First time poster. Quick history ... I was diagnosed January 2015. Had autologous stem cell transplants in June 2015 and October 2015. Started maintenance therapy in February 2016, delayed because of frequent infections, Velcade and dex every other week, daily thalidomide.
In April, my kappa free light chain level began to rise slowly, and a PET scan showed additional new lesions. Changed therapy to Kyprolis and dex every other week, cyclophosphamide every other week.
Two weeks ago, I found a small nodule on upper right chest, near clavicle. Biopsy showed that multiple myeloma had invaded soft tissue, which explains some of the numerous non-bone lesions that showed up on the PET.
Anyway, confirmed with oncologist that this is a very aggressive, high-risk form of the disease. His plan is to see if the Kyprolis has any effect on it at this point. My local oncologist is not averse to clinical trials, however the oncologist at the university hospital that is in charge of my care bristles when we bring it up, saying this is not a time to panic.
I see that there are a multitude of clinical trials for multiple myeloma, several at the Mayo Clinic in Rochester, which would be very convenient for me.
What approach should take to treating my relapse? When is it time to consider a clinical trial? How do you choose?
We have contacted Mayo and a few other research hospitals, and they have requested records, which I have sent electronically. Do I trust them to prequalify me for what trial may be the best fit and provide the best possibility of significant benefit to me?
Maybe odd questions, but this seems pretty complex to me.
Thanks!
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Taylor410 - Name: Bob O'Hern
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: January 2015
- Age at diagnosis: 56
Re: Early relapse - how should I select my next treatment?
I am a little bit of the same situation. How high did your kappa light numbers go?
I just completed my first autologous stem cell transplant at the end of May and the next week my kappa light chain level had increased from 40 before my auto to over 100. I am now on Day +56 after my auto and I see my myeloma specialist again tomorrow. When I saw him in the middle of June, he mentioned trying an immunotherapy drug.
What trials are they interested in enrolling you in?
AC
I just completed my first autologous stem cell transplant at the end of May and the next week my kappa light chain level had increased from 40 before my auto to over 100. I am now on Day +56 after my auto and I see my myeloma specialist again tomorrow. When I saw him in the middle of June, he mentioned trying an immunotherapy drug.
What trials are they interested in enrolling you in?
AC
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: Early relapse - how should I select my next treatment?
I am actually not certain how high the kappa free light chains were at diagnosis. I only have access online to the labs after being referred to the university hospital.
On April 3, 2015 it was 153, and on April 29, 2015, the count was 205. On May 6 it was 15, and steadily dropped, remaining between 3 and 4 from June 2015 until April 2016. In May the count was 10.1, and in June 13.3.
Next labs are next Tuesday.
On April 3, 2015 it was 153, and on April 29, 2015, the count was 205. On May 6 it was 15, and steadily dropped, remaining between 3 and 4 from June 2015 until April 2016. In May the count was 10.1, and in June 13.3.
Next labs are next Tuesday.
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Taylor410 - Name: Bob O'Hern
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: January 2015
- Age at diagnosis: 56
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