[Nancy Byham]

Update: now cardiologist put him on lasix as he gained 8 pounds in 3 days. Found an arrhythmia- plus his jugular was jumping out of his neck so now blood thinners? Like he can hit his arm and it’s black from bruising. His red cells are affected. I don’t understand the reasoning. Plus cardiologist wants a nephrologist brought on board as very aggressive kidney cancer on paternal side. He has an echo Monday , oncologist tomorrow-to check heart damage. And check folic levels.

[Nancy Byham]

Update: husband only one month of revlimid- mega kicked him physically. So doctor stopped but continued prokrit for another month. Lo n behold , hemoglobin has risen to 11.8 from 7. And no prokrit no nothing just sublingual B12 . Doctor is only using drugs IF needed.
Praying you all have great Xmas news also!

[Nancy Byham]

Ok – doctor said ALL counts dropped significantly- changing to weekly blood tests to play with Revlimid dosage and schedule. May change 14 days on- 14 off, or 7off . Can’t eat raw veggies or fruit as immune system is now compromised. His white count has always remained strong until now.
His digestive system decided to swing to each extreme. He’s much more tired , did better week #2 on meds. Week 3 kicked him to the curb . But still got his procrit .
He’s 72. Doctor withholding transfusions as that is his only alternative after these meds.

[Nancy Byham]

Husband just finished first round of revlimid- also gets weekly shot of procrit. first blood test – within 3
hours doctor is halting revlimid due to low counts. His hemoglobin hangs 6.5 to 8.5 . He’s on his 7 day med free so how bad is this? I’ve noticed his skin cancer has flared on his back. Is this indicative of progression? I can deal with it just need some honesty and no “ we’re extending your life” BS. There’s very aggressive cancer history with sister and paternal side.

[Nancy Byham]

Ok I’m absolutely blown away- we are on fixed income. We have supplemental to Medicare with minimal copays.
But $2000 copay ? Who can afford that?
Why even suggest this treatment? There are no programs or coupons available either. And the cost with no insurance?
$35000/month😳 good ol USA .

[Nancy Byham]

As far as I know it’s lenalidomide. I guess I’ll wait till it’s delivered and see for sure what it is.
Thanks

[Nancy Byham]

Husband about to start lenalidomide 21 days on 5 off. He just finished 3 months of procrit which sizzled after first month. Are the side effects bad, does or has anyone not tolerated this treatment?
His gene pool alone has aggressive cancers( renal, breast,lung, brain) does this drug trigger other cancers taxing the body with the side effects? So many questions………..so many unknowns

[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?

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