[Robin Smith]

From what I’ve read it does get better. Maybe talk to your doctor about dosage.. sometimes changes can be made that helps with the side effects. Good for you that it’s working for you.. it doesn’t for everyone.

[Robin Smith]

Nancy, I had two compression fractures before I was diagnosed with MDS. Have you had a bone density test yet? If not, you may want to talk to your doctor about having one done. My understanding is that compression fractures have more to do with thinning bones, which is fairly common for women as we age, than MDS. Sorry if you’re dealing with compression fractures.. they’re certainly no fun. I had kyphoplasty surgery twice, which in my experience, was “miracle” surgery. It wasn’t painful and I walked out of the clinic feeling like I had my life back again.

[Robin Smith]

Jean, that is such good news!! And truly uplifting to read.. ty so much for sharing!

Bexar, I’m thinking “adapting” is the key word for all of us here. Keep on keeping on enjoying life.. have a wonderful time in Vegas! Wishing you lots of good luck with all of it. Including Vegas 🙂

[Robin Smith]

Carol, I’m so sorry my message ended up in your thread! Clearly I need another coffee this morning. I’ve attempted to edit/delete but so far no luck.

[Robin Smith]

Looking for hematologist recommendations in the Richmond, Virginia metro area. Any help would be greatly appreciated. Sending all good thoughts and prayers for all. Take good care..

[Robin Smith]

Had not heard of this. Thank you so much for sharing!!

Fantastic news Jimmy!! Thanking you as well for sharing this wonderful news!

[Robin Smith]

Hi Terry. I’ve been on weekly Procrit injections (30 units) for almost three years. Retacrit is a bio-similar of Procrit so the two medications are somewhat different, but I suspect close enough that they’d have fairly similar side effects. Just to let you know.. I’ve experienced high resting heart rate and shortness of breath off and on even when my hemoglobin is in the high 9’s. I also have degenerative disk disease so between the MDS, back problems, and the Procrit it’s been extremely challenging to sort out what is causing what! Take good care.. sending best wishes.

[Robin Smith]

Joe, my doctor at UVA told me we would discontinue the Procrit and begin Luspatercept once my hemoglobin dropped to 8. I believe I began the Procrit while hemoglobin was in the mid eights. I’ve searched my records but can’t find it so far, but I’ll keep trying and let you know. Do you know which type of treatment your doctor has in mind? I’ve done very well with Procrit for almost three years, however it is losing some of it’s effectiveness at this point.

[Robin Smith]

Sending best wishes and lots of prayers to you and your husband. Good luck! Blessings, Robin

[Robin Smith]

Thank you so much for your input Michael. I’m going on close to three years with the Procrit injections and my hemoglobin numbers have been gradually trending down for the past couple of months so I was almost hoping the prednisone was bringing it down. But clearly that’s not the case. I have been increasing water intake in an effort to avoid a UTI infection and did find some information saying that increased hydration can bring hemoglobin down 10 to 15%. Hanging my hat on that for now and trying not to focus on the 8.6 number, but the trend which while trending down has been fairly consistent in the 9s. So far my WBC and neutrophils have been in the normal range (ha! did we ever in our lives imagine how wonderful the word “normal” would sound now!), but I have recently developed giant platelets and now have bruising that is a new development for me. Take good care Michael.. sending all good thoughts, good vibes, and prayers your way. And again, thank you for responding. Best, Robin

[Robin Smith]

Kenan, thank you so much for sharing your good news and I’m so happy for you that Luspatercept is not only working, but working so well for you! I was given your same diagnosis at UVA in 2019 and am currently on weekly Procrit injections that’s still working for me, however not quite as effective as when I first began the injections. Numbers are trending 8.9 to 9.3, at this time. My doctor at UVA, Dr. El Chaer, has told me my next step will also be Luspatercept. Such good news you’re experiencing a strong response. Again, thank you for posting.. Robin

[Robin Smith]

Debbie, did you eventually find answers regarding your platelets and blood counts? I’ve had “large” platelets for a while and now my last CBC revealed “giant” platelets. Both my WBC and platelet count (175K/uL) are within the normal range so I’m confused over the change from large to giant and definitely confused as to the significance of that change. Last week I was given my normal Procrit injection of 30 units at the same time I received Evusheld so I’m not sure if this change could be related to that. I did have the worst week of side effects I’ve ever experienced and, of course, spent the entire week contributing it to Procrit completely forgetting that I also got two injections of Evusheld at the same time. In any case, like you I’m sitting here wondering if the change in platelets is a signal of disease progression. Or if the platelet change could be related to the Procrit and/or the Procrit/Evusheld combination. The only thing I’m fairly confident in knowing right now is that giant platelets are, in fact, associated with MDS. Fortunately, I have an appointment scheduled with my oncologist in a couple of weeks and will, hopefully, be able to find some answers. Sincerely hoping you’re much less panicked at this point and doing well. Take good care..

[Robin Smith]

Carolyn, if you take a multivitamin make sure it doesn’t have iron. Too, remember all white flour and most boxed cereals are fortified with iron. I brought my ferritin down by adjusting my diet so I’m posting a link I used that helped me. Take good care..

https://www.healthline.com/health/hemochromatosis-diet#keep-in-mind

[Robin Smith]

https://www.mds-foundation.org/forums/search/procrit+side+effects/

Linda, Lee Warner describes her husband’s experience with Revlimid in this thread. I’m hoping you find it helpful.

I have no experience with Revlimid. I’m currently struggling with side effects due to Procrit (2 1/2 yrs duration and side effects seem to be increasing in severity while my hemoglobin appears to be trending downward). The above thread about Revlimid popped up in my search. Sending my very best wishes to your husband as he makes this difficult decision. Remember to take care of you too. This is hard.

[Robin Smith]

Jack, just wanted to take a minute and thank you for your posts. Encouragement from any corner, including doctors, is so hard to come by with this diagnosis, but I always, always feel better and encouraged after reading your comments. Keep fighting Jack!.. you are a true inspiration. And again thank you.. so often we throw comments into the void and have no idea the positive impact we may have on others. I want you to know.

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