Hi Jane84,
Wow, how are you doing with this news? I know everyone is different, but I can say that when I relapsed, it was crushing, and there is definitely a grieving process. I'm still going through that, because I have yet to re-establish some kind of steady state.
I relapsed at 23 months after auto SCT, and then again after 4 months of bortezomib / lenalidomide / dexamethasone - while on it! Now I'm on carfilzomib / lenalidomide/ dexamethasone and it's working.
Good luck, and I'll be following your progress.
Forums
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Rise in kappa free light chains - possible causes?
Hi Tracy J,
I must admit I am still in shock, and I am trying to convince myself another line of therapy will provide a longer remission.
I see you went through a difficult time too. Hopefully you get a much much longer remission this time – why not something like over 10 years?
Good luck to you too!
I must admit I am still in shock, and I am trying to convince myself another line of therapy will provide a longer remission.
I see you went through a difficult time too. Hopefully you get a much much longer remission this time – why not something like over 10 years?
Good luck to you too!
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jane84 - Name: jane84
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 11,2012
- Age at diagnosis: 44
Re: Rise in kappa free light chains - possible causes?
Relapse is so disappointing. Our daughter relapsed 18 months after her SCT. Since she responded so well to induction and the SCT, with a CR, we expected remission to last a lot longer. She was on maintenance with Revlimid at the time of relapse.
Things became more fearful when she didn't respond to carfilzomib (Kyprolis) or the high dose DCEP she had in November. She is one month in doing a clinical trial at Penn and they are already seeing signs that it is working. She is doing Pomalyst (pomalidomide), dex, and oprozomib.
With this disease, it does seem like a lot of trial and error to find what works for each individual, but there are a lot of things out there to put in different combos.
Things became more fearful when she didn't respond to carfilzomib (Kyprolis) or the high dose DCEP she had in November. She is one month in doing a clinical trial at Penn and they are already seeing signs that it is working. She is doing Pomalyst (pomalidomide), dex, and oprozomib.
With this disease, it does seem like a lot of trial and error to find what works for each individual, but there are a lot of things out there to put in different combos.
Re: Rise in kappa free light chains - possible causes?
Thank you, Terrij, this is something I need to read.
Your daughter is lucky to have you. It is good to hear that they found something that works for her.
Your daughter is lucky to have you. It is good to hear that they found something that works for her.
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jane84 - Name: jane84
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 11,2012
- Age at diagnosis: 44
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