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August 19, 2021 at 10:31 am in reply to: Are MDS Patients considered “immunocompromised” for booster purposes? #54845
Raymond Bourgeois
ParticipantTam,
MDS is a blood cancer according to the National LEUKEMIA/LYMPHOMA society. From what I understand, the additional vaccine for Covid is offered to those with compromised immune systems, and all with blood cancers. I do not think your risk factor matters, even if it is low, you still have MDS. I am getting my 3rd shot today.
Hope this helps,
Raymond BourgeoisParticipantRod,
I too was vaccinated with the Moderma vaccine but due to immune system (I suspect) I tested +. For the 2 1/2 weeks before I was retested, I never exhibited any symptoms. Thank God!! RayParticipantRod,
Unfortunately, did test +. I finish my quarantine period today. Did not have any symptoms, and as of now am scheduled to be at MDA 8/25. Though I have not had any of the trial med since 7/2. still feeling well.
Keep you posted! Hope are you are doing well. Prayers with you,
RaymondParticipantI almost forgot!! When I had my 1st BM biopsy, thr pathologist hit a nerve in my leg. I had severe pain off and on for about5 mos. No one really solved the problem. I went to my family Dr. and he suggested Pregabalin(generic) for Lyrica, I took 25mg 3X a day for about 3 weeks. My pain left and not returned. I quit
taking te drug when pain subsided.
RaymondParticipantCarol,
I have pain in all of my joints most of the time. It similar to the ache you get after really working out. Though i try no to take pain medication. my Dr. prescribed Tramadol. I cant have NSAIDS either, and I can really say I miss my Aleve!! Good luck with your platelets. Hope they elevate so you can address your knee replacement.
RaymondParticipantRod
Thank you and your wife for the prayers. I had to cancel my appt at MDA due to testing + for Covid Monday.
I found out this past Sat I was exposed to someone with Covid. I am having no symptoms as of now(10 days)
and due to compromised immune system from MDS, will be receiving an antibody infusion to provide more defense.
Have rescheduled for August, but will need to test negative before returning to MDA. I hope you are doing well Rod, and again thank you both for the prayers. Know that you both are in my prayers also.
RaymondParticipantGerry, I go to Anytime Fitness. There are several locations near me. I dont have the discipline to do it at home by myself. I would always find something else to do.
RaymondParticipantKenan,I am 66 and was diagnosed with MDS at 65. Iwent for a while not having the energy or desire to do anything. I finally decided I was spending money on a health club so I was going to use it. I go 3-5 X a week, walk, ride bike and do some weights. I really feel that it is a big help both physically and mentally. I can’t lift the weights I use to, but I still feel its something I need to do.
Raymond BourgeoisParticipantRod. that is the attitude we all need to keep. Whether it is MDS or some other condition, sometimes we forget
it can always be worse. Take care and God Bless.
RaymondParticipantRod, no my Dr. mentioned nothing about Vidaza. I have a Hematologist in Lafayette, La. who was the first I aw and ordered the BM biopsy. With her, I had blood transfusions and Procrit and Neupogen. WE talked about MDAnderson and suggested if given the opportunity to participate in a trial to do so. I go back for the next cycle 7/28. With the Lord and a prayer to St. Peregrine, looking forward to it!!
RaymondParticipantRod, thanks for responding. The trial I am on is decitibine en capsulated with another med. I take 1 pill a day for 3 days. After 4 weeks, blooodwork drawn and if all is well, as has been the case, I will repeat after 4 wks.
trial started 2/26/21. I will be starting 5th trial at end of this month. Hopes are to promote growth of whites
and reds in bone marrow. So far so good. I only have aches in my joints and occasional tiredness. If things continue aa they are going, stem cell will not be an option.
Regards, RaymondParticipantI was diagnosed 10/05/20. Just found out about this site, what a relief. finally can get info regarding my condition. I used to play tennis, no longer can run. I am 66 and do walk, ride bike, and work out with weights.
I no longer can lift heavy weights, but do many reps with low weights. My Hgb is11.5, WBC 2.8. On a clinical trial at MDAnderson in Houston. Have not had transfusion since March 30.Bones Joints do ace quite a bit, but not unbearable. Not sure if exercise affects Hgb, but I kind of go with how my body feels. If it hurts too much, I stop.
Thanks for letting me have this chance to share!
Raymond Bourgeois -
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