Hi,
I am a caregiver for my husband. He was diagnosed in 1987 (22 years old) with multiple myeloma and had a stem cell transplant at M.D. Anderson in Texas by Dr. Jagannath and Dr. Barlogie and has been in remission since 1988. We live in Florida and have been traveling to Little Rock, Arkansas, where Dr. Barlogie moved to. We have been doing his annual test here in Florida instead of seeing Dr. Barlogie because of insurance.
Now his tests are showing that his cancer is back. His doctors has been in touch with Dr. Barlogie and of course he wants him to come to New York, where he is at now (Mt. Sinai) to have a stem cell transplant.
So here we are with a decision do we go back to Little Rock, Arkansas, or to New York with Dr. Barlogie. Or do we take the chance and stay here and do the transplant at Moffitt in Tampa, Florida? Of course, the best choice would be Little Rock or New York, but I do work and he wouldn't have a caregiver.
I also noticed that forum member Joe had a transplant in Alabama. I would be interested to know where exactly that was.
Forums
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Cindyo - Name: Cindyo
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: 1987
- Age at diagnosis: 22
Re: Where should we go?
Sorry I can't help on your question.
But a 29-year remission. That must be a record. Are they even sure it is a recurrence of the original condition?
But a 29-year remission. That must be a record. Are they even sure it is a recurrence of the original condition?
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Davidg - Name: David
- When were you/they diagnosed?: Feb 2015 - AL Amyloidosis
- Age at diagnosis: 53
Re: Where should we go?
The hospital in Alabama is UAB in Birmingham, Ala. They are great! From the minute you walk in, you and your husband are taken care of. You don't have to follow behind them to make sure everything has been approved, it is taken care of. My husband stayed in hospital for 10 days, then he was sent to Hope Lodge for 4 weeks. Our expense ZERO. Hope Lodge provided transportation back and forth to the hospital for labs that he needed every other day. UAB, the doctors and Hope Lodge are wonderful.
Re: Where should we go?
Yes, it is a reoccurence. It's about 5% plasma cells right now. Don't know whether to opt for a stem cell transplant or Revlimid, Velcade and dex for I am not sure he can get through another stem cell transplant. They are not sure if it's the same type of myeloma since there was not a gene array study.
Has anyone gone to Mt. Sinai? If so, any information will be greatly appreciated. They want us to make a decision right away and we feel rushed.
Has anyone gone to Mt. Sinai? If so, any information will be greatly appreciated. They want us to make a decision right away and we feel rushed.
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Cindyo - Name: Cindyo
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: 1987
- Age at diagnosis: 22
Re: Where should we go?
The myeloma group at Moffitt is large and well respected. One of the myeloma doctors from the group posts here in the forum sometimes (Dr. Shain). I don't see how your husband could go wrong going there.
Maybe it's just me, but I also get suspicious when anyone tries to pressure me into a decision about anything. It's the sort of tactic car salespeople use. "I've got a great deal for you, but it's only for this afternoon."
The Arkansas group obviously is huge and very talented. There is also Dr. Hoffman at Miami and, as Mary mentioned, Dr. Costa at Alabama-Birmingham. There's also Mayo up in Jacksonville.
Maybe it's just me, but I also get suspicious when anyone tries to pressure me into a decision about anything. It's the sort of tactic car salespeople use. "I've got a great deal for you, but it's only for this afternoon."
The Arkansas group obviously is huge and very talented. There is also Dr. Hoffman at Miami and, as Mary mentioned, Dr. Costa at Alabama-Birmingham. There's also Mayo up in Jacksonville.
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Jonah
Re: Where should we go?
I can't see why they are rushing you. 5% is barely at the MGUS level. Does he have any physical symptoms?
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Davidg - Name: David
- When were you/they diagnosed?: Feb 2015 - AL Amyloidosis
- Age at diagnosis: 53
Re: Where should we go?
I'll briefly chime in to agree with David. At 5% plasma cells, unless there is something very unusual, there should be time to evaluate and get a couple of different inputs on where and how to treat. What and how bad are the CRAB symptoms??
Also, FYI, Mt. Sinai is also known as one of the leading multiple myeloma centers. I have heard that Dr. Jagganath has been very pro-transplant oriented in terms of treatment options (for instance, more likely to recommend a tandem auto, for example).
