I apologize if I am in the wrong area to post this or am doing anything wrong, ( I just registered for this forum minutes ago looking for answers)
My grandmother was diagnosed with multiple myeloma just a few weeks ago, and since the diagnosis all hell broke lose. She ended up in the hospital, we had to abandon our vacation, she has been throwing up a lot and just today she had a fall that sent her to the hospital and she came out with a broken arm.
I don't know much about this cancer at all. I came across the Myeloma Beacon while looking for stories that my grandmother would relate to.
My grandmother isn't old or anything. She's only 66. She is like a mother since she was so young when I was born.
I'm very curious about this disease. Are there stages for it? My grandmother I presume is the highest (worst) stage from what I've been hearing at hospital.
What are the survival rates? My grandmother has had NO health problems prior to diagnosis. I don't know if that helps. I worry every night fearing she will die.
Most of all she's to young to go. She has so much fight left in her and if she passed I don't know what I'd do.
She fell earlier today and broke her arm. Will the arm ever heal?
Any answers are greatly appreciate.
Forums
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enieweler - Name: Erik
- Who do you know with myeloma?: Grandmother
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 66
Re: Grandmother newly diagnosed - looking for answers
I should also add that my grandmother's bones are very weak. She has I believe they are called lesions or holes in her skull, her back is practically broken yet she can barely walk. Her broken arm from her fall today was on her writing arm (which was weak and vulnerable to begin with). I believe she has a break in or near her hip, another fracture in her lower back close to the buttocks. And many many many other little breaks throughout her body. She also has a tumor pressing on her eye making her blind in her left eye.
If any of this info helps, I'd be greatly appreciative of any help or answers to put my mind at ease.
If any of this info helps, I'd be greatly appreciative of any help or answers to put my mind at ease.
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enieweler - Name: Erik
- Who do you know with myeloma?: Grandmother
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 66
Re: Grandmother newly diagnosed - looking for answers
Hello,
I'm sorry that your grandmother is ill, and my thoughts are with you and your family for a fast and successful treatment regimen that will give your grandma many more years of quality life.
I think that a very good place to start (if you haven't already) is to go to the Myeloma Beacon's resources section, and read as much as you can
https://myelomabeacon.org/resources/
Once you have digested some amount of this, continue with questions.
Best wishes,
Alex
I'm sorry that your grandmother is ill, and my thoughts are with you and your family for a fast and successful treatment regimen that will give your grandma many more years of quality life.
I think that a very good place to start (if you haven't already) is to go to the Myeloma Beacon's resources section, and read as much as you can
https://myelomabeacon.org/resources/
Once you have digested some amount of this, continue with questions.
Best wishes,
Alex
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: Grandmother newly diagnosed - looking for answers
Thanks for your help. I will check it out.
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enieweler - Name: Erik
- Who do you know with myeloma?: Grandmother
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 66
Re: Grandmother newly diagnosed - looking for answers
Sorry to hear about your grandmother, enieweler.
Alex's suggestion is a good one. The resources section of The Beacon is a good starting point.
You'll also find a lot of current information here in the forum just by searching it. When you search it from the forum search box, be sure to use just single keywords, such as "bone" or "bones", or "survival", or "stage", "staging", "stages", "lesion", "lesions", "prognosis" or life "expectancy".
The search system unfortunately isn't as powerful as, say, Google, so single keywords work best. You will, however, find lots of useful information with these simple searches.
The same tip -- using single keywords -- is true of the search box for the site overall (in the menu bar) -- single keywords will typically work best. There are also some treatment-related links for discussions in the forum in this forum posting, and the Beacon's news page has a list of links at the top that will take you to topic (tag) pages with lists of articles on specific subjects.
The Wikipedia article on myeloma is a good resource as well, if you haven't checked it out yet.
One thing that will be very important for your grandmother is to arrange for her to be under the care of a physician specialized in multiple myeloma. Particularly because she has a fair number of issues right now at diagnosis, it will be helpful for her to be under the care of a physician -- or team of physicians -- accustomed to working with multiple myeloma patients day in and day out.
