[Tom Nelson]

I am also del5q. Diagnosed by Bmb. 77 years old, diagnosed 3+ years ago when Hg dropped below 10. Went on Revlimid 5Mg, 21 on and 7 off. After 1 1/2 months developed a rash and had to stop. Revlimid seemed to work and HG stayed above 10 for about 3 months. Have now been on Aranesp for 2+ years. Was getting a monthly injection when the hg went below 10. Have now progressed (regressed) to an injection every 2 weeks and the hg is averaging 9.2. Have maintained same level of tiredness for past 3 years. Blood/oxygen level is still good at 96/97. Have not had to have an infusion. Lowest hg was 8.2 after a cut/bleed out a year ago. Am leading an almost normal life.

• This reply was modified 1 month ago by Tom Nelson.

[Tom Nelson]

Treatment for MDS Del5q. First month, went to plan 21 days on, 1 week off. Second month 2 weeks on, then body itch, then body rash. one more week , then had to stop. Now bi weekly Aranesp.

[Tom Nelson]

I have MDS Del5q. I gat a blood draw every 2 weeks and an Aranesp shop every 2 weeks I maintain at about 9.2 Hgb with this protocol. No transfusions yet. Dr. said I have a bunch of years to go. I have cut back on lifestyle, but still get all home tasks completed, in time. It isn’t perfect, but very adequate.

[Tom Nelson]

I’m 76 coming up to 77. Diagnosed DeL5q 3 years ago. Now on Aranesp once or twice a month keeping RBC above 9. No transfusions yet All other tests in order. Sleep well at night and 1-1/2 hour nap mid day. Have learned to keep busy when possible. Chair and couch too handy. Do every thing in 10-15 minute spurts, then rest. Have other heart and cancer issues, but under control. With the virus, I would like to take walks, but afraid if I go around the block, I’ll be 1/2 way and too tired to return. Maybe a physical/lecture would help from his IM doctor with an emphasis on exercise or Re-hab/PT. My oncologist defers all other non-MDS DEL5q issues
to my IM.

[Tom Nelson]

I am MDS del5q. 3 years into the program. I have learned to work in short spurts, maybe an hour. Evening , I’m just plain exhausted. Still able to get most daily routine household functions taken care. Hgb hanging about 9. Taking Aranesp every other week. It’s a new life’s routine.

[Tom Nelson]

Almost 2 years ago, started Revlimad when hg went to 9 ( MDS del5q).No reactions 1st month (21 day on ,7 off) Mid second month started a hive like rash, Major itching all over the body. Stopped the Revlimad. Did notice hg went up to 11 and stayed above 10 for about 3 months. Now on monthly Aranesp with hg holding at 9 ish

[Tom Nelson]

Started Aranesp 8 months ago. 1 Shot 500mg a month holding HG at 10ish, No side effects., just cost. Could not tolerate Revlimid, for MDS del5q

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