[Diana Blair]

Stacy et Al., who posted in regards to Luke’s post. I appreciate all the information. I’ve had squamous cell carcinoma on my face removed, nasal cell cancer on right arm removed- none of these do I relate to Revlimid – they are my lack of being diligent with sunscreen over the years.
Stacy, I understand where you have been. It took almost 2 years to get my definitive DX with MDS Del5q- went to Center of Excellence to get accurate diagnosis. I had 27 transfusions over period of18 months.. I was in iron overload. Started Revlimid 11/19 and have not had transfusion since 11/30/19. My hemoglobin is great at 12. I’m moderately immune compromised with decreased neotrophils and white blood count of 2(variable dependent on when labs drawn during my 21day cycle of Revlimid. I had rash for 2 1/2 cycles and had treatment with steroids, steroid ointment, andAtarax for severe itching. Rash disappeared and I’ve been able to stay in 5 mgm for 21 day cycles. I also take antihistamine twice daily. I’ve had usual effects of drug with bone pain, fatigue, weakness, insomnia, diarrhea nausea- all of these are variable dependent upon where I’m at in my22 day cycle- I call it my ” wall” and it usually hits toward last 5 days of my cycle. I simply rest, drink lots of fluids, take Tylenol when needed. Otherwise I’m doing really well- so far this spring I’ve been able to work in my yard for extended time, resting if I became fatigued. I have usual bruising that is not really harsh to me as my platelets have remained within fairly normal range. I’m so grateful for this drug as it has extended my life and I’m considered fairly low risk for progression at this time, so I truly am blessed with every day I have. It’s given me time with my great nieces and nephews which is so precious to me.

[Author]

Posts