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Viewing 14 posts - 1 through 14 (of 14 total)
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  • in reply to: secondary cancer due to Rivlimid #57867
    Lee Warner

    Mary, thanks for posting your experience. My husband also experiences odd pains and conditions that come and go, and he wonders if Revlimid causes these. Reading the list of Revlimid side effects, almost anything could be – or not.

    We were told it’s typical for CBC numbers to be far off when first taking Revlimid – you’re at a full year now, with white counts remaining low. So that’s a long time; I thought numbers would typically come up after several months. My husband’s WBC ranges from 2.0 to around 3.0; we’re watching ANC too, among a lot of other CBC readings, and it’s also off. He’s at just about six months on Revlimid now.

    The good news is that Revlimid very frequently works for 5q – that’s what the ocoolgist says. I hope you can work around the side effects and remain active. I guess we’re all looking for secondary cancer, always a threat. But hoping you can enjoy a good life – we are constantly reminded how fortunate we are that Revlimid is working.

    Our best to you, and everyone on this forum. I am thankful for all your posts.

    in reply to: secondary cancer due to Rivlimid #57791
    Lee Warner

    Stacy, thank you for your long post. It’s so helpful to know experiences others with 5q are having. You are so fortunate, as are all of us (my husband is the 5q patient)- to have remedies that work!

    I’ll be asking the oncologist about the relationship between Revlimid / itching / rash and antihistamines. My husband is on a regimen of L-Lysine with Claritin and Pepcid to control his Revlimid rash. It works!

    Your description of bone pain, fatigue, and other side effects are similar to my husband’s. It’s interesting to me to read your analysis of side effects and your knowledge about how to manage them. The hematologist told my husband to stop taking 81 mg aspirin because of excessive bruising and potential bleeds. At the same time I’ve read many doctors now tell the general population not to take low dose 81 mg aspirin, as it may have no positive effect for heart issues.

    Congratulations on your success controlling 5q. I hope we hear from you again. I also will post changes and information as we go along. I am so grateful for this forum!

    • This reply was modified 2 months, 3 weeks ago by Lee Warner.
    in reply to: Deletion 5Q MDS Treatment #57787
    Lee Warner

    Tom, that is great news! Revlimid does have a significantly long list of side effects. I am so happy for everyone who finds treatment that works! Aranesp is one I can ask about if a change is needed later. It was surprising to us that a 1/4 dose, 2.5 mg, of Revlimid worked just fine.

    Thanks for responding. Keep on keeping on, and hope you have a grand 2022!

    in reply to: Starting Revlimid #57546
    Lee Warner

    Congratulations, Kevin!
    This is a tricky disease- so good to hear Revlimid works for you. For my husband also – after Dx in 2018, 2.5 mg Revlimid raised his Hgb and he feels alive again!

    in reply to: Deletion 5Q MDS Treatment #57545
    Lee Warner

    Tom Nelson, your rash is coming back even at low dose 2.5 Revlimid. Can you talk with your oncologist about treating the rash in an unconventional manner? My husband’s oncologist told him to take a “cocktail” of over-the-counter meds…. 2 Pepcid pills, one Claritin pill, and one L-Lysine each day to see if the rash cleared. It did! He takes Revlimid only on Monday, Wednesday, and Friday.

    Revlimid at 10 mg caused a severe raised-welt rash nearly all over his body. At Revlimid 2.5, three days a week, and taking the “cocktail” he is rash-free. We’ve just started reducing the “cocktail” from every day to taking it only on M W and F with the Revlimid pill.

    So far just a tiny rash on the insides of his forearms, not even requiring hydrocortisone. It clears then re-appears, then clears again.

    in reply to: secondary cancer due to Rivlimid #57544
    Lee Warner

    Thank you Stacy and others for this conversation about Revlimid. My husband is age 80 with 5q deletion for the past five years, and initially had a severe reaction to Revlimid.

    He was first treated successfully with Procrit injections once each week for two years until Procrit failed, with hemoglobin dipping to 7. Revlimid was Rx’d at 10 mg with severe reaction of welts nearly all over his body, primarily legs and torso, appearing within a few days; Revlimid was terminated of course. Then he was treated with Vidaza infusions five days a week for two years until that also failed and hemoglobin again fell to 7 along with seriously out of range platelets, ANC, MCV and others. And extreme, debilitating fatigue.

