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Re: My mini-allo transplant journey
Very glad to hear this, Cindy!! Please continue to keep us posted.
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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
Cindy,
I find this thread and your great bravery very useful. I too may be facing an allo transplant at SCCA.
You haven't posted in this thread for so long, I hope all is well with you.
I find this thread and your great bravery very useful. I too may be facing an allo transplant at SCCA.
You haven't posted in this thread for so long, I hope all is well with you.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: My mini-allo transplant journey
Hi Cindy,
I am currently in your situation trying to decide if I should do an allo. I was wondering how you are and what you had decided to do.
Thanks!
Chrys
I am currently in your situation trying to decide if I should do an allo. I was wondering how you are and what you had decided to do.
Thanks!
Chrys
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Chrys - Name: Chrys Roussianos
- Who do you know with myeloma?: myself
- Age at diagnosis: 43
Re: My mini-allo transplant journey
I am having my one year follow-up visit this week at SCCA. Today they told me that they had no recommendations because my bone marrow showed no myeloma and my light chain ratio was 1.4.
I am in remission, completely devoid of graft versus host disease (GVHD), and feeling great. The chances of developing chronic GVHD at this point are only about 10%. I have taken no maintenance therapy and do not need to.
I am thrilled and hope the allogeneic option becomes available to more patients.
I am in remission, completely devoid of graft versus host disease (GVHD), and feeling great. The chances of developing chronic GVHD at this point are only about 10%. I have taken no maintenance therapy and do not need to.
I am thrilled and hope the allogeneic option becomes available to more patients.
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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
That is really wonderful news. I'm so happy to hear from you. I just completed a transplant consult at SCCA and have decided against the allo transplant, but your great outcome is fantastic.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: My mini-allo transplant journey
Hi CindyBrown,
It sounds like you are doing great. Way to go.
Could you give a little more details on the mini-allo transplant? I am into the 10th month of Revlimid, Velcade, and dexamethasone (RVD) treatments. Is it to late for a stem cell transplant, I wonder?
Have light chain / kappa. 5500 in July 2015 when treatment was begun, and now at 80.
So much to learn about multiple myeloma and it gets confusing to me.
Thanks,
WVjim
It sounds like you are doing great. Way to go.
Could you give a little more details on the mini-allo transplant? I am into the 10th month of Revlimid, Velcade, and dexamethasone (RVD) treatments. Is it to late for a stem cell transplant, I wonder?
Have light chain / kappa. 5500 in July 2015 when treatment was begun, and now at 80.
So much to learn about multiple myeloma and it gets confusing to me.
Thanks,
WVjim
Re: My mini-allo transplant journey
Hi Cindy,
Your post put the biggest smile on my face. You should be thrilled. You gave yourself a chance at the best possible outcome. You took the road less traveled. Hopefully the road ends at a place few myeloma patients get to - cured and with your former quality of life back. Sounds like you are pretty much there with respect to the QOL part. As time moves on, you will get more confident that you will remain in remission. As I said earlier in the thread, no one deserves a great outcome more than you do.
Congratulations!!!
Mark
Your post put the biggest smile on my face. You should be thrilled. You gave yourself a chance at the best possible outcome. You took the road less traveled. Hopefully the road ends at a place few myeloma patients get to - cured and with your former quality of life back. Sounds like you are pretty much there with respect to the QOL part. As time moves on, you will get more confident that you will remain in remission. As I said earlier in the thread, no one deserves a great outcome more than you do.
Congratulations!!!
Mark
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Mark11
Re: My mini-allo transplant journey
Thank you, Mark11. As you know, it wasn't easy going through it, but for me it seemed the best option. Today I am sure it was the best option and I hope and pray that my journey with myeloma is over.
Wvjim, thank you for your comments. It is up to you and your doctor as to when is the best time for transplant. My research indicated that you do not need to be completely disease free going into transplant. My light chain profile is very similar to yours. My doctors chose to change my chemo after 4-5 rounds of RVd to better tackle the light chains and also marrow burden. If you are not currently seeing a myeloma specialist, you should go see one, as they can better direct you than anyone. I know there are current studies looking at whether transplant provides better outcomes than the new drugs we have available. Best of luck.
Mark W, why did you decide against allo?
Wvjim, thank you for your comments. It is up to you and your doctor as to when is the best time for transplant. My research indicated that you do not need to be completely disease free going into transplant. My light chain profile is very similar to yours. My doctors chose to change my chemo after 4-5 rounds of RVd to better tackle the light chains and also marrow burden. If you are not currently seeing a myeloma specialist, you should go see one, as they can better direct you than anyone. I know there are current studies looking at whether transplant provides better outcomes than the new drugs we have available. Best of luck.
Mark W, why did you decide against allo?
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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
Fabulous news, Cindy!
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: My mini-allo transplant journey
Cindy:
Thank you very much for the update. I know you have been through a lot, and I am wishing you the best possible case! Good luck.
Thank you very much for the update. I know you have been through a lot, and I am wishing you the best possible case! Good luck.
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JPC - Name: JPC
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