Hi Everyone!
About 3 months ago my mom was diagnosed with smoldering myeloma and the oncoligist told us that he would see her every three months so he could keep a close eye on it. I feel like the doctor minimized the seriousness of this disease.
Mom went in for her 3 month check up and when the results came in we learned that the myeloma is now active. The oncologist has referred us to the Karmanos Cancer Center where we will meet with moms "cancer" doctor.
The appointment is not until Nov 4 and I am going crazy doing research to figure out what is going on. I am completly overwhelmend! During the next appointment. we will discuss with the doctor the exact course of treatment. I have no idea what stage she is in or how serious this disease really is. The oncologist told us she would start on chemo and eventually possibly a stem cell transplant.
I am so nervous everyday just wondering "will this be moms last halloween with her grandkids" My mom has high blood pressure that is treated with meds, is diabetic, has asthma, very overweight and her kidneys are not functioning at 100%.
My mom tells me not to worry, that the myeloma is not progressing that quickly, but just 3 months ago it was smoldering so how can is not be progressing fast?
Does anyone have any idea how bad this disease is?
Is my mom going to beat this?
As her daughter I will be there to support her, but I am totally freaking out!
Forums
5 posts
• Page 1 of 1
Re: Advice on multiple myeloma
Hello,
I can fully understand what you are going through. I was diagnosed this August with multiple myeloma. In September, I was more thoroughly diagnosed with smoldering myeloma. Please do not panic at this point. Go to the website of the International Myeloma Foundation which has a hotline which you can call. They are experienced and excellent in dealing with newly diagnosed people. Call now!!! They helped me a lot. The site itself has vast amounts of information-all free-to help you. Also, check out the site for the Multiple Myeloma Research Fund which also will help you. The main criteria for threatment are summed up by the acronym CRAB---Calcium (high), Renal (high creatinine or kidney failure), A (anemia--low hemoglobin) and Bone involvement (lytic lesions). I don't know what your mom's specific situation is but you mentioned kidney problems. The best advice I can give you is to call the hotline, educate yourself as much as you can about multiple myeloma and know that there are many, many treatments available for your mother. Good luck.
I can fully understand what you are going through. I was diagnosed this August with multiple myeloma. In September, I was more thoroughly diagnosed with smoldering myeloma. Please do not panic at this point. Go to the website of the International Myeloma Foundation which has a hotline which you can call. They are experienced and excellent in dealing with newly diagnosed people. Call now!!! They helped me a lot. The site itself has vast amounts of information-all free-to help you. Also, check out the site for the Multiple Myeloma Research Fund which also will help you. The main criteria for threatment are summed up by the acronym CRAB---Calcium (high), Renal (high creatinine or kidney failure), A (anemia--low hemoglobin) and Bone involvement (lytic lesions). I don't know what your mom's specific situation is but you mentioned kidney problems. The best advice I can give you is to call the hotline, educate yourself as much as you can about multiple myeloma and know that there are many, many treatments available for your mother. Good luck.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Advice on multiple myeloma
Terry,
Thanks you so much for your advice. I have been keeping most of my fears to myself. I will for sure check out the site and call the hotline.
Michelle
Thanks you so much for your advice. I have been keeping most of my fears to myself. I will for sure check out the site and call the hotline.
Michelle
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Donna's Daughter
Re: Advice on multiple myeloma
Michelle, I'm so sorry about your mom. I know how terrorizing it is to learn that someone you love has Multiple Myeloma.
In general, Multiple Myeloma is slow moving, so you should have some time to figure some of this out. Since your doc mentioned that your mom may be a candidate for a stem cell transplant, I'd also suggest setting up an appointment with a transplant doctor to discuss as this could affect the drugs they put her on.
Please know that what you are going through right now is the worst part. The uncerainty of not knowing what is going on is overwhelming. Once your mom decides on a treatment plan and gets into the swing of going to the infusion center and taking her meds, it starts to feel more routine.
...and although no one answered your question, I don't think this is your mom's last Halloween! Although there is no cure for multiple myeloma, they are very close to being able to treat it like a chronic disease. I expect she has many more Halloweens and Christmases ahead of her! Think positive.
Lyn
In general, Multiple Myeloma is slow moving, so you should have some time to figure some of this out. Since your doc mentioned that your mom may be a candidate for a stem cell transplant, I'd also suggest setting up an appointment with a transplant doctor to discuss as this could affect the drugs they put her on.
Please know that what you are going through right now is the worst part. The uncerainty of not knowing what is going on is overwhelming. Once your mom decides on a treatment plan and gets into the swing of going to the infusion center and taking her meds, it starts to feel more routine.
...and although no one answered your question, I don't think this is your mom's last Halloween! Although there is no cure for multiple myeloma, they are very close to being able to treat it like a chronic disease. I expect she has many more Halloweens and Christmases ahead of her! Think positive.
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: Advice on multiple myeloma
I think the the strengths of this forum (and forums like this) is that they facilitate conversation and counselling between experienced care-givers/patients and those who are just now encountering the barage of new and overwhelming information. Importantly, this is coming from eachother and not from a doctor.
That being said, I think that it is important to note-as the last post stated- that although myeloma is an incurable malignancy, there is great hope and time that can be gained by appropriate diagnosis, treatment, and supportive care. So, depending on a number of factors your mother should have many more Holidays.
Lastly, with rare diseases like myeloma, I recommend seeking out a center of excellence where they have physicians who specialize in myeloma (and generally only myeloma and like diseases) for a second opinion regarding therapy and education on the disesae itself-if possible. To this end, one can maximize the quality and quantity of life for your mother.
That being said, I think that it is important to note-as the last post stated- that although myeloma is an incurable malignancy, there is great hope and time that can be gained by appropriate diagnosis, treatment, and supportive care. So, depending on a number of factors your mother should have many more Holidays.
Lastly, with rare diseases like myeloma, I recommend seeking out a center of excellence where they have physicians who specialize in myeloma (and generally only myeloma and like diseases) for a second opinion regarding therapy and education on the disesae itself-if possible. To this end, one can maximize the quality and quantity of life for your mother.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
5 posts
• Page 1 of 1