AC,
Hope things are going well. My husband's 90 day test showed a stringent complete response (sCR). All labs normal, no disease in bone marrow. However, our myeloma specialist suggested he have 3 rounds of consolidation treatment to give the myeloma an extra kick in the butt while it is down. lol He said studies suggest that younger, otherwise healthy people with sCR after a stem cell transplant got a much longer remission-free period with this extra kick.
We are going to do this since my husband tolerated his induction treatment very well. Then, since he has the p14 gene deletion, he will be on every other week Velcade for maintenance after the consolidation.
Forums
-
dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: AC's stem cell transplant in South Florida
Just thinking about you and hope all is going well.
-
dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: AC's stem cell transplant in South Florida
In lieu of having knowledge or experience that would be helpful / informative, I join dogmom in hoping things are going well, or in process of getting there!
-
moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
Re: AC's stem cell transplant in South Florida
These last couple of months have been trying as I am on my maintenance therapy with Velcade, dex, and Revlimid. My rash finally after four months went away in the middle of September.
It's been difficult for me to read anything myeloma for the past month because I learned my brother might also have myeloma. He will be getting his kappa light numbers back tomorrow, but all signs point to myeloma. I thought from everything l read that myeloma was not hereditary, but it appears that my brother and I will probably be diagnosed with myeloma in the same year. My brother was there for me during my stem cell transplant when I received my melphalan, and I could not have made it through the stem cell transplant without him. I do not have any high-risk chromosomes and do not know if the high risk chromosomes have a higher potential of being passed down.
I've had an issue with my kappa free light chain level during maintenance that I discuss in a new forum thread I've started, "Kappa free light chain level going up & down during RVD maintenance".
AC
It's been difficult for me to read anything myeloma for the past month because I learned my brother might also have myeloma. He will be getting his kappa light numbers back tomorrow, but all signs point to myeloma. I thought from everything l read that myeloma was not hereditary, but it appears that my brother and I will probably be diagnosed with myeloma in the same year. My brother was there for me during my stem cell transplant when I received my melphalan, and I could not have made it through the stem cell transplant without him. I do not have any high-risk chromosomes and do not know if the high risk chromosomes have a higher potential of being passed down.
I've had an issue with my kappa free light chain level during maintenance that I discuss in a new forum thread I've started, "Kappa free light chain level going up & down during RVD maintenance".
AC
-
Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: AC's stem cell transplant in South Florida
I've got my fingers crossed that your brother has something more benign than multiple myeloma, AC. Give him our best.
Re: AC's stem cell transplant in South Florida
I am sorry to hear this, AC. I do hope all turns out well for him.
-
dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: AC's stem cell transplant in South Florida
AC,
So sorry to hear this news about your brother.
My father had multiple myeloma back in the 1960s. I can't believe that in some cases there is not some hereditary link, although some doctors think is it rather an environmental thing shared by a family. They don't really know.
I hope your brother does not have myeloma, of course!
Keep us posted.
Best,
Ellen Harris
So sorry to hear this news about your brother.
My father had multiple myeloma back in the 1960s. I can't believe that in some cases there is not some hereditary link, although some doctors think is it rather an environmental thing shared by a family. They don't really know.
I hope your brother does not have myeloma, of course!
Keep us posted.
Best,
Ellen Harris
Re: AC's stem cell transplant in South Florida
Hi AC,
Just want to add my voice. I sure hope your brother does not have multiple myeloma. That would just be too cruel for both of you to have it, and especially for both of you to be diagnosed in the same year.
Also, I'm wishing the best for you with your kappa FLC issue.
Hang in there!
Mike
Just want to add my voice. I sure hope your brother does not have multiple myeloma. That would just be too cruel for both of you to have it, and especially for both of you to be diagnosed in the same year.
Also, I'm wishing the best for you with your kappa FLC issue.
Hang in there!
Mike
-
mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: AC's stem cell transplant in South Florida
Hope you and your brother are doing well.
-
dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: AC's stem cell transplant in South Florida
Hi, AC,
I am wondering how your brother is doing? I do hope he does not have myeloma, but in any case, I wish you both strength and sending wishes of good health.
I am wondering how your brother is doing? I do hope he does not have myeloma, but in any case, I wish you both strength and sending wishes of good health.
-
Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Return to Treatments & Side Effects