I've searched this forum and could not find any info or patient experiences like this, so I wanted to share it.
My 87-year old mother was diagnosed in late 2014 with multiple myeloma and was nearly on her death bed. Some of her symptoms, beyond the usual ones, were the inability to swallow solid food and slightly slurred speech. She lost an alarming amount of weight. Her throat felt like there was an obstruction. We were told these were not associated with myeloma. We had her examined by a GI doctor, ear, nose, and throat specialist (ENT), and two speech language therapists, who all said there is nothing wrong with her other than the myeloma.
I even asked our oncologist who specializes in multiple myeloma if he had seen cases of myeloma where people have swallowing issues. He said, "No".
We had reached a dead end trying to find an answer, but then, once she had started her chemo treatment of Velcade and dexamethasome, after only 2 treatments, the swallowing was about 90% back to normal and her speech was 100% back to normal.
I wanted to write this post to illustrate that (1) multiple myeloma does cause these effects and (2) it's obvious to me that multiple myeloma can cause underlying effects that even myeloma experts are unaware of or haven't seen before.
Forums
8 posts
• Page 1 of 1
-
lindahyemoog - Name: Linda
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: Dec 2014
- Age at diagnosis: 87
Re: Swallowing and speech problems from multiple myeloma
Thank you for your posting, Linda.
When I read your mother's story, I had two reactions.
First, the slurred speech you said your mother had made me wonder if perhaps this was due to her blood being too thick ("hyperviscous") from all the monoclonal proteins in it at the time of her diagnosis. Sometimes, when a myeloma patient is newly diagnosed with advanced disease, their blood is so thick that it causes cognitive and nervous system side effects, such as mentioned here:
"Husband newly diagnosed after suffering delirium," forum disc. started Jun 28, 2013
My second reaction to what you wrote was that I don't recall ever having heard of swallowing difficulties being a symptom when someone is first diagnosed with multiple myeloma. That problem mainly seems to come up in people who have just had a stem cell transplant. The high-dose melphalan given prior to a transplant can cause the mucous membranes in the throat to become inflamed.
What I found when I searched the forum, however, is that you'll find cases of swallowing difficulties mentioned outside the transplant setting in people whose myeloma has advanced quite a bit, often to the (obviously very unfortunate) point where the disease is no longer responding to treatment. I don't know what causes the swallowing problem in this situation, but perhaps it also has something to do with the blood being too thick. Perhaps, when the blood is so thick, it is difficult for mucous membranes in the throat to get enough nourishment, causing them to get inflamed?
In any case, thanks again for the information you shared with all of us. I hope your mother is responding well to her treatment and that she's not experiencing any serious side effects from it.
When I read your mother's story, I had two reactions.
First, the slurred speech you said your mother had made me wonder if perhaps this was due to her blood being too thick ("hyperviscous") from all the monoclonal proteins in it at the time of her diagnosis. Sometimes, when a myeloma patient is newly diagnosed with advanced disease, their blood is so thick that it causes cognitive and nervous system side effects, such as mentioned here:
"Husband newly diagnosed after suffering delirium," forum disc. started Jun 28, 2013
My second reaction to what you wrote was that I don't recall ever having heard of swallowing difficulties being a symptom when someone is first diagnosed with multiple myeloma. That problem mainly seems to come up in people who have just had a stem cell transplant. The high-dose melphalan given prior to a transplant can cause the mucous membranes in the throat to become inflamed.
What I found when I searched the forum, however, is that you'll find cases of swallowing difficulties mentioned outside the transplant setting in people whose myeloma has advanced quite a bit, often to the (obviously very unfortunate) point where the disease is no longer responding to treatment. I don't know what causes the swallowing problem in this situation, but perhaps it also has something to do with the blood being too thick. Perhaps, when the blood is so thick, it is difficult for mucous membranes in the throat to get enough nourishment, causing them to get inflamed?
In any case, thanks again for the information you shared with all of us. I hope your mother is responding well to her treatment and that she's not experiencing any serious side effects from it.
Re: Swallowing and speech problems from multiple myeloma
Here is a short differential, to mull over.
You describe dysarthia and dysphagia.
Given your Mom's age, I would suspect vascular causes ( lacunar strokes) or a plasmacytoma having a mass effect on a vagus nerve/ nearby nerve distribution. ?
Ie. Has her tumor shrunk following chemo ?
87 is a full lifetime. Maybe she is ready....and a bit depressed?.
It is also possible her salivary glands are not functioning well. Sips of water ?
Good luck.
You describe dysarthia and dysphagia.
Given your Mom's age, I would suspect vascular causes ( lacunar strokes) or a plasmacytoma having a mass effect on a vagus nerve/ nearby nerve distribution. ?
Ie. Has her tumor shrunk following chemo ?
87 is a full lifetime. Maybe she is ready....and a bit depressed?.
It is also possible her salivary glands are not functioning well. Sips of water ?
Good luck.
-
Rneb
Re: Swallowing and speech problems from multiple myeloma
I had hyperviscocity when I was diagnosed and did not have swallowing issues. I had some nerve issues from it, but it was more like numbness and pain in the hands and feet and shaky hands.
-
Anonymous
Re: Swallowing and speech problems from multiple myeloma
I had an auto stem cell transplant in 2012 for AL amyloidosis at the age of 40, previously healthy. Now I have multiple myeloma and, given my age and the fact that I already had an auto transplant, I am waiting for a donor to do an allo transplant.
I definitely noticed a change in my swallowing after the auto transplant. I hadn't heard about it before that, but my own experience is unmistakable.
At least once a day I choke when I'm drinking fluids. It's just like accidentally getting a tiny drop "going down the wrong way". But this happens at least once a day, usually more.
Before the transplant, that was a rare issue.
I know that, in AL amyloidosis, light chains can deposit in the mucous membranes on the throat causing problems, but then you would think I would have had this problem before my transplant as well as after. Instead, I only started after the transplant.
Makes me think I'm at risk for aspiration pneumonia.
I definitely noticed a change in my swallowing after the auto transplant. I hadn't heard about it before that, but my own experience is unmistakable.
At least