Hello. My husband has type 1 diabetes, and has regular blood tests with his doctor to see how he is doing. He had one last week, and on Christmas Eve morning we got a call from his doctor's office saying he should go to the ER because his blood showed elevated calcium levels.
Well, fast forward three days and many tests later, and the latest word is that his doctor is '75% sure' that he has multiple myeloma, and that he wants my husband to have a bone marrow biopsy done at the earliest possible time (which is two days from today - I guess this procedure never happens on a Sunday, grr).
Having had some experience with a loved one diagnosed with cancer in the past, I am trying to prepare for a positive diagnosis by educating myself as much as I can about the disease, and also doctors who specialize in multiple myeloma who live in or around the Orlando area.
Does anyone have any recommendations?
I know that the Florida Hospital in Orlando has a new multiple myeloma center. I want to have opinions from at least 3 doctors before we agree to any kind of treatment.
Also, does anyone know about how the various treatments for multiple myeloma affect male fertility?
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Re: Multiple myeloma specialists - Orlando, Florida
Sorry to hear that your husband may be joining this "exclusive" club, but you've come to a great resource for information and support.
There is a list of major myeloma treatment centers in the U.S. that you can find here:
https://myelomabeacon.org/treatment-centers/
There are three included in the list from Florida: Moffitt, Mayo-Jacksonville, and the University of Miama (Sylvester Cancer Center). Of those three, i would say that Moffitt and Mayo-Jacksonville probably have the largest number myeloma specialists.
If you're husband's calcium levels are elevated to the point that his doctor sent him to the ER, and if myeloma is the source of the elevated calcium levels, then I personally would not recommend waiting to decide on immediate treatment until you've met with several specialists. Waiting in your husband's current condition could result in further damage to his body, including his kidneys and bones. That damage not only would lower his quality of life in the future, but could affect the treatments he will be able to receive and his overall prognosis.
Good luck!
There is a list of major myeloma treatment centers in the U.S. that you can find here:
https://myelomabeacon.org/treatment-centers/
There are three included in the list from Florida: Moffitt, Mayo-Jacksonville, and the University of Miama (Sylvester Cancer Center). Of those three, i would say that Moffitt and Mayo-Jacksonville probably have the largest number myeloma specialists.
If you're husband's calcium levels are elevated to the point that his doctor sent him to the ER, and if myeloma is the source of the elevated calcium levels, then I personally would not recommend waiting to decide on immediate treatment until you've met with several specialists. Waiting in your husband's current condition could result in further damage to his body, including his kidneys and bones. That damage not only would lower his quality of life in the future, but could affect the treatments he will be able to receive and his overall prognosis.
Good luck!
-
Jonah
Re: Multiple myeloma specialists - Orlando, Florida
We live in Fort Myers, Florida. My husband got the 75% multiple myeloma diagnosis from his orthopedic specialist. The OS said we needed to have tests and better not to do it in the hospital as that is where everyone gets sick. It was taking forever to get those appointments. Long story short, husband admitted to hospital where a hematologist / oncologist saw him and diagnosed him. My husband had high calcium but no kidney damage and they were able to get his calcium levels down. My husband had a lot of bone damage from the multiple myeloma.
Hematologist / oncologist recommended standard of care, which is Revlimid (pill), Velcade (shot), and dexamethasone (pill) (RVD). After visiting a multiple myeloma support group, I also determined we must see a specialist - which everyone agrees. We got appointment at Moffitt and did get same recommendation for care.
Your local hematologist / oncologist will probably tell you it is not necessary to see a specialist, but everyone who has multiple myeloma says to see a specialist.
Things to know on your journey at this point.
Key things in blood work are something to know are his IgA, IgG, IgM counts. AND his M-spike.
What type of myeloma does he have? IgG kappa.
My husband was diagnosed May 1, 2015. He did 8 cycles of RVD and had a stem cell transplant, which also may be part of standard of care. My husband is 48, so they often recommend stem cell transplant for "younger" patients.
My husband is now co-managed by the multiple myeloma specialist at Moffitt and our local hematologist / oncologist. They correspond via email to plan out his care.
This might be your scenario.
Hematologist / oncologist recommended standard of care, which is Revlimid (pill), Velcade (shot), and dexamethasone (pill) (RVD). After visiting a multiple myeloma support group, I also determined we must see a specialist - which everyone agrees. We got appointment at Moffitt and did get same recommendation for care.
Your local hematologist / oncologist will probably tell you it is not necessary to see a specialist, but everyone who has multiple myeloma says to see a specialist.
Things to know on your journey at this point.
Key things in blood work are something to know are his IgA, IgG, IgM counts. AND his M-spike.
What type of myeloma does he have? IgG kappa.
My husband was diagnosed May 1, 2015. He did 8 cycles of RVD and had a stem cell transplant, which also may be part of standard of care. My husband is 48, so they often recommend stem cell transplant for "younger" patients.
My husband is now co-managed by the multiple myeloma specialist at Moffitt and our local hematologist / oncologist. They correspond via email to plan out his care.
This might be your scenario.
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