questions about new q5 detetion diagnosis

[Lee Warner]

Hello Tom,
Revlimid rash caused my husband to stop taking the 10 mg dose. Recently his ocologist, with agreement from a Mayo hematologist, recommended 2 1/2 mg taken with a “cocktail” of Pepcid, Claritin, and L-Lysine. If that low dose can be tolerated without rash for a couple months, they will increase to 5 mg and continue the “cocktail” remedy.

Two years ago this was not offered here as a solution; however, there has been some success with low doses and remedies to stave off the rash. What they want to avoid with Revlimid is Stevens-Johnson syndrome caused by Revlimid (which is Lenalidomide) and can start this life-threatening skin disease. Catch it soon!

It might be worth a try at a low dose. If you’ve exhausted other treatments– Vidaza/azacitidine, Procrit/Retacrit, Aranesp, and whatever other remedies recommended by your oncologist and hematologist. I’m advised the next step after chemical failures is packed red blood cell transfusions. That comes with risk: antibody rejection, infection, and later on iron overload. Careful caretaker monitoring and diligent observation by doctors.

This disease is troublesome, but people can live good lives for quite a long time. Each remedy gives the patient a few years or so. I hope this information helps.

[Tom Nelson]

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

[lisab]

Mary
I’m Canadian as well. Diagnosed with del 5q almost 3 years ago. Been on revlimid 5mg since. Started on 10mg but my white count went up. I’m maintaining a 138 to 141 hemoglobin and still tire easily. It is frustrating but I’ve learned where my limits are. Over exertion I’ve learned comes a painful price.
Good luck Lisa B

[Nancy Byham]

Spouse has 5q. Diagnosed 8 yrs ago, confirmed 3 yrs. Recently his hemoglobin in March was/has held about 11. Aprildropped to 9, (tried b-12shots) then June dropped to 6.5-7.
I have read everything and normally protocols would be thalidomide, then blood transfusion. Doctor put on procrit-4 weeks in raised .9.
Can anyone come x plain this course of treatment? And doc didn’t explain side effects of procrit. Can be bad as disease. He won’t stop smoking , enlarged heart and cancer is aggressive (renal and breast ) I’m at a loss expecting to find him – however I find him.
Any observations? Answers?

[Jack Allen]

Nancy, your husband has a choice between 2 evils.
Your body makes more haemogloben when you smoke to compensate for the reduced oxygen you inhale.
He will drop at least 1.0 if he quits.
I was running perfectly at 12 for several years and decided to quit and fell to 9 in 2 months. Doctor said it was normal to lose 1.0.

[lisab]

Hi Mary
I’m a Canadian with del 5q as well. I was diagnosed almost 3 years ago. Been on revlimid and have a few side effect. Benefits have out weighed side effects. Bloodwork results have been “perfect”. The frustrating part is my energy level is still below normal. Part of the disease unfortunately. I have had to learn to accept my limitations and can still do most things just for shorter periods of time.
Good luck lisab

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