If your grandmother can't be seen by a myeloma specialist right away, please ask her current physicians if they could at least try to consult with a myeloma specialist about key decisions.
Your grandmother's physicians are also the best source of information about her prognosis. The survival of myeloma patients is -- fortunately -- increasing at a rapid rate due to new treatments becoming available (and more on the way). So old statistics are horribly out of date. Also, myeloma is a very individual disease. So an assessment of your grandmother's prognosis by a myeloma specialist is going to be the best source of information about her prognosis.
We hope your grandmother does well going forward, and please feel free to come back here and share with us updates and start new forum threads with specific questions you may have. (You'll get the most help with questions if you are specific about them and try to ask a question, or questions, on one subject per forum thread.)
Good luck!
Alex's suggestion is a good one. The resources section of The Beacon is a good starting point.
You'll also find a lot of current information here in the forum just by searching it. When you search it from the forum search box, be sure to use just single keywords, such as "bone" or "bones", or "survival", or "stage", "staging", "stages", "lesion", "lesions", "prognosis" or life "expectancy".
The search system unfortunately isn't as powerful as, say, Google, so single keywords work best. You will, however, find lots of useful information with these simple searches.
The same tip -- using single keywords -- is true of the search box for the site overall (in the menu bar) -- single keywords will typically work best. There are also some treatment-related links for discussions in the forum in this forum posting, and the Beacon's news page has a list of links at the top that will take you to topic (tag) pages with lists of articles on specific subjects.
The Wikipedia article on myeloma is a good resource as well, if you haven't checked it out yet.
One thing that will be very important for your grandmother is to arrange for her to be under the care of a physician specialized in multiple myeloma. Particularly because she has a fair number of issues right now at diagnosis, it will be helpful for her to be under the care of a physician -- or team of physicians -- accustomed to working with multiple myeloma patients day in and day out.
If your grandmother can't be seen by a myeloma specialist right away, please ask her current physicians if they could at least try to consult with a myeloma specialist about key decisions.
Your grandmother's physicians are also the best source of information about her prognosis. The survival of myeloma patients is -- fortunately -- increasing at a rapid rate due to new treatments becoming available (and more on the way). So old statistics are horribly out of date. Also, myeloma is a very individual disease. So an assessment of your grandmother's prognosis by a myeloma specialist is going to be the best source of information about her prognosis.
We hope your grandmother does well going forward, and please feel free to come back here and share with us updates and start new forum threads with specific questions you may have. (You'll get the most help with questions if you are specific about them and try to ask a question, or questions, on one subject per forum thread.)
Good luck!
Re: Grandmother newly diagnosed - looking for answers
Thank you so much for the info. I greatly appreciate it. I will look into seeing a specialist as it would help, and I'll definitely come back if I have more questions.
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enieweler - Name: Erik
- Who do you know with myeloma?: Grandmother
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 66
Re: Grandmother newly diagnosed - looking for answers
I was asked to provide updates in this thread. Well I have a few.
My grandmother has just come out of surgery for her broken arm. She has been in recovery all day and I haven't seen her, I haven't even been able to get to the hospital today, but, according to my aunt, she is having problems with her kidney.
I'm wondering, is it usual to have kidney problems this long after diagnosis? And why are these kidney problems happening? I'm not that educated on this and I haven't been in contact with the doctor today so I have no clue what answers to expect.
Also, last week there was a mention of a stem cell transplant. I know the basics about what it is, you transport healthy cells I believe into the immune system, but what else does a stem cell transplant do? How does it help in the long run with keeping the cancer at bay? And does getting a stem cell transplant increase the life of a patient more than if they don't get a transplant?
Thanks.
My grandmother has just come out of surgery for her broken arm. She has been in recovery all day and I haven't seen her, I haven't even been able to get to the hospital today, but, according to my aunt, she is having problems with her kidney.
