
    Please tell your wife I am thinking of her and send her my very best wishes.
    Take care,
    -Stacey

    in reply to: asymptomatic mds #53285
    stacey
    Participant

    Very happy for the 3 of you who are symptom free and are doing so well! That’s terrific news!
    Take care,
    -Stacey

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