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Mother has multiple myeloma - 6 weeks diagnosed and not doing well
Hello, all. I'm new here. My mother was diagnosed w/ stage 3 multiple myeloma 6 weeks ago. A quick background - she had back pain and went into see her primary, had blood work done and it showed the classic symptoms of multiple myeloma. They had her check-in to the hospital the same day and the next morning (after a serium electrophersis showed evidence of multiple myeloma), her doctor told her that they were certain that's what she had. She saw an oncologist a few days later - more labs and he said that for certain, she has multiple myeloma. He opted not to do a bone marrow biopsy b/c of the labs showing that is what she had and due to her age (67 y.o.), that he was not going to put her through a biopsy b/c she wasn't a candidate for a bone marrow transplant. She's had severe nausea and vomiting for several weeks - hasn't eaten anything in that time, other than an Ensure once in a while (she says she can't get down more than a little bit). My father thinks it's psychological, since the meds for both appetite and nausea aren't working (they've tried a couple different kinds). I suggested she get on IV nutrition therapy, but they're hesitant b/c it bypasses the gut and it wouldn't be a long-term fix. Plus, the risk of infection and her kidneys are not functioning well due to the multiple myeloma as well. I'm literally watching her waste away in front of my eyes and my father has tried everything to get her to eat, to no avail. I'm hoping someone on this board has dealt with something similar, or has a loved one with multiple myeloma that has and can offer any advice. We don't know what else to do. Thank you.
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veganmartin - Name: Kristen
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 67
Re: Mother has multiple myeloma - 6 weeks diagnosed and not
Hi Veganmartin,
Sorry to hear that your mother is having a really rough time of it. Has she tried Ondansetron (Zofran - made by GlaxoSmithKline) it helped me considerably where as some of the other anti-nausea medications didn't work at all.
When I felt really sick and didn't think I could eat anything (for fear of bringing it back up) I would have some of the fortified drinks available (In Australia known as Fortisip - I think made by Nestle) that have protein, iron, carbs, fibre, trace elements and minerals. I would drink these VERY slowly and was told by the hospital to have 3/day with some small meals. If you feel it would help get a dietician to tell her about the drinks. IV feeding is awful, I was on it for about 10 days, and in that time came to realise how much I wanted to drink something but wasn't able to.
All the best
Sorry to hear that your mother is having a really rough time of it. Has she tried Ondansetron (Zofran - made by GlaxoSmithKline) it helped me considerably where as some of the other anti-nausea medications didn't work at all.
When I felt really sick and didn't think I could eat anything (for fear of bringing it back up) I would have some of the fortified drinks available (In Australia known as Fortisip - I think made by Nestle) that have protein, iron, carbs, fibre, trace elements and minerals. I would drink these VERY slowly and was told by the hospital to have 3/day with some small meals. If you feel it would help get a dietician to tell her about the drinks. IV feeding is awful, I was on it for about 10 days, and in that time came to realise how much I wanted to drink something but wasn't able to.
All the best
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Mother has multiple myeloma - 6 weeks diagnosed and not
Thank you very much for your reply, Libby. Yes, she has been on Zofran for several weeks - both orally (3x/daily) and they have given it to her as an injection at times in the oncologist's office as well.
They just changed that b/c the Zofran wasn't doing anything for her.
I'm wondering now if this could all be due to Amyloidoisis. She has all of the symptoms: chronic nausea, easy bruising/skin changes, severe fatigue, feeling full quickly (which is why she's not eating), weakness, shortness of breath (even with the slightest of exertion), and significant weight loss.
She has to go into the onc office today for IV fluids and I'm going to ask about this. I think it may be time to get her checked into the hospital so we can get down to the bottom of this.
They just changed that b/c the Zofran wasn't doing anything for her.
I'm wondering now if this could all be due to Amyloidoisis. She has all of the symptoms: chronic nausea, easy bruising/skin changes, severe fatigue, feeling full quickly (which is why she's not eating), weakness, shortness of breath (even with the slightest of exertion), and significant weight loss.
