I thought I would do my best to relay my allogeneic experience since this is less talked about than the autos that so many of us have had. Today is my consent conference at Seattle Cancer Care Alliance (SCCA) and I start conditioning on Friday.
For background, I am 49 and was diagnosed in April 2014. I did 6 rounds of Revlimid, Velcade, and dex (RVD) with some reduction, but relapsed within 3 weeks of stopping. After that I did 2 rounds of carfolzimib (Kyprolis) TD-PACE, 1 round of Velcade TD-PACE, followed by a failed stem cell collection.
(TD-PACE = thalidomide and dexamethasone + cisplatin, doxorubicin, cyclophosphamide, and etoposide.)
I took a few weeks off and did a two-day infusion of etoposide, which allowed me to then collect 21.5 million cells in 3 hours!
After my autologous stem cell transplant (ASCT), which was February 9, 2015, my kappa light chains are way down (but not normal), my marrow MRI shows some active disease, but my bone marrow biopsy (BMB) shows zero myeloma. I am in good shape for my mini-allo.
I am participating in a clinical trial for mini-allo where the donor is not a perfect match. My brother is a 90% match and that is the best they could find. The clinical trial is looking at a combination of 3 anti-rejection drugs that are supposed to reduce the incidence of severe graft versus host disease (GVHD). The drugs are cyclosporine, mycophenolate mofetil (MMF), and sirolimus.
I am going to try to report in as much as I can during this process, which has a Day Zero next week!
Cindy
Forums
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CindyBrown - Name: Cindy Brown
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/26/14
- Age at diagnosis: 48
Re: My mini-allo transplant journey
Hi Cindy,
Thanks for being such a pioneer in this trial! Best of luck to you with this procedure and I'm really looking forward to your updates.
Thanks for being such a pioneer in this trial! Best of luck to you with this procedure and I'm really looking forward to your updates.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: My mini-allo transplant journey
Will be interested to hear your experience. My daughter may be doing this with her brother as a half match.
Where are you doing this? Jefferson in Philadelphia has this clinical trial with reducing graft versus host disease.
Good luck.
Where are you doing this? Jefferson in Philadelphia has this clinical trial with reducing graft versus host disease.
Good luck.
Re: My mini-allo transplant journey
Thank you for this information.
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: My mini-allo transplant journey
Hello Cindy,
I wish you lots and lots of success with the allo transplant. Thanks so much for sharing with us how things go along the journey. I am looking forward to your updates.
I wish you lots and lots of success with the allo transplant. Thanks so much for sharing with us how things go along the journey. I am looking forward to your updates.
Re: My mini-allo transplant journey
Hello Cindy,
Thanks a lot for keeping us informed about your mini-allo. I wish you all the best.
Thanks a lot for keeping us informed about your mini-allo. I wish you all the best.
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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: My mini-allo transplant journey
Today I had my oral medicine review, pharmacist meeting, GYN exam and chemo teach. I picked up a grocery bag full of medications - see picture below!
Fortunately, I have been given a very detailed schedule of when to take each anti-rejection drug. I have figured out if I swap breakfast and lunch I can manage some dairy without medication interference. It's going to be a long haul, but hopefully worth it.
Tomorrow morning I have my first of three fludarabine doses. It's supposed to have relatively few side effects - I am hoping that is the case for me.
More to come!
Cindy
- medications-small.jpg (89.71 KiB) Viewed 2527 times
Fortunately, I have been given a very detailed schedule of when to take each anti-rejection drug. I have figured out if I swap breakfast and lunch I can manage some dairy without medication interference. It's going to be a long haul, but hopefully worth it.
Tomorrow morning I have my first of three fludarabine doses. It's supposed to have relatively few side effects - I am hoping that is the case for me.
More to come!
Cindy
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CindyBrown - Name: Cindy Brown
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/26/14
- Age at diagnosis: 48
Re: My mini-allo transplant journey
I remember getting the grocery bag prior to the auto SCT and being told not to lose it as the bag contained about $20,000 worth of pills and such. I'll bet yours is worth even more!
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: My mini-allo transplant journey
Good luck with the transplant Cindy. I have not yet been in a clinical trial myself and I respect your courage.
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Cerberus - Name: martin
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2010
- Age at diagnosis: 57
Re: My mini-allo transplant journey
Cindy,
Thank you so much for your willingness to share this process with us!
Since no one else has asked, I assume that most people know the difference between a "mini-allo" and a regular "allo". I know what the regular allo is. I am not, however, familiar with the mini. I am guessing I may not be alone.
Based on your comments, I'm thinking that a "mini" doesn't, as the name might imply, have anything to do with being a "less-than" procedure relative to the regular one? I'm also guessing that the nomenclature has more to do with % of match to your own, combined with the use of anti-rejection meds?
My second question pertains to your statement:
"I took a few weeks off and did a two-day infusion of etoposide, which allowed me to then collect 21.5 million cells in 3 hours!"
I went and looked up etoposide and found that this is indeed one of its uses. On the other hand, I don't recall having heard of anyone else having used it.
Clearly, at least in your case, it works. I can't help but wonder why it's not used more often, especially for those of us who were not able to collect enough healthy cells for a second transplant?
Thanks again, Cindy!
Aloha
Daniel
Thank you so much for your willingness to share this process with us!
Since no one else has asked, I assume that most people know the difference between a "mini-allo" and a regular "allo". I know what the regular allo is. I am not, however, familiar with the mini. I am guessing I may not be alone.
Based on your comments, I'm thinking that a "mini" doesn't, as the name might imply, have anything to do with being a "less-than" procedure relative to the regular one? I'm also guessing that the nomenclature has more to do with % of match to your own, combined with the use of anti-rejection meds?
My second question pertains to your statement:
"I took a few weeks off and did a two-day infusion of etoposide, which allowed me to then collect 21.5 million cells in 3 hours!"
I went and looked up etoposide and found that this is indeed one of its uses. On the other hand, I don't recall having heard of anyone else having used it.
Clearly, at least in your case, it works. I can't help but wonder why it's not used more often, especially for those of us who were not able to collect enough healthy cells for a second transplant?
Thanks again, Cindy!
Aloha
Daniel
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
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