    After Vidaza failed late in 2021 he had five transfusions, each was two units of RBC. Then his oncologist suggested trying Revlimid at 2.5 mg three times a week — along with a “cocktail” of Pepcid, L-Lysine, and Claritin to combat the rash. CBC levels including hemoglobin and WBC initially dropped but after 8 weeks, CBC readings improved with Hgb at 12. It’s been five months now, with Revlimid Monday, Wednesday, Friday at 2.5 mg, taking the “cocktail” with each Revlimid. Yesterday his hemoglobin was 12.7.

    He has side effects, but they’re minimal so far: occasional gut pain, purplish blood spots on the whites of his eyes, rash on his forearms; and fatigue continues- it’s less debilitating than previously. But he is alive – he enjoys family gatherings, going out to visit people, very minor physical activity such as walking a little outside, and he’s always up for driving anyone so long as he can sit in the car.

    I think when Revlimid fails, as all these remedies seem eventually to do, he can be sustained on RBC transfusions for some time. How long ? we do not know. Our understanding is that there are no remaining options.

    Bottom line on his Revlimid experience: reducing the dose mg, going with three days a week, and combatting the rash can be effective.

    If anyone here knows of treatment other than described above, posts about your experience are surely appreciated.

    in reply to: Starting Revlimid #57237
    Lee Warner

    Hello Carl. We got good news about Revlimid; perhaps this can help you if Revlimid is considered again.

    My husband has MDS 5q. Procrit failed. Then he had a severe rash reaction to Revlimid at the 10 mg dose. Two years later after Vidaza failed he was prescribed very low dose 2.5 mg Revlimid which caused a slight rash- much less severe than at 10 mg. The oncologist started him on a “cocktail” to combat the rash – and it works: 2 Pepcid tablets, one regular Claritin tablet, and one L-Lysine 500 tablet. The 2.5 mg Revlimid raised his hemoglobin to 10.2 but it took over 8 weeks with a transfusion of 2 units PRBC at week two, and another 2 units at week four.

    It’s now been six weeks since his last transfusion and his Hgb is at 10.2, up from 9.9 last week. That’s without a transfusion. Revlimid is working! The dose is only 2.5 mg, a level that the oncologist thought would not work, but would be useful to titer up to a higher dose. We have yet to learn whether the oncologist will recommend staying at low dose or increase it for more hemoglobin performance.

    He has to continue the “cocktail” of over-the-counter Pepcid/Claritin/L-Lysine but there’s nothing in that “cocktail” to count as a negative.

    You might ask your provider about this if your Hgb drops again.

    in reply to: questions about new q5 detetion diagnosis #57129
    Lee Warner

    Hello Tom,
    Revlimid rash caused my husband to stop taking the 10 mg dose. Recently his ocologist, with agreement from a Mayo hematologist, recommended 2 1/2 mg taken with a “cocktail” of Pepcid, Claritin, and L-Lysine. If that low dose can be tolerated without rash for a couple months, they will increase to 5 mg and continue the “cocktail” remedy.

    Two years ago this was not offered here as a solution; however, there has been some success with low doses and remedies to stave off the rash. What they want to avoid with Revlimid is Stevens-Johnson syndrome caused by Revlimid (which is Lenalidomide) and can start this life-threatening skin disease. Catch it soon!

    It might be worth a try at a low dose. If you’ve exhausted other treatments– Vidaza/azacitidine, Procrit/Retacrit, Aranesp, and whatever other remedies recommended by your oncologist and hematologist. I’m advised the next step after chemical failures is packed red blood cell transfusions. That comes with risk: antibody rejection, infection, and later on iron overload. Careful caretaker monitoring and diligent observation by doctors.

    This disease is troublesome, but people can live good lives for quite a long time. Each remedy gives the patient a few years or so. I hope this information helps.

    in reply to: questions about new q5 detetion diagnosis #57127
    Lee Warner

    Paula, I can share the experience my husband had, though 5q sufferers respond differently from one another and feel different as a result of their decreased hemoglobin levels. Of course other blood markers are affected, but Hgb is primary.

    His Hgb stayed around 9 for two years on Procrit/Retacrit injections once a week. After that failed, he started Revlimid 10 mg with a startling reaction of large welts all over his body, so that was discontinued. It could work very well for other people! After Revlimid, he was kept at around 9 Hgb for 20+ weekly Vidaza cycles. After Vidaza -azacitidine- failed, he is now transfusion dependent, with transfusions of 2 units packed red blood cells every two weeks. And he feels good some of the time. The oncologist is continuing Retacrit because it “helps his kidneys” whatever that means. His time between transfusions is getting shorter now, and we are troubled by the knowledge that there’s nowhere to turn.