I'm wondering, is it usual to have kidney problems this long after diagnosis? And why are these kidney problems happening? I'm not that educated on this and I haven't been in contact with the doctor today so I have no clue what answers to expect.
Also, last week there was a mention of a stem cell transplant. I know the basics about what it is, you transport healthy cells I believe into the immune system, but what else does a stem cell transplant do? How does it help in the long run with keeping the cancer at bay? And does getting a stem cell transplant increase the life of a patient more than if they don't get a transplant?
Thanks.
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enieweler - Name: Erik
- Who do you know with myeloma?: Grandmother
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 66
Re: Grandmother newly diagnosed - looking for answers
Erik,
Issues with one's kidneys (renal impairment, renal insufficiency, etc) are one of the classic symptoms of active, symptomatic myeloma. Unless your Mom is actually being treated for multiple myeloma, this condition won't get better on its own and could worsen. The reason behind why this happens is a bit involved. The simplest way to think about it is that there are certain abnormal proteins that are created in excess with this disease, and they can essentially overwhelm and/or block the flow of fluid in one's kidneys.
For treatment, your Grandma basically will have two choices. One would be to get what is known as an autologous stem cell transplant. The other choice would be to simply treat the disease with only drugs (which also involves quite a few decisions regarding which drugs to use). These are not simple decisions and the tradeoffs need to be discussed thoroughly with a multiple myeloma specialist. Your Grandma's overall health will also be a factor to consider when making this choice.
If you let us know what city your Grandma is in, folks on this site can make some recommendations as to which specialists and/or institution to seek out.
Issues with one's kidneys (renal impairment, renal insufficiency, etc) are one of the classic symptoms of active, symptomatic myeloma. Unless your Mom is actually being treated for multiple myeloma, this condition won't get better on its own and could worsen. The reason behind why this happens is a bit involved. The simplest way to think about it is that there are certain abnormal proteins that are created in excess with this disease, and they can essentially overwhelm and/or block the flow of fluid in one's kidneys.
For treatment, your Grandma basically will have two choices. One would be to get what is known as an autologous stem cell transplant. The other choice would be to simply treat the disease with only drugs (which also involves quite a few decisions regarding which drugs to use). These are not simple decisions and the tradeoffs need to be discussed thoroughly with a multiple myeloma specialist. Your Grandma's overall health will also be a factor to consider when making this choice.
If you let us know what city your Grandma is in, folks on this site can make some recommendations as to which specialists and/or institution to seek out.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Grandmother newly diagnosed - looking for answers
Hi there and thanks for your reply.
So we are in North Vancouver, British Columbia. I hope that helps.
I do though want to give an update. I was talking with my grandma and she told me exact words "its not looking good." Well that pretty much tells me how the outcome is looking. She said she's gonna fight her heart out and take it day by day.
I should also point out she is off chemo for now since she just broke her arm and is on MANY pain relievers and drugs. I guess that means without chemo her kidney will fail more.
I don't know what to think. I go to sleep worrying she's going to end up in the local hospice (a one way road to death in my family's eyes), which is where my 2 other dead grandparents lived and died with cancer. Both died when they were too young years ago.
I know there are people who are out there that have been a sliver away from death and have come up and into remission from myeloma, and I pray that happens to her.
The doctor isn't giving any answers as to when she will go on chemo again and, if her kidneys don't start working, it's onto dialysis. And by the time she's on dialysis and cleared for chemo (if she's even cleared for it), I'm worried the cancer would have spread and it would be too late.
I thought people lived years after diagnosis -- not just one month, which is looking what it's going to be like in my grandma's case.
Anyway, any replies are greatly appreciated. Sorry for ranting on. I just feel comfortable here dishing out everything.
Thanks.
So we are in North Vancouver, British Columbia. I hope that helps.
I do though want to give an update. I was talking with my grandma and she told me exact words "its not looking good." Well that pretty much tells me how the outcome is looking. She said she's gonna fight her heart out and take it day by day.
