I got my first GCSF shot yesterday to prep me for stem cell collection.
I will share a little background for those who are new and want to follow the story of an auto/allo transplant.
I was 48 at diagnosis in April 2014. I had multiple lytic lesions, a large plasmacytoma, 80% plasma cells in my bone marrow, and kappa FLC 5136. After 4 rounds of RVD [Revlimid, Velcade, dexamethasone] and radiation, I was down to 50% plasma cells and kappa FLC of 1600.
I came up to Seattle from CA to treat with Dr. Libby at Fred Hutchinson. He decided on 3 rounds of VDT-PACE (inpatient 96-hour infusion). Those were progressively harder to tolerate. I had a bone marrow biopsy right before the third round, which showed 5% cells and kappa FLC were 68. This last phase was my induction phase.
If all goes as planned (something a myeloma patient should never say), I will be collecting cells right before Christmas, and they will give me a few days break to spend with my husband and 5 kids, who are all flying up to Seattle to visit me.
The allogeneic transplant will be 45 days after the autologous, and I may be part of a clinical trial.
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: Starting tandem auto-allo transplants
Good luck to you. I've never heard somebody doing an allo after the ASCT without seeing if the ASCT actually worked. In fact, why not go straight to allo? I know of one person getting an allo transplant only because the tandem ASCT he had didn't work for his aggressive multiple myeloma.
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Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
Re: Starting tandem auto-allo transplants
Hi Cindy,
Best of luck with the transplants. Sounds like you are going to be going into the auto either in CR or something very close. That gives you the best chance for success. I was in CR when I did my allo and it is good to know mentally that you are not likely to have to try and battle the myeloma immediately after the allo. Dr. Libby sounds like my kind of doctor!!! IMO aggressive therapy is the way to go early in disease course for younger myeloma patients.
If you do not mind my asking, is this the trial you are being considered for?
http://www.fredhutch.org/en/treatment/clinical-trials/detail.8414.html
I was not in a trial when I did my allo.
Mark
Best of luck with the transplants. Sounds like you are going to be going into the auto either in CR or something very close. That gives you the best chance for success. I was in CR when I did my allo and it is good to know mentally that you are not likely to have to try and battle the myeloma immediately after the allo. Dr. Libby sounds like my kind of doctor!!! IMO aggressive therapy is the way to go early in disease course for younger myeloma patients.
If you do not mind my asking, is this the trial you are being considered for?
http://www.fredhutch.org/en/treatment/clinical-trials/detail.8414.html
I was not in a trial when I did my allo.
Mark
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Mark11
Re: Starting an auto/allo transplant
Hi Stan W.
Allos work best in first complete response. Do not forget, an auto is just a high dose of melphalan. An allo is the most successful form of immunotherapy for blood cancer to date. The healthy functioning donor immune system works best when it comes in an MRD setting. An auto is not a substitute for an allo. An allo is most effective when used as maintenance therapy. Allos are typically not effective for patients with progressive disease or when used as "therapy of last resort". In myeloma they have been used as consolidation and maintenance since it is only recently with the novel agents that a certain percentage of myeloma patients could get to MRD negative status without allo transplant.
The tandem auto-allo started for myeloma started basically for 2 reasons. Prior to novel agents, high dose melphalan was the only way to get a percentage of patients to VGPR or CR prior to the transplant. The tandem also breaks up the high dose chemotherapy from the immunotherapy of the donor cells. Myeloablative allo transplants are only appropriate therapy for a small portion of younger myeloma patients like me. The tandem allows older patients to get the benefits of a healthy functioning donor immune system
Mark
Allos work best in first complete response. Do not forget, an auto is just a high dose of melphalan. An allo is the most successful form of immunotherapy for blood cancer to date. The healthy functioning donor immune system works best when it comes in an MRD setting. An auto is not a substitute for an allo. An allo is most effective when used as maintenance therapy. Allos are typically not effective for patients with progressive disease or when used as "therapy of last resort". In myeloma they have been used as consolidation and maintenance since it is only recently with the novel agents that a certain percentage of myeloma patients could get to MRD negative status without allo transplant.
The tandem auto-allo started for myeloma started basically for 2 reasons. Prior to novel agents, high dose melphalan was the only way to get a percentage of patients to VGPR or CR prior to the transplant. The tandem also breaks up the high dose chemotherapy from the immunotherapy of the donor cells. Myeloablative allo transplants are only appropriate therapy for a small portion of younger myeloma patients like me. The tandem allows older patients to get the benefits of a healthy functioning donor immune system
Mark
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Mark11
Re: Starting tandem auto-allo transplants
Yes, Mark, that is the trial I will be in. Dr Bensinger feels doing the auto first is important to have a clean base for the allo, so there are less myeloma cells to go after with the radioactive isotope. I would love to do just an allo, but insurance doesn't like that idea and both doctors here think the tandem is better.
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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: Starting tandem auto-allo transplants
Thanks, Cindy. I like when the doctors try and hit the disease from as many different pathways as possible upfront. The radioactive isotope is one more pathway.Someone sent me a link to a video discussing a study that was started 15 years ago using tandem auto - nonmyeloablative allo for newly diagnosed patients. Small study, but a good percentage of patients that achieved MRD negative status appear to be cured. Those patients had no benefit from novel agents. All positive vibes that this trial will cure even more patients and that you will be one with a great outcome! B Bruno et al., "Prospective Molecular Monitoring of Minimal Residual Disease after Non-Myeloablative Allografting in Newly Diagnosed Multiple Myeloma," ASH 2014 abstract 732 (link)
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Mark11
Re: Starting tandem auto-allo transplants
That's what I am hoping for, Mark!
I found out at my team conference this week that one of my brothers is a match, which is great. I also found out I have a lesion that has resorbed part of the roots of one of my molars, which is apparently very rare. I have an excellent dental history, but they are having me see an endodontist before the first transplant, just in case.
Always something!
I found out at my team conference this week that one of my brothers is a match, which is great. I also found out I have a lesion that has resorbed part of the roots of one of my molars, which is apparently very rare. I have an excellent dental history, but they are having me see an endodontist before the first transplant, just in case.
Always something!
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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: Starting tandem auto-allo transplants
Hi Cindy,
I'm just over six months out from getting my donor cells on the same trial you are enrolling in. I did an auto last Christmas, followed by an unrelated allo in May.
My experience has been pretty good overall, currently in CR, and am back to work. I will sing the SCCA praises all day long – they have been wonderful.
As far as issues I may have had, really my biggest obstacle was fatigue. For the first six weeks or so, I was just constantly exhausted. Some stomach issues, but nothing really awful. GVHD has been a consistent issue, although it has responded well to relatively low med doses.
Best of luck in your journey, and look forward to hearing your successful story.
Eric
I'm just over six months out from getting my donor cells on the same trial you are enrolling in. I did an auto last Christmas, followed by an unrelated allo in May.
My experience has been pretty good overall, currently in CR, and am back to work. I will sing the SCCA praises all day long – they have been wonderful.
As far as issues I may have had, really my biggest obstacle was fatigue. For the first six weeks or so, I was just constantly exhausted. Some stomach issues, but nothing really awful. GVHD has been a consistent issue, although it has responded well to relatively low med doses.
Best of luck in your journey, and look forward to hearing your successful story.
Eric
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Eric T - Name: Eric T
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June, 2009
- Age at diagnosis: 46
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