    Throughout, even at hemoglobin readings of 10, he was extremely fatigued. That now has morphed into fatigue plus breathing difficulty, so that heart attack is more of an issue from day to day. Some people feel fine at Hgb 10, or even as low as 7. Like they say, everyone’s different, although treatment options are pretty much the same; just not in the same order.

    I’ve come to believe 5q patients can live very good lives, though fatigued, for many years. Revlimid, which did not work for us, could give more years of good life. Being fatigued is manageable. Knowing what I know now, I would have pushed doctors for more concrete information, knowing there is a definite trajectory with known limits… or at least fairly well known limits. There are probably four or five ways to manage 5q. We were able to take advantage of three of them. Perhaps there’s time for a new or different approach. I hope so.

    Blessings to you for the best possible management and outcome.

    in reply to: questions about new q5 detetion diagnosis #57126
    Lee Warner

    Just a quick response about fatigue. My husband was Dxd with 5q deletion at age 77, four years ago. At Hemoglobin 10 he was extremely fatigued. Doctors said “everyone is different” and I read here that some 5q people feel fine. Your reaction may not be unusual. Hoping for you a good outcome.

    in reply to: questions about new q5 detetion diagnosis #55008
    Lee Warner

    Ohhhh…. thanks for responding. It’s good to know about possibilities the oncologist & hematologist have not spoken about. This is for my husband’s 5q. Thank you so much.

    in reply to: questions about new q5 detetion diagnosis #54996
    Lee Warner

    Tom, can you say what injections you’re getting? My husband is on Vidaza which is failing after 22 monthly 5-day-a-month infusions. Procrit failed 22 months ago. But now they are giving him two-times-a-month Procrit/Retacrit injections again for kidney support and “possible” upside for hemoglobin.

    His hemoglobin fell from 13 in April to 8 in early September 2021. His hematocrit fell from the 27 range to 24 during that period of time; he is fatigued all the time. Literally. His chest hurts from labored breathing and gasping for breath. He is hungry all the time and gaining weight, not a good thing.

    Are you getting Procrit or Retacrit, which I believe are essentialy identical? I wonder what is the second injection you mentioned.


    • This reply was modified 9 months, 1 week ago by Lee Warner.
    in reply to: ANY advice on HEADACHES?? #54995
    Lee Warner

    Kathy, I am sorry to hear that, as it appears headaches can be a side effect of azacitidine. My husband has “low risk” MDS, 5q deletion. He’s been on Vidaza / azacitidine for 22 months after Procrit failed and Revlimid produced a severe skin reaction. He has ice pick headaches, stabbing pain in and behind his eyes and forehead. Mayo neurology finds no “reason” for these, and offers only over-the-counter pain relief, avoiding NSAIDs such as aspirin; recommending Tylenol.

    Along with intense fatigue, labored breathing, and constant tiredness, these headaches are so hard to endure. But, after consulting with Mayo, it appears to us – not Mayo – that azacitidine may be the cause, and Tylenol pain relief right now is the only remedy.

    Please do post here if you learn more about these headaches. We wish you well with your treatment.

    in reply to: Vidaza induced remission…stop Vidaza and watch? #52554
    Lee Warner

    Hello Kathie,
    We are in a similar situation. My husband’s MDS (5q deletion) was diagnosed early 2018. Procrit kept hemoglobin at mid-10s for 67 weekly injections. Revlimid caused severe rash, stopped after ten days. Vidaza, 7 days on then 21 days off. since late 2019. Hemoglobin hovers in the low 12s. He his exhausted, winded, fatigued constantly. Never has energy at all.

    The oncologist says Vidaza may keep him out of the hospital for several months or for “years”. Says he has no idea how long it can last… everyone is different he says. The oncologist has not mentioned a “vacation” from Vidaza, but we are wondering if that might be possible. Or if the 7 day/ 21 day schedule will keep him alive for several years. I don’t like the “everyone is different” answer, but he says that’s all he has, and that transfusions are the next step when Vidaza fails. He says it will fail at some point.

    We’re hoping for luspatercept or…….what? We don’t really know what to think. I see the Centers of Excellence link above and will look at it. Much hope for your husband – MDS is a difficult disease.

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