MDS starting Revlimid--Side effects????

[5Q-spray]

Hi everyone!
I am to receive my Revlimid today, boy things have changed fast. I was diagnosed last June with MDS 5Q- and figured I would be on the "watch and wait" plan for some time. My 2nd BMB in February showed 10-15% blast and blood levels are dropping. I have had 2 blood transfusions and hospitalized with a staph infection within the last two weeks. Revlimid is expected to be delivered today! Just wondering about how Revlimid side effects have affected you? If you worked were you still able to? Was fatigue alot worse?

[Helen Robinson]

Just a few points to watch. You need to be monitored weekly via blood tests. Your neutrophils may drop suddenly causing a risk of unexplained infection. This happened within a month with my husband. After a short hospital stay with antibiotics and a two week wait for the neuts to rise, he started again but only with a 5 mg dose. Everyone is different with their response. It worked after four months and he was Tx free for 5 months.

Yes you will be very fatigued and rest a lot but the improvement was like a switch going on. It can resverse the 5q- but did not happen with David.
they tried the higher dose but it made him worse but the good news is that a over a tesr later he has longer time between Txs, now over three weeks.

Good luck and be patient. It is like chemo so take care.

Helen

[launch]

Can anyone out there provide feedback and/or recommendation on Revlimid and anything my husband should expect?