She has to go into the onc office today for IV fluids and I'm going to ask about this. I think it may be time to get her checked into the hospital so we can get down to the bottom of this.
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veganmartin - Name: Kristen
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 67
Re: Mother has multiple myeloma - 6 weeks diagnosed and not
I am sorry to hear that your mother is not doing well. The addition of Amyloid deposition in patients with myeloma only makes things more difficult. It sounds as though your mom is struggling with the disease as well as therapy.
Maintaining good hydration, boost/ensure shakes, and dietary support our going to be important. If not already done the use of multiple anti-nausea agents may also be helpful- not one vs the other but 1+ 1 +1 if necessary. Reglan, compazie, ativan, steroids, scopalamine patches, marinol are all medications that can help with nausea and in some cases appetite.
Sometimes it takes a hospitalization to get things under control. If she is doing a poorly as it sounds that may be an avenue to take.
For the record 67 is not old in myeloma years.
We wish you, your mother, and your family the very best.
Maintaining good hydration, boost/ensure shakes, and dietary support our going to be important. If not already done the use of multiple anti-nausea agents may also be helpful- not one vs the other but 1+ 1 +1 if necessary. Reglan, compazie, ativan, steroids, scopalamine patches, marinol are all medications that can help with nausea and in some cases appetite.
Sometimes it takes a hospitalization to get things under control. If she is doing a poorly as it sounds that may be an avenue to take.
For the record 67 is not old in myeloma years.
We wish you, your mother, and your family the very best.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Mother has multiple myeloma - 6 weeks diagnosed and not
Thank you very much, Dr. Shain. They did prescribe Marinol yesterday, but I cannot recall the other anti-nausea medication they switched her to. I will suggest today to combine the others as well. I'm curious as to why I'm the one that has to (every visit) make these suggestions and today I will bring up the possibility of Amyloidosis. Isn't this their job as the oncology provider?
Is 67 too old for a stem cell transplant? That's all that the oncologist gave as a reason why he feels she is not a candidate. And, the reason he didn't want to do a bone marrow aspiration and biopsy. My friend is a pathologist in the mid-west and he wasn't very happy with the fact that the onc didn't follow the protocol in terms of diagnosis w/o doing a bone marrow biopsy.
When I questioned the onc as to what stage she is in, he just said, "stage III - she can't go any further that that", I was thinking, "how did you make that determination w/o doing a biopsy?".
I will suggest hospitalization today when I see the NP at the oncologist office while she's receiving IV fluids. I know that my parents want to avoid that, but after I talked to a family member this morning, and reading your post, I think that's probably the direction we need to go in to get her stabilized.
Thank you very much.
Is 67 too old for a stem cell transplant? That's all that the oncologist gave as a reason why he feels she is not a candidate. And, the reason he didn't want to do a bone marrow aspiration and biopsy. My friend is a pathologist in the mid-west and he wasn't very happy with the fact that the onc didn't follow the protocol in terms of diagnosis w/o doing a bone marrow biopsy.
When I questioned the onc as to what stage she is in, he just said, "stage III - she can't go any further that that", I was thinking, "how did you make that determination w/o doing a biopsy?".
I will suggest hospitalization today when I see the NP at the oncologist office while she's receiving IV fluids. I know that my parents want to avoid that, but after I talked to a family member this morning, and reading your post, I think that's probably the direction we need to go in to get her stabilized.
Thank you very much.
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veganmartin - Name: Kristen
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 67
Re: Mother has multiple myeloma - 6 weeks diagnosed and not
Hi VeganMartin,
You do not need a BoneMarrowBiopsy/Aspiration to determine Stage of disease. That is assessable by the free light chain assay, along with PET scan.
While, I disagree about his 'she can't go further than that...if he is dx based on FLC you are in good hands.
