Hi All,
I am new here. My mom was diagnosed with multiple myeloma in October 2013. She has lambda light chain myeloma.
Upon her first being diagnosed with multiple myeloma, we were told this is a chronic illness, that she would be fine, and that 10 years ago this was a death sentence but there is new treatment constantly evolving for the "disease" and she would be fine.
Surprisingly, or maybe not so surprisingly, we have found out how they were lying. She started treatment with Revlimid and dexamethasone in October and was seemingly doing well. She had a reaction that caused hemolysis and, while we believe the hospital gave her the wrong blood during a transfusion, her oncologist is uncertain if it was the Revlimid or the blood transfusion.
This landed her in the hospital for 3 weeks with kidney failure and on dialysis for a month and a half, but she pulled through.
Then she started Velcade and during this time, due to depression from her diagnosis and dialysis, my mom wouldn't get up; she only went to dialysis and came home and basically lived on the couch. She got a pulmonary embolism and was hospitalized again for a week and a half. Good thing about this was they found out she didn't need dialysis and her kidneys were back to functioning at 100%.
The Velcade worked for a bit and the her proteins came climbing back up to about where she began her treatment. Her doctor has now put her on Kyprolis as, prior to her proteins climbing, we were preparing for her to get a stem cell transplant. The Kyprolis is giving her weird side effects, so I'm not certain what is next.
She went to get a second opinion and this doctor wants to treat her aggressively with a combination of chemo. He said the side effects would be horrible and he would want her to stay in the hospital for a month. My mom is worried about this because she takes care of my grandmother and through all of this my grandmother doesn't know she has a cancer.
I was wondering if someone could give me some sound advice. This is scary. I don't know life without my mother and I just want to help her, as she's always taken care of me.
Can a plant based diet help in any way? Any treatment options that anyone can recommend? Anyone been at this stage in their treatment and things got better?
Thanks in advance for any comments.
Jane
Forums
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plainjane07 - Name: Plain Jane
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 65
Re: Mom diagnosed with myeloma - treatment not going well
Hi Jane, I am sorry to hear about all the trials that your Mom has been through in the last five months. It does sound like an awful lot to contend with. I am glad to know that at least her kidneys are functioning well again, and that she doesn't need dialysis now.
I don't live in the US and thus am not up on all of the latest treatments, but I think that the consensus that most experienced patients have is to seek out the best and most expert help available. If you would share what city or state you are in (and I just assume it is in the US since you mentioned Kyprolis, which is approved there), maybe others could share where they think a good treatment centre is. You are already getting a second opinion, which seems a good idea.
For the family situation, probably it might be best to find some other help for your grandmother right now. It's a lot to cope with being a patient actually. Your grandmother might like to know about her daughter's cancer, since many seniors have lived though a lot and have wise counsel to share with their family members. You would have to assess as to whether that would be a good idea, though.
I hope that you can get back on track with the treatments for the myeloma that your mother is suffering from. Best wishes!
I don't live in the US and thus am not up on all of the latest treatments, but I think that the consensus that most experienced patients have is to seek out the best and most expert help available. If you would share what city or state you are in (and I just assume it is in the US since you mentioned Kyprolis, which is approved there), maybe others could share where they think a good treatment centre is. You are already getting a second opinion, which seems a good idea.
For the family situation, probably it might be best to find some other help for your grandmother right now. It's a lot to cope with being a patient actually. Your grandmother might like to know about her daughter's cancer, since many seniors have lived though a lot and have wise counsel to share with their family members. You would have to assess as to whether that would be a good idea, though.
I hope that you can get back on track with the treatments for the myeloma that your mother is suffering from. Best wishes!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Mom diagnosed with myeloma - treatment not going well
Thank you Nancy. We live in Philadelphia, PA. At this point, I am ready to take my mom wherever she has to go for treatment. I have moved back to Pennsylvania to help out and will be moving in to help my mom with my grandmom. So hopefully she will be able to, or feel more comfortable with, doing the aggressive treatments.
Hopefully someone can recommend a specialist in Philly or close. My mom's oncologist is a bit morbid and it's frustrating. He's constantly reminding my mom that she's eventually going to die from myeloma. Smh. Thanks again though Nancy.