I should also point out she is off chemo for now since she just broke her arm and is on MANY pain relievers and drugs. I guess that means without chemo her kidney will fail more.
I don't know what to think. I go to sleep worrying she's going to end up in the local hospice (a one way road to death in my family's eyes), which is where my 2 other dead grandparents lived and died with cancer. Both died when they were too young years ago.
I know there are people who are out there that have been a sliver away from death and have come up and into remission from myeloma, and I pray that happens to her.
The doctor isn't giving any answers as to when she will go on chemo again and, if her kidneys don't start working, it's onto dialysis. And by the time she's on dialysis and cleared for chemo (if she's even cleared for it), I'm worried the cancer would have spread and it would be too late.
I thought people lived years after diagnosis -- not just one month, which is looking what it's going to be like in my grandma's case.
Anyway, any replies are greatly appreciated. Sorry for ranting on. I just feel comfortable here dishing out everything.
Thanks.
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enieweler - Name: Erik
- Who do you know with myeloma?: Grandmother
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 66
Re: Grandmother newly diagnosed - looking for answers
Eineweler,
I am so sorry to hear about your grandmother. Don't give up on her. Many people are in similar situations when they are first diagnosed and get better once they start treatment.
Myeloma isn't like other cancers. Stage is less important than type of myeloma and whether or not she has any bad genetic markers. From what you say about it being "the worst stage" it sounds like she does, although these are becoming less important than they once were.
The kidney and bone issues are fairly common with multiple myeloma. At some point they will start her on drugs to help strengthen her bones. And even if your grandmother has to go on dialysis, many people find they can come off of it once their multiple myeloma is under control. However, the kidney issues could affect some of the drugs that she can take for the multiple myeloma. Some drugs are harder on the kidneys than others. However there are lots of option and one will be right for your grandmother.
My husband (also Erik with a K!) was diagnosed when he had surgery for a ruptured colon. He had to wait about 8 weeks for his incisions to heal before he could start treatment. Thankfully, multiple myeloma tends to be a slow moving disease and it was not a problem.
Once your grandmother is stabilized they will start her treating her - most likely with a combination of drugs. If you have time, there is lots of information on this site about induction therapies. Most of these drugs are new and referred to as "novel therapies." They are different from the old chemo drugs, with far fewer side effects. Hopefully she will have a good response to these drugs. After that she may or may not decide to have a stem cell transplant -- but that's down the road a bit.
Anyway, hope this helps. I will be thinking of both you and your grandmother.
Lyn
I am so sorry to hear about your grandmother. Don't give up on her. Many people are in similar situations when they are first diagnosed and get better once they start treatment.
Myeloma isn't like other cancers. Stage is less important than type of myeloma and whether or not she has any bad genetic markers. From what you say about it being "the worst stage" it sounds like she does, although these are becoming less important than they once were.
The kidney and bone issues are fairly common with multiple myeloma. At some point they will start her on drugs to help strengthen her bones. And even if your grandmother has to go on dialysis, many people find they can come off of it once their multiple myeloma is under control. However, the kidney issues could affect some of the drugs that she can take for the multiple myeloma. Some drugs are harder on the kidneys than others. However there are lots of option and one will be right for your grandmother.
My husband (also Erik with a K!) was diagnosed when he had surgery for a ruptured colon. He had to wait about 8 weeks for his incisions to heal before he could start treatment. Thankfully, multiple myeloma tends to be a slow moving disease and it was not a problem.
Once your grandmother is stabilized they will start her treating her - most likely with a combination of drugs. If you have time, there is lots of information on this site about induction therapies. Most of these drugs are new and referred to as "novel therapies." They are different from the old chemo drugs, with far fewer side effects. Hopefully she will have a good response to these drugs. After that she may or may not decide to have a stem cell transplant -- but that's down the road a bit.
Anyway, hope this helps. I will be thinking of both you and your grandmother.
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
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