My 35 year old daughter was just told she has relapsed today. Only 18 months after her stem cell transplant. It is devastating. I thought it would last much longer.
The plan is Kyprolis twice a week for 3 weeks on and 1 week off. She will also be on dex.
What sort of side effects can my daughter expect from the Kyprolis, and does anyone have any tips for dealing with them?
Forums
Re: Kyprolis side effects
I am happy to report no serious side effects! I completed 8 months of Kyprolis / dex with Revlimid in March (6 treatments per month). I was very tired after my infusions, and initially nauseous, but that quickly subsided. After I completed the treatments, chemo brain has set in.
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Susan Penley - Name: Susan Penley
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 6, 2013
- Age at diagnosis: 55
Re: Kyprolis side effects
Thank you Susan. What did you do after the Kyprolis. I'm thinking they might want her to do another transplant.
Re: Kyprolis side effects
Hi Susan,
You can also find a lot more Kyprolis info in the post the Beacon folks started called "Useful a links to existing forum discussions."
They have a sentence that includes the word Kyprolis, and if you click on the word Kyprolis, it will take you to numerous postings several of us have made commenting on this drug.
Best wishes to your daughter and your family!
Chris M.
You can also find a lot more Kyprolis info in the post the Beacon folks started called "Useful a links to existing forum discussions."
They have a sentence that includes the word Kyprolis, and if you click on the word Kyprolis, it will take you to numerous postings several of us have made commenting on this drug.
Best wishes to your daughter and your family!
Chris M.
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Chris M.
Re: Kyprolis side effects
I started Kyprolis in Oct 2012 as maintenance therapy after a tandem transplant. I stayed on it for a year and then switched to Revlimid. The only side effect was extreme fatigue. I have 2 children under 12 and found it hard being a mom whilst being so very tired.
Good luck
Good luck
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Anonymous
Re: Kyprolis side effects
I am currently being treated with Kyprolis and dexamethasone. I have had four cycles of the treatment regimen and am getting ready for a second stem cell transplant in January.
I'm also trying to understand what sort of side effects are typical for Kyprolis. I find generally just fatigue and the usually aches. I had some transient peripheral neuropathy come back (had it bad from Velcade, but it went away a lot).
My biggest issue: I've had the stomach flu each cycle! My off weeks and then beginning of 4th cycle!
Not fun. I'm wondering whether the Kyprolis impairs gut immunity somehow. I've never really been susceptible to the stomach flu, only got if after my last transplant, and then a few more times over 8 years.
Thanks for any insight.
I'm also trying to understand what sort of side effects are typical for Kyprolis. I find generally just fatigue and the usually aches. I had some transient peripheral neuropathy come back (had it bad from Velcade, but it went away a lot).
My biggest issue: I've had the stomach flu each cycle! My off weeks and then beginning of 4th cycle!
Not fun. I'm wondering whether the Kyprolis impairs gut immunity somehow. I've never really been susceptible to the stomach flu, only got if after my last transplant, and then a few more times over 8 years.
Thanks for any insight.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
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