To all my MDS colleagues,
My roller coaster ride is really climbing a high point, my Hgb was 11.3 last week after 9 weeks on Revlimid along with the other drugs. I'm enjoying the "view" and we are travelling a little to visit friends, vacation spots, etc.,while I'm doing so well. I'm hoping for a flat ride at the higher levels for a while.
Hi Neel,
I used Thalidomide for 30 months starting in April of 2004. My blasts were at 14-16% blasts. In my case I responded within 3-5 weeks and my blood counts started increasing. Studies show about 25-30% of MDS patients may respond to thalidomide.
I took Procrit and Neupogen until the blood counts increased to safe levels.
Over the period of Thalidomide use I experienced:
1. Increased sleepiness and hard to wake up in mornings, lots of coffee helps - HA.
2. Neuropathy in the hands and feet. This results in a numbness and "tingling" in the feet and hands. One gets used to this and it is not too painful. The neuropathy does not go away after stopping the medication. Neurontin can help reduce the pain, I take 300 mg/day. On the whole the neuropathy is a small price to pay for controlling the MDS. I take Acytel-L-Carnitine, a vitamin-herb, 500mg 2/day; it was recommended by one MDS center of excellence. Not sure how much it helps but I always taken it.
3. General tiredness and fatigue seem to accompany MDS drugs, Procrit and Neupogen.
While Thalidomide is not very popular with many MDS doctors it worked very will in my case, actually with a 2nd used starting about 2 years ago.
I hope your father responds well.
Regards,