The BM test tells more about proliferation rate and number of cancerous cells, BUT it also can be misleading since the cells are not evenly distributed in the marrow. In other words, he could hit a hot spot or not so hot spot and that only leads to questionable severity of disease.
The physicians here can tell you how the BM provides information that the FLC doesn't. But in terms of dx, you are doing well.
Your physician knows that and is using the most accurate test.
Now if you want to know other things..such as cytogenetic profile..then a FISH on BM would be good...that only determines risk,, not IF the disease diagnoses is correct.
Your doc is doing what is best, have confidence in that.
You do not need a BoneMarrowBiopsy/Aspiration to determine Stage of disease. That is assessable by the free light chain assay, along with PET scan.
While, I disagree about his 'she can't go further than that...if he is dx based on FLC you are in good hands.
The BM test tells more about proliferation rate and number of cancerous cells, BUT it also can be misleading since the cells are not evenly distributed in the marrow. In other words, he could hit a hot spot or not so hot spot and that only leads to questionable severity of disease.
The physicians here can tell you how the BM provides information that the FLC doesn't. But in terms of dx, you are doing well.
Your physician knows that and is using the most accurate test.
Now if you want to know other things..such as cytogenetic profile..then a FISH on BM would be good...that only determines risk,, not IF the disease diagnoses is correct.
Your doc is doing what is best, have confidence in that.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Mother has multiple myeloma - 6 weeks diagnosed and not
I'm so sorry your mom is having so much trouble!
I noticed that several of the drugs that Dr. Shain suggested for nausia also are used to help with anxiety -- specifically the compazine and ativan (I don't know about the other drugs). Your dad seems to think that some of her inability to eat is emotional. You may want to talk to your doctor about them -- they might help with her stress.
Lyn
I noticed that several of the drugs that Dr. Shain suggested for nausia also are used to help with anxiety -- specifically the compazine and ativan (I don't know about the other drugs). Your dad seems to think that some of her inability to eat is emotional. You may want to talk to your doctor about them -- they might help with her stress.
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: Mother has multiple myeloma - 6 weeks diagnosed and not
Have been reading about myeloma for many years. I have noted many folks who have had transplants over 67. If I'm correct, I remember this coming from a patient seminar also that it is more and more common to transplant in those older than 60.
The one piece of advice I was given long ago and still go by is to ALWAYS consult with a myeloma specialist.
I'm sorry to hear of her current condition and I am very sure she is glad to have you on her support team.
The one piece of advice I was given long ago and still go by is to ALWAYS consult with a myeloma specialist.
I'm sorry to hear of her current condition and I am very sure she is glad to have you on her support team.
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NancyStLou - Name: NancyStLou
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: multiple myeloma 1/2012; SMM 5/2005; MGUS 10/2002;
- Age at diagnosis: 47
Re: Mother has multiple myeloma - 6 weeks diagnosed and not
Hello all and thank you so much for the wonderful and helpful replies. Last night her oncologist called and told us we needed to get her into the hospital because her labs from earlier in the day had her creatinine at over 8. So we brought her in and they admitted her after about 7 hours in the ER. They put a port in this morning and started dialysis this afternoon. The dialysis nurse said that from his experience the majority of multiple myeloma patients he has treated do not ever stop dialysis (I guess I was under the impression that this was temporary and once her multiple myeloma was under control her kidney function would improve). Is anyone on here on dialysis? Thank you
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veganmartin - Name: Kristen
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 67
Re: Mother has multiple myeloma - 6 weeks diagnosed and not
The dialysis is not always required indefinitely.
In my case, I discovered multiple myeloma 9 years ago when I went into by renal failure. I did have several days of dialysis at that time, but that was enough to stabilize the kidneys and I have not needed it since.
Pat
In my case, I discovered multiple myeloma 9 years ago when I went into by renal failure. I did have several days of dialysis at that time, but that was enough to stabilize the kidneys and I have not needed it since.
Pat
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BuffaloPat - Name: Pat
- When were you/they diagnosed?: 2003
- Age at diagnosis: 51
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