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Viewing 15 posts - 1 through 15 (of 22 total)
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  • in reply to: clinics in Texas #58526
    Tom Nelson
    Participant

    Admin needs to watch out for these spam injectors. May signal a leak in security. I am stopping my sign ins.

    in reply to: Aranesp (darbepoetin alfa) #58525
    Tom Nelson
    Participant

    Sorry, meant transfusions. Packed Red Blood cells PRBC. T

    in reply to: Aranesp (darbepoetin alfa) #58510
    Tom Nelson
    Participant

    From what I have heard and seen here, there are many pros and cons of the various treatments for MDS. Some work for some and some work for none. I am a del5q patient. I have been on Aranesp for 3 years. A shot every 2 weeks. As far as I am aware, I have had no adverse effects nor reactions from the Aranesp. Have received Revlimid and have had PRBC transplants over the past year, so it is hard to say if either of the 3 treatments have had any cause or effect on increasing the RBC count.

    in reply to: clinics in Texas #58461
    Tom Nelson
    Participant

    Assume the response is spam. May be a virus. I won’t open It.

    in reply to: 52 years old MDS q5 deletion Anemia and RA #58174
    Tom Nelson
    Participant

    78 years old. Going on 5+ years after being Del5q diagnosed when the HGB was at 10.5. Have been on Aranasp for 4 years. Presently receiving some PRBC units due to HGB drop below 7.0 Was back up to high 8.s after 5 months of Revlimid. Had to stop Revlimid due to rash and other issues. Revlimid is the best medication for Del5q but has problematic side effects for many people. Have had to cut back on many homeowner’s chores due to fatigue. Am my wife’s primary caregiver. Will probably need more assistance and senior living as time goes by.

    in reply to: Deletion 5Q MDS Treatment #57783
    Tom Nelson
    Participant

    Did stop the Revlimid after 4 months. Rash was becoming a problem. Had 4 transfusions due to low HGB. Next step was going to be trying the “cocktail” if the rash was tolerable. Had a hospitalization of CHF caused by lots of added on fluids. Could not determine if Revlimid was a partial cause. Now back to Aranesp every 2 weeks. HGB seems to be rising on its own. Maybe the Revlimid kick started the stem cells. Will wait and see. Feeling great with drop in fluid retention.

    in reply to: questions about new q5 detetion diagnosis #57130
    Tom Nelson
    Participant

    Thanx Lee. I am coming up to 3 months on the 2.5 mg of Revlimid. Tried 5 mg 4 years ago, but rash stopped the program after 2 months. Hgb down under 8, so we are retrying the low dose Revlimid. Rash started after 2 months. Am tolerating but bothersome. If Hgb starts rising, would like to stay on the Revlimid, maybe every other day. Of course, it also depends on the ability to obtain a copay grant. Did have a HGB below 7. and had a unit of PRBC, which brought energy level back up. Will have draw on Thursday, Aranesp shot on Friday and Dr. visit next week. Fingers crossed. Wil mention the cocktail.
    T

    in reply to: Aranesp #57084
    Tom Nelson
    Participant

    Been on Aranesp for 3+ years started at Hgb under 10. 3 months ago, Hgb is down to 8. Every other week on Aranesp injection. Still taking along with 2 months of Revlimid. Waiting for kick start on the Revlimid. Aranesp will not make you less tired. Aranesp is to boost red blood cell production which may make you less tired. My del5q still makes red blood cells, but most are becoming strange looking.

    in reply to: Deletion 5Q MDS Treatment #55843
    Tom Nelson
    Participant

    As mentioned before, have been on Aranesp for 2+ years and has kept the Hgb above 8 , down from 9.5 when stared. Had rash reaction from Revlimid 4 years ago at 5 mg. Have restarted Revlimid at 2.5 to see if I can tolerate. Rash seems to be coming back after 3 weeks. Will give it a good try. No transfusions so far. T

    in reply to: New to the Foundation at 79 years old. #55018
    Tom Nelson
    Participant

    Del5q. Hgb dropped below 8 again. Still taking the Aranesp every 2 weeks. Will be re-trying the Revlimid after 4 years off. ( rash problem). Will try the new lower dose of 2.5 mg and hope the rash does not reappear.

    in reply to: questions about new q5 detetion diagnosis #55003
    Tom Nelson
    Participant

    Aranesp every 2 weeks. Try (aranesp.com) Also took Granix (granixrx.com), a white blood cell stimulate to see if it help kick start more Red Cells, Did not do enough to continue use.

    • This reply was modified 10 months, 4 weeks ago by Tom Nelson.
    in reply to: New to the Foundation at 79 years old. #54977
    Tom Nelson
    Participant

    Good evening. I, 78 years, was diagnosed del5q 5+ years ago after a BMB. HGB had been dropping for 2 years. to 10.+. Went on Revlimed , but had to stop after 2 months due to rash reaction. HGB was normally 9.5. Went on Aranesp 2 1/2 years ago, every other week. been steadily downward to now 8.2-8.5. Now holding at these numbers. If Hgb goes lower, we may re-try the Revlimed with lots of Benadryl. Have not had a transfusion as of yet. Been in the low- mid 7’s after hospitalizations, but came back up to the 8’s. Am active at home, being wife’s caregiver, but have only 505% of strength and stamina as pre MDS. Had 2nd BMB this past spring with no major changes, just some new small variants. Would rather not start the transfusion regimen. Trying for another 5 years of activeness.

    in reply to: questions about new q5 detetion diagnosis #54952
    Tom Nelson
    Participant

    Am now only taking Aranesp every 2 weeks. Still holding Hgb between 8.0-8.6. Todays pre-count was 8.1. Will have shot tomorrow. Did try Revlimid as the primary antidote 4 years ago , but had to stop due to rash over the body. If the HGB starts dropping again. may re-try the Revliid and hope for the best.

    in reply to: questions about new q5 detetion diagnosis #54635
    Tom Nelson
    Participant

    I am del5q identified (age 77) for 5 years. Hgb went from 14. to 10.5 when finally diagnosed. Yes tiredness was the 1st major concern and continues. Hgb now maintain at 8.4 with 2 different shots ( 1weekly, 1 Bi weekly). I work in spurts and can do most required daily tasks. Had to quit yard work. Had to quit choral singing. Am my wife’s primary care-giver so need to be active. Thank goodness no transfusions required yet. Del5q is slow moving.

    in reply to: MDS High Risk #54575
    Tom Nelson
    Participant

    4 year MDS del5q patient. Started with Revlimed, then switched to bi weekly Aranesp. HGB went from 10+ to now 8.2 maintenance with the help of weekly Granix. February BMB showed still del5q, but now also 8+ or 3 legged Chromosome 8, additional variant.. Assume this is what is meant by Trisomy 8. lifestyle the same as before, Work in spurts and naps. Doc thinks the 8+ is/has caused the Hgb drop. Trisomy 8 seems to be a newer variant.

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