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Has anyone with Amyloidosis received more than 24 injections of Darazalex Fastpro?
I thought I read somewhere that there was a limit of 24.
Thanks for any and all replies.
Jim
I’m prescribed Darzalex 1x/month now
I’m experiencing lower back pain-and haven’t strained my back in any way. Just wondering if it could be the Amy?
Rob, I am also on Hydrocodone and it does help. My pain levels also are in the 8-9 levels. Not at all fun :-( I am targeting Kyphoplasy as a possible solution--hopefully by end of April (today is… read more
Every time I ask how long I have to keep doing the chemo it’s always for the foreseeable future. I’m on it every other week. It would be nice to be done with it. At least for a while. 😞
I guess I should just be grateful it’s working!
Yes I am grateful it is working. Hoping to take a break also.
I have AL Amyloidosis
I completed 6 months of weekly CYBORD+D plus 6 months bi-monthly CYBORD+D treatments-last treatment was July 2023
I reached CHR and now 3 months later my lambda light chain numbers are barely creeping up.
It is 27.
I just started today on Darzalex Faspro once monthly. My doctor is talking about starting the WHOLE treatment process again in January. The CYBORD+D. Just wondering, is this usual? I just don’t think I can handle another 6 months of treatment. I was sick all… read more
Have you gotten a second opinion (go outside your current treating doctor’s network). By law you are allowed a 2nd option.
Is this medication covered by medicare? How about by medical covetage. I need to know about how costly out of pocket costs may be.
Depends on what you have in addition to to Medicare. Like some I have BCBS Advantage and they pretty much paid for the treatments until I entered the donut hole and then we received bills in the… read more
What treatment options are being offered to you/are you doing? The organ affected is my kidneys.
Thankfully, my wife’s insurance has covered almost everything, they have done to me except the deductible on prescriptions. If we didn’t have the insurance, we would have lost our home, cars, boat and… read more
Just diagnosed at 57 w/ AL. In process of getting two opinions.
Hate to hear about your back problems Vern. I. didn't know amyloidosis could do that. I wish you a pain free future.
My husband has Al Amyloidosis
I haven't had much problem swallowing. Sometimes I have indigestion. But l have noticed for about 2 weeks my voice sounds like it's changing, like a 12 year old boy. Cracking and stuff. I'm a 70… read more
My husbands EGFR dropped from 37 to 27 after 3rd chemo treatment, has anyone else experienced this?
We are extremely fortunate in the aspect that he is 100% VA disabled, so we pay nothing for treatment. I always say you can find something good in something bad! Ernie said thank you😘