Good luck to you.
Also, FYI, Mt. Sinai is also known as one of the leading multiple myeloma centers. I have heard that Dr. Jagganath has been very pro-transplant oriented in terms of treatment options (for instance, more likely to recommend a tandem auto, for example).
Good luck to you.
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JPC - Name: JPC
Re: Where should we go?
Thank you to everyone for your input.
My husband physically feels fine. If it wasn't for the serum test to show his kappa number doubled. He has been in the normal range for years. His kappa lambda ratio was high. His shows up in the urine. They did a 24-hour urine and his kappa was normal but the kappa/lambda ratio was high.
At first his oncologist said I wouldn't need to treat it right away. Then after he discussed it more with a myeloma specialist, they said since he is only 51 years old and in good health and with only 5% plasma cells, now is a good time treat him. They said before it gets worse where they would have to give him meds to bring the plasma cells down this is a good time. He might/should have a stem cell transplant now. But I am wondering if he can get through another one again.
The first one was rough and he didn't tolerate the melphalan very well. He is also allergic to nausea meds. But that was in July 1988 at M.D. Anderson under Dr. Barlogie and Dr. Jagannath. (And he was only 22 years old at the time).
I am making arrangements for him to see a myeloma specialist. Waiting for a call to set up an appointment. I will keep you updated.
My husband physically feels fine. If it wasn't for the serum test to show his kappa number doubled. He has been in the normal range for years. His kappa lambda ratio was high. His shows up in the urine. They did a 24-hour urine and his kappa was normal but the kappa/lambda ratio was high.
At first his oncologist said I wouldn't need to treat it right away. Then after he discussed it more with a myeloma specialist, they said since he is only 51 years old and in good health and with only 5% plasma cells, now is a good time treat him. They said before it gets worse where they would have to give him meds to bring the plasma cells down this is a good time. He might/should have a stem cell transplant now. But I am wondering if he can get through another one again.
The first one was rough and he didn't tolerate the melphalan very well. He is also allergic to nausea meds. But that was in July 1988 at M.D. Anderson under Dr. Barlogie and Dr. Jagannath. (And he was only 22 years old at the time).
I am making arrangements for him to see a myeloma specialist. Waiting for a call to set up an appointment. I will keep you updated.
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Cindyo - Name: Cindyo
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: 1987
- Age at diagnosis: 22
Re: Where should we go?
Why not start off with a Velcade-based treatment and see what response he gets? If he gets an minimal residual disease negative (MRD-) complete response (CR), which is quite possible given his very low plasma cell count and that he is effectively treatment naive, then there would be a case for stopping there.
Velcade + dex for a fit man in his early 50s should be a very manageable regime. I had it last year with 6% bone marrow plasma cell percentage.
Velcade + dex for a fit man in his early 50s should be a very manageable regime. I had it last year with 6% bone marrow plasma cell percentage.
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Davidg - Name: David
- When were you/they diagnosed?: Feb 2015 - AL Amyloidosis
- Age at diagnosis: 53
Re: Where should we go?
Cindy -
It might also be worthwhile to talk to a doctor or two about any differences between the stem cell transplant procedure in the '80's vs. what is done now. For instance, there may be anti-nausea meds available now that weren't around then. If he can describe the issues he had last time around to the transplant, team then perhaps they can recommend some options that will make it less difficult for him.
I can somewhat understand why the doctors believe another transplant would be a good idea. I've been told that if your first one keeps you in remission for more than a year or two, then there's a good chance that a second one will also be effective. Your husband obviously had an amazing response to his first one. Still, I can understand why you'd be leery of another one. Another SCT is just one of various options out there now.
It might also be worthwhile to talk to a doctor or two about any differences between the stem cell transplant procedure in the '80's vs. what is done now. For instance, there may be anti-nausea meds available now that weren't around then. If he can describe the issues he had last time around to the transplant, team then perhaps they can recommend some options that will make it less difficult for him.
I can somewhat understand why the doctors believe another transplant would be a good idea. I've been told that if your first one keeps you in remission for more than a year or two, then there's a good chance that a second one will also be effective. Your husband obviously had an amazing response to his first one. Still, I can understand why you'd be leery of another one. Another SCT is just one of various options out there now.
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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
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