I just had a follow-up to restore my immunizations at my cancer center and was told that the BMT clinic no longer would provide me support. They took care of me from stem cell harvesting to 100 days post-transplant, and now I am returned to my PCM and oncologist.
Moving forward, do I need to seek out a multiple myeloma specialist, or trust my oncologist who is connected to the cancer center as a satellite office?
I thought when my oncologist referred me to the cancer center that I would stay with the multiple myeloma specialist who oversaw the transplant. I will return for year- to-year checkups, but now wonder why they have said they're done with me?
I'm a little confused and would appreciate thoughts.
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: Post-ASCT, should I go to a multiple myeloma specialist?
Hi Kully,
EJ has had the same progression of doctors, and I've always assumed it was fairly normal because SCTs are such a specialty. It will be interesting to hear what others have to say.
Anyway, EJ went back to his local onc after his SCT for monitoring. He's not been on any treatment for over three years now. As he relapses we will go for a second opinion.
Hope that helps,
Lyn
EJ has had the same progression of doctors, and I've always assumed it was fairly normal because SCTs are such a specialty. It will be interesting to hear what others have to say.
Anyway, EJ went back to his local onc after his SCT for monitoring. He's not been on any treatment for over three years now. As he relapses we will go for a second opinion.
Hope that helps,
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Post-ASCT, should I go to a multiple myeloma specialist?
Thanks Lyn! I hope others can provide a little of their own post-transplant experiences.
My biggest concerns are due to my significant bone damage. I'm trying to get my strength back and fear that focusing on the one issue may allow multiple myeloma to creep back if I don't have a specialist oversight.
My best to EJ!
Kully
My biggest concerns are due to my significant bone damage. I'm trying to get my strength back and fear that focusing on the one issue may allow multiple myeloma to creep back if I don't have a specialist oversight.
My best to EJ!
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: Post-ASCT, should I go to a multiple myeloma specialist?
I had my SCT done in November of 2013. Thus far I have been back to the clinic 3 times -- at 30 days, 100 days, and 180 days. I will have at least one more trip back for the 1-year anniversary. After that, I really don't know when or if I will be going back there for more follow ups.
My SCT was done at the University of Michigan.
My SCT was done at the University of Michigan.
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Blackbird - Name: Rick Crow
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb, 2013
- Age at diagnosis: 53
Re: Post-ASCT, should I go to a multiple myeloma specialist?
I had my SCT in February 2014. I have been going back to see my transplant doctor every 3 months since my transplant. My transplant doctor also happens to be very knowledgeable with multiple myeloma and the current and new treatment options, etc. I would consider him a multiple myeloma specialist. I also see my oncologist every 3 months.
In February 2015, I will receive my post transplant immunizations with the transplant center. I asked my transplant doctor whether, after the first year, I could see him at least once a year to get a 2nd opinion as to where my multiple myeloma is presently and where it might be headed. He said that would be fine.
He also told me that he would like to do a PET scan and bone marrow biopsy at least once a year. I'm not sure if that's overkill, but I'd rather keep on top of things and not miss something. If nothing else, I will have 2 doctors to get opinions from and monitor my status.
In February 2015, I will receive my post transplant immunizations with the transplant center. I asked my transplant doctor whether, after the first year, I could see him at least once a year to get a 2nd opinion as to where my multiple myeloma is presently and where it might be headed. He said that would be fine.
He also told me that he would like to do a PET scan and bone marrow biopsy at least once a year. I'm not sure if that's overkill, but I'd rather keep on top of things and not miss something. If nothing else, I will have 2 doctors to get opinions from and monitor my status.
Last edited by DallasGG on Wed Sep 10, 2014 5:19 pm, edited 2 times in total.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Post-ASCT, should I go to a multiple myeloma specialist?
Since my oncologist is a myeloma specialist and the transplant coordinator, I can't answer your question. But, I think that it would be a good idea to have an multiple myeloma specialist as a consultant to your local oncologist. Since you do have bone damage, I feel it is important to have a specialist in your team of doctors.
Nancy in Phila
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Post-ASCT, should I go to a multiple myeloma specialist?
My husband underwent SCT in April 2012. His follow-up was very similar to what you are describing. After 100 days, we went back to his original oncologist with follow-up by the BMT unit at 6 months and 1 year.
I am an RN and have studied extensively options of treatment. From all the studies I have read, you have a better chance for longer survival if you are managed by a center of excellence for myeloma. The Myeloma Beacon has a list of myeloma treatment centers on their resource page.
Since myeloma is so rare, access to better treatment protocols, clinical trials, and current medical research that these centers excel in is key for a longer survival rate.
I am an RN and have studied extensively options of treatment. From all the studies I have read, you have a better chance for longer survival if you are managed by a center of excellence for myeloma. The Myeloma Beacon has a list of myeloma treatment centers on their resource page.
Since myeloma is so rare, access to better treatment protocols, clinical trials, and current medical research that these centers excel in is key for a longer survival rate.
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Mizzoumo - Name: Carolyn
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: 2012
- Age at diagnosis: 68
Re: Post-ASCT, should I go to a multiple myeloma specialist?
It's been almost two years for me since SCT. I go to the specialist every six months to review my treatment plan. I think it's important to keep up with the specialist.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Post-ASCT, should I go to a multiple myeloma specialist?
I had my ASCT in Aug of 2010 at the University of Pennsylvania and saw my myeloma specialist once a month for a year afterward and still see him every three months. My local oncologist and he are in constant communication, which makes me feel good.
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acar637
Re: Post-ASCT, should I go to a multiple myeloma specialist?
Based on reading about the experiences of other, and from my own experience:
Greetings
- Everything around your multiple myeloma should be planned by a multiple myeloma specialist who is really top notch and informed about the latest most up to date research.
- If she/he is not your primary contact from month to month, then the second line must also be specialized in multiple myeloma.
Greetings
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
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