Hey guys.
My name is Kay. I'm a 22 year old college student and I just found out that my dad has multiple myeloma. He's a 53 year old African-American man and from what I've read it's really common for older AA men to develop the disease.
I am horrified. I've never dealt with cancer. To my knowledge, my dad has never had more than a cold before this year. He went into the hospital very lethargic and unable to walk. My mom thought he'd had a stroke. Believe it or not, his calcium levels were at 18.2 and his sodium levels had bottomed out completely. His kidneys were losing function, but all of that is much better now (a week later). However, we are still faced with the reason for all of that: multiple myeloma.
I came here for support and for answers because this is all just over my head. I have no idea what to do. I have no idea what stage he's in. I do know that the doctor said that 72 to 80% of the cells are cancerous so I don't know if that gives us good chances. Please give me feedback or your stories. I would love to hear from you.
Thank you,
Kay.
Forums
5 posts
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Re: Father just diagnosed with myeloma - what should I do?
Kay, thanks for supporting your father during this challenge in both your lives.
You have started out well by seeking out this site, as it has many members well versed in this disease.
First, find a multiple myeloma specialist. This disease is truly a challenge and expert medical opinion is paramount.
I'll let others add their thoughts but my personal experience is I was stage III, with 95% plasma involvement. I'm doing well after a 18 month journey so stay positive for your Father and if you have questions, asked away!
Hope this helped.
Kully
You have started out well by seeking out this site, as it has many members well versed in this disease.
First, find a multiple myeloma specialist. This disease is truly a challenge and expert medical opinion is paramount.
I'll let others add their thoughts but my personal experience is I was stage III, with 95% plasma involvement. I'm doing well after a 18 month journey so stay positive for your Father and if you have questions, asked away!
Hope this helped.
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: Father just diagnosed with myeloma - what should I do?
Kay,
I am so sorry your father is so ill. You have certainly come to the right place for information and support. This is an incredible forum which receives feedback from physicians specializing in multiple myeloma.
You and your family will probably be bombarded with lots of information from the physicians and clinical staff. Write everything down or better yet, request medical documents and lab results to be printed out. It gets too confusing otherwise.
Your quote of the percentage of myeloma requires clarification. Do you know if this was the result of a bone marrow biopsy? Have they done blood tests on him and checked for what they call the paraprotein or monoclonal protein or m-spike? Have they done a body scan to check the status of his bones? Does he have any bone lesions?
Much of this will give us a better idea of your father's disease state. Also, you will hear this often, it cannot be stressed enough how important it is to be seen by myeloma specialists. If you need help finding someone, please let us know what city your dad is close to and we can point you in the right direction.
Lastly, as a college aged daughter, I know it must be so hard for you to suddenly see your strong, healthy father become so ill. Stay strong yourself. Learn as much as you can so you can be supportive of your parents. While multiple myeloma is a serious cancer, there have been many advances in treatment that have changed outcomes for many multiple myeloma patients.
Keep checking in here so we can support you!
I am so sorry your father is so ill. You have certainly come to the right place for information and support. This is an incredible forum which receives feedback from physicians specializing in multiple myeloma.
You and your family will probably be bombarded with lots of information from the physicians and clinical staff. Write everything down or better yet, request medical documents and lab results to be printed out. It gets too confusing otherwise.
Your quote of the percentage of myeloma requires clarification. Do you know if this was the result of a bone marrow biopsy? Have they done blood tests on him and checked for what they call the paraprotein or monoclonal protein or m-spike? Have they done a body scan to check the status of his bones? Does he have any bone lesions?
Much of this will give us a better idea of your father's disease state. Also, you will hear this often, it cannot be stressed enough how important it is to be seen by myeloma specialists. If you need help finding someone, please let us know what city your dad is close to and we can point you in the right direction.
Lastly, as a college aged daughter, I know it must be so hard for you to suddenly see your strong, healthy father become so ill. Stay strong yourself. Learn as much as you can so you can be supportive of your parents. While multiple myeloma is a serious cancer, there have been many advances in treatment that have changed outcomes for many multiple myeloma patients.
Keep checking in here so we can support you!
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Father just diagnosed with myeloma - what should I do?
Yes, the percentages came from a bone marrow biopsy. They've taken so much blood from him so I'm sure they've tested him for that, but I do not know the results.
He doesn't have any lesions or fractures to my knowledge, just swollen lymph nodes in his inner thigh and on his left side.
We are in the north Mississippi area. I am not certain that our oncologist specializes in multiple myeloma, but now I'm on a mission to find out.
He doesn't have any lesions or fractures to my knowledge, just swollen lymph nodes in his inner thigh and on his left side.
We are in the north Mississippi area. I am not certain that our oncologist specializes in multiple myeloma, but now I'm on a mission to find out.
Re: Father just diagnosed with myeloma - what should I do?
Hi Kay,
I'm 27 and my dad was just diagnosed (Monday) as well. I'm in utter shock. His dad is 96 and still going strong, he is incredibly healthy otherwise (eats right, exercises, doesn't drink often).After a bout with flu-like symptoms this summer, his blood count continued to drop to serious levels, at which point he got the marrow and bone biopsies. He went for his full bone scan Tuesday and we will know the stage Monday. Until further testing, for now the oncologist said he is neither at the very early or very late stage. We live in CT so will be deciding between Sloan-Kettering or Dana-Farber. I should probably post something specifically about that myself.
Anyway, although I do not have answers for you, or myself, I have already found this site incredibly helpful. Read everything and people's comments! People are so positive and supportive of each other and the medical articles are honest and extremely current.
Best of luck,
Britt
I'm 27 and my dad was just diagnosed (Monday) as well. I'm in utter shock. His dad is 96 and still going strong, he is incredibly healthy otherwise (eats right, exercises, doesn't drink often).After a bout with flu-like symptoms this summer, his blood count continued to drop to serious levels, at which point he got the marrow and bone biopsies. He went for his full bone scan Tuesday and we will know the stage Monday. Until further testing, for now the oncologist said he is neither at the very early or very late stage. We live in CT so will be deciding between Sloan-Kettering or Dana-Farber. I should probably post something specifically about that myself.
Anyway, although I do not have answers for you, or myself, I have already found this site incredibly helpful. Read everything and people's comments! People are so positive and supportive of each other and the medical articles are honest and extremely current.
Best of luck,
Britt
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BallerinaBritt - Name: BallerinaBritt
- Who do you know with myeloma?: dad
- When were you/they diagnosed?: November 3, 2014
- Age at diagnosis: 58
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