Hi. I have a 60-year-old sister who was just diagnosed with multiple myeloma. She is still in the staging process, but from what I have read, I think she may be stage 3.
I believe her illness has progressed for some time without notice because she had other health issues. The first indication was anemia. This led to other treatments and tests. She had a kidney protein output of 2375! Her hemocrit was 7.9. Those are the highlights.
Now the complication -- up until this diagnosis, she was on the UNOS list waiting for a heart transplant. She was 1B. Now that is gone. And has become a complication to her treatment.
I understand that chemo is too harsh for her heart, so they are considering a pill form. She does have a pacemaker / IED implant. And she is diabetic.
What I guess I am asking is twofold: Has anyone else been in this situation and does anyone know if stem cell transplantation is possible in this situation?
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Re: Sister newly diagnosed, was waiting for heart transplant
Moko-
Wow, what a tough situation for your sister and your family to face. I really can't answer any of your questions.
Is your sister being seen by a myeloma specialist? If not, please let us know, and we can make some suggestions as to how she might find one.
With your sister's medical complications, she will need a village of specialists to figure out what is the best course of treatment for her. I hope that a nephrologist is part of the team at this point for her kidney issues. Make sure that whoever your sister adds to her team that they understand all of her medical issues and that s/he will coordinate and confer with all of the other specialists on her team.
Much love to your sister as she begins this latest detour in her life's journey. Love and strength to all of you.
Nancy in Phila
Wow, what a tough situation for your sister and your family to face. I really can't answer any of your questions.
Is your sister being seen by a myeloma specialist? If not, please let us know, and we can make some suggestions as to how she might find one.
With your sister's medical complications, she will need a village of specialists to figure out what is the best course of treatment for her. I hope that a nephrologist is part of the team at this point for her kidney issues. Make sure that whoever your sister adds to her team that they understand all of her medical issues and that s/he will coordinate and confer with all of the other specialists on her team.
Much love to your sister as she begins this latest detour in her life's journey. Love and strength to all of you.
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: Sister newly diagnosed, was waiting for heart transplant
Actually, her team consists of a hematologist/oncologist, an internist, and a cardiologist. I didn't know that myeloma specialists existed. We are near Chicago, so I am trying to get her to someone with more experience there. Thanks for the suggestions.
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Moko
Re: Sister newly diagnosed, was waiting for heart transplant
Moko-
There are a number of myeloma specialists in the Chicago area. They are usually located at large research hospitals. They are more than worth their weight in gold in being able to adjust treatment to accommodate other medical issues, in knowing what is the most effective treatment for certain forms of myeloma, and knowing what clinical trials are available. Most of them are more than willing to coordinate a person's care with a local hematologist/oncologist so that travel can be minimized.
All the best,
Nancy in Phila
There are a number of myeloma specialists in the Chicago area. They are usually located at large research hospitals. They are more than worth their weight in gold in being able to adjust treatment to accommodate other medical issues, in knowing what is the most effective treatment for certain forms of myeloma, and knowing what clinical trials are available. Most of them are more than willing to coordinate a person's care with a local hematologist/oncologist so that travel can be minimized.
All the best,
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Sister newly diagnosed, was waiting for heart transplant
Hello Moko,
The Beacon maintains a comprehensive list of cancer centers with myeloma specialists. It is organized by state and you can find it here:
https://myelomabeacon.org/treatment-centers/
In the Chicago area, Northwestern University and the University of Chicago are major research-oriented cancer centers with myeloma specialists. Two at Northwestern that come to mind are Dr. Jayesh Mehta and Dr. Seema Singhal. At the University of Chicago, there is Dr. Andrzej Jakubowiak.
Each of the two centers also is likely to have several other physicians on staff with an emphasis on multiple myeloma.
In addition, the three specialists we just mentioned are the only ones from Illinois who are members of the International Myeloma Working Group.
There certainly are other myeloma specialists in the area, and perhaps others here in the forum can pass along recommenations.
As already was mentioned in earlier postings, it is very valuable for someone with multiple myeloma to be under the care of a physician who specializes in the disease. In addition, specialists at major cancer centers have direct access to clinical trials, which can be valuable options.
All the best to your sister, and please keep us posted on how she is doing and any additional questions you may have.
The Beacon maintains a comprehensive list of cancer centers with myeloma specialists. It is organized by state and you can find it here:
https://myelomabeacon.org/treatment-centers/
In the Chicago area, Northwestern University and the University of Chicago are major research-oriented cancer centers with myeloma specialists. Two at Northwestern that come to mind are Dr. Jayesh Mehta and Dr. Seema Singhal. At the University of Chicago, there is Dr. Andrzej Jakubowiak.
Each of the two centers also is likely to have several other physicians on staff with an emphasis on multiple myeloma.
In addition, the three specialists we just mentioned are the only ones from Illinois who are members of the International Myeloma Working Group.
There certainly are other myeloma specialists in the area, and perhaps others here in the forum can pass along recommenations.
As already was mentioned in earlier postings, it is very valuable for someone with multiple myeloma to be under the care of a physician who specializes in the disease. In addition, specialists at major cancer centers have direct access to clinical trials, which can be valuable options.
All the best to your sister, and please keep us posted on how she is doing and any additional questions you may have.
Re: Sister newly diagnosed, was waiting for heart transplant
Hi. How did things go with your sister?
My 65 year old father has been in hospital for almost 3 weeks, a status 1a for a heart transplant, and was just diagnosed today with myeloma. I am just searching for anything I can get my hands on to educate myself.
Right now, they are going to send him home on IV meds to strengthen his heart and start chemotherapy with a hematologist in a pill form and also weekly subcutaneous injections.
I'll let you know when I get more info.
My 65 year old father has been in hospital for almost 3 weeks, a status 1a for a heart transplant, and was just diagnosed today with myeloma. I am just searching for anything I can get my hands on to educate myself.
Right now, they are going to send him home on IV meds to strengthen his heart and start chemotherapy with a hematologist in a pill form and also weekly subcutaneous injections.
I'll let you know when I get more info.
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Mrs Gary Riley
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