I have been doing so much research since my father was diagnosed December 10, 2015. They placed him on 20 rounds of radiation with Velcade, which his body only accepted 3 shots. They then changed him to Revlimid with Ninlaro. First day he has breathing problems, and HE decided he no longer wanted any chemo. All he wants is pain meds, and he is taking some natural stuff that is believed to cure cancer.
I myself was diagnosed with cancer February 8, 2015.
It's been hell lately.
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stage3MM - Name: Evelyn
- Who do you know with myeloma?: dad
- When were you/they diagnosed?: 12/10/2015
- Age at diagnosis: 69
Re: Problems with Velcade and with Revlimid and Ninlaro
I had 10 regimens of Velcade until they discovered it was attacking my nerves. Been off since December, but the neuropathy is getting worse. Oncologist is sending me to a pain management doctor next week as it looks as though the nerve damage is permanent.
I start Kyprolis Monday and it looks like it will be extended, so I had a port installed. The pain gets so bad at night it is very difficult to sleep.
Good luck and stay positive.
DT
I start Kyprolis Monday and it looks like it will be extended, so I had a port installed. The pain gets so bad at night it is very difficult to sleep.
Good luck and stay positive.
DT
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Tom74 - Name: Tom Meredith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 9/5/15
- Age at diagnosis: 73
Re: Problems with Velcade and with Revlimid and Ninlaro
Hello Stage 3:
I am truly sorry for your situation, being both a patient and a caregiver at the same time. Although you may be more experienced and more researched than myself, I will offer you one idea for your father. Several posters have pointed out recently that they have had good results with two drugs only, which are usually Revlimid and dex. Once some time has passed and your father gets over the radiation, maybe he can tolerate the two drug regimen. What is found in some cases is that once the myeloma gets under control, the patient feels better, and a third drug could be added back in. That is what occurred to Tom Brokaw, as he reported in his book that came out about a year ago. After six months of Revlimid and dex, he switched to Revlimid, Velcade, and dex (RVD), and reached a complete response (CR) at about a year.
Good luck.
I am truly sorry for your situation, being both a patient and a caregiver at the same time. Although you may be more experienced and more researched than myself, I will offer you one idea for your father. Several posters have pointed out recently that they have had good results with two drugs only, which are usually Revlimid and dex. Once some time has passed and your father gets over the radiation, maybe he can tolerate the two drug regimen. What is found in some cases is that once the myeloma gets under control, the patient feels better, and a third drug could be added back in. That is what occurred to Tom Brokaw, as he reported in his book that came out about a year ago. After six months of Revlimid and dex, he switched to Revlimid, Velcade, and dex (RVD), and reached a complete response (CR) at about a year.
Good luck.
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JPC - Name: JPC
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