Hopefully someone can recommend a specialist in Philly or close. My mom's oncologist is a bit morbid and it's frustrating. He's constantly reminding my mom that she's eventually going to die from myeloma. Smh. Thanks again though Nancy.
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plainjane07 - Name: Plain Jane
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 65
Re: Mom diagnosed with myeloma - treatment not going well
Well, really, i wouldn't like that either, if someone were to continually tell me what I was going to die from! I think that's a bit much, since it is not given to us to know such things. Even if one is really ill, we still all have hope for the future.
I can only say that I have visited Philadelphia last year and it is a beautiful, stately, historic place. We were there to meet my first grand niece (or grand nephew!), not for any medical reasons really. I am sure that there would be some choices there, since it is a large city.
I can only say that I have visited Philadelphia last year and it is a beautiful, stately, historic place. We were there to meet my first grand niece (or grand nephew!), not for any medical reasons really. I am sure that there would be some choices there, since it is a large city.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Mom diagnosed with myeloma - treatment not going well
Several regular posters on this site are in Philadelphia and have received excellent treatment at the University of Pennsylvania Abramson Cancer Center. Penn has an excellent myeloma program. That would be a good place for your mom to visit if she has not already been there for treatment.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Mom diagnosed with myeloma - treatment not going well
Hi plainjane07, boy you're sure getting conflicting outlooks from the two different oncologists your mom has seen. It's tough enough to try to process all the new information you get with a multiple myeloma diagnosis when the information is consistent. I can only imagine how difficult it must be for you and your mom to try to handle such wildly different viewpoints as what you've gotten so far.
As you probably have figured out by now, the truth is somewhere between the two extremes that you've been given, both in terms of prognosis and treatment side effects. As goldmine848 said, Penn has a very good myeloma program based on what several people posting to this forum have said. Well worth checking that out. I'm a strong believer in connecting with the most experienced, best medical team you can find when dealing with multiple myeloma. You want a specialist who deals with this disease all the time, not an oncologist who only rarely sees someone with it.
As you probably have figured out by now, the truth is somewhere between the two extremes that you've been given, both in terms of prognosis and treatment side effects. As goldmine848 said, Penn has a very good myeloma program based on what several people posting to this forum have said. Well worth checking that out. I'm a strong believer in connecting with the most experienced, best medical team you can find when dealing with multiple myeloma. You want a specialist who deals with this disease all the time, not an oncologist who only rarely sees someone with it.
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Mom diagnosed with myeloma - treatment not going well
Mike's and Goldmine's advice makes a lot of sense. Penn is a top notch facility.
If you are willing to travel a bit further, Memorial Sloane-Kettering in NY just landed Dr. Ola Landgren, who I respect greatly for his work in the area of smoldering multiple myeloma.
If you are willing to travel a bit further, Memorial Sloane-Kettering in NY just landed Dr. Ola Landgren, who I respect greatly for his work in the area of smoldering multiple myeloma.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Mom diagnosed with myeloma - treatment not going well
My experience is similar, Lambda, dialysis, etc, but Velcade worked for me. The one big difference would be that my doctor was never negative and in fact has been positive, at least to the point of reminding me there are new drugs coming out and research ongoing.
I would see if you can get some mental help for your mother to see if her spirits can be lifted and definitely look to new medical help.
I would see if you can get some mental help for your mother to see if her spirits can be lifted and definitely look to new medical help.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Mom diagnosed with myeloma - treatment not going well
Living near Philadelphia puts you in proximity to a number of excellent myeloma centers. I'm being treated at Abramson Cancer Center at Penn where there is a team of 4 oncologists who treat only people with myeloma. The oncologists are: Dr. Stadtmauer, Dr. Vogl, Dr. Weiss and Dr. Cohen. Each of them tends to be quite upbeat about treatment and prognosis, but also realistic if things aren't going well or when the person has aggressive disease. I see Dr. Stadtmauer and have been happy with how he and I discuss options before deciding on what path to take. But, I also do my own research so that I am prepared with questions and opinions. We make decisions about my care collaboratively.
In addition to Penn, Thomas Jefferson University Hospital has a myeloma program. They are also in the middle of the city. In Northern New Jersey there is John Theurer Cancer Center at Hackensack. In New York City are Sloan-Kettering, Mt. Sinai and Weil-Cornell/Columbia. In Baltimore are Johns Hopkins and University of Maryland. All of these are excellent centers with well known myeloma specialists.
All of these places are conducting clinical research programs in the treatment of myeloma. So, if your mother needed to go that route for treatment, there might be a program that would be appropriate for her. Penn has at least 20 different research programs at the moment with more expected to begin within this year.
Although the majority of people who are diagnosed with myeloma can be treated quite effectively with the drugs that are available, there is a percentage of people who have very aggressive disease. In general doctors don't like to focus on that group when meeting with a newly diagnosed person, because until treatment is started one doesn't know how the person will respond.
Please take the time to find out the results of all of your mother's tests, especially the results of her bone marrow biopsy and if genetic testing was done. These results give a lot of information as to whether the myeloma may be of the difficult to treat type. Contact the International Myeloma Foundation and the Multiple Myeloma Research Foundation for information about myeloma. They both have very good materials explaining the disease, treatments, what tests should be done for diagnosis and to follow the disease, what the various tests mean, etc. In this case knowledge definitely is power.
The best to your mother in finding a treatment regimen that is effective for her,
Nancy in Phila
In addition to Penn, Thomas Jefferson University Hospital has a myeloma program. They are also in the middle of the city. In Northern New Jersey there is John Theurer Cancer Center at Hackensack. In New York City are Sloan-Kettering, Mt. Sinai and Weil-Cornell/Columbia. In Baltimore are Johns Hopkins and University of Maryland. All of these are excellent centers with well known myeloma specialists.
All of these places are conducting clinical research programs in the treatment of myeloma. So, if your mother needed to go that route for treatment, there might be a program that would be appropriate for her. Penn has at least 20 different research programs at the moment with more expected to begin within this year.
Although the majority of people who are diagnosed with myeloma can be treated quite effectively with the drugs that are available, there is a percentage of people who have very aggressive disease. In general doctors don't like to focus on that group when meeting with a newly diagnosed person, because until treatment is started one doesn't know how the person will respond.
Please take the time to find out the results of all of your mother's tests, especially the results of her bone marrow biopsy and if genetic testing was done. These results give a lot of information as to whether the myeloma may be of the difficult to treat type. Contact the International Myeloma Foundation and the Multiple Myeloma Research Foundation for information about myeloma. They both have very good materials explaining the disease, treatments, what tests should be done for diagnosis and to follow the disease, what the various tests mean, etc. In this case knowledge definitely is power.
The best to your mother in finding a treatment regimen that is effective for her,
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: Mom diagnosed with myeloma - treatment not going well
Hi Everyone,
Thank you so much for your responses. It has given me hope.
I can't always make my mom's oncology appointments with, her but whatever her oncologist has said to her today has my mom discouraged. She is currently being treated at Thomas Jefferson and she had her 2nd opinion at Penn. I told my mom the wonderful things I've heard about Penn and how optimistic I am that they can help her. I do know that my mom does have aggressive disease, but the doctor at Penn specified to get the disease under control and go from there.
Again thank you everyone. I'm taking my mom to lunch tomorrow so we can talk in detail and come up with a plan. Thanks for giving me some kind of hope.
Best wishes,
Jane
Thank you so much for your responses. It has given me hope.
I can't always make my mom's oncology appointments with, her but whatever her oncologist has said to her today has my mom discouraged. She is currently being treated at Thomas Jefferson and she had her 2nd opinion at Penn. I told my mom the wonderful things I've heard about Penn and how optimistic I am that they can help her. I do know that my mom does have aggressive disease, but the doctor at Penn specified to get the disease under control and go from there.
Again thank you everyone. I'm taking my mom to lunch tomorrow so we can talk in detail and come up with a plan. Thanks for giving me some kind of hope.
Best wishes,
Jane
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plainjane07 - Name: Plain Jane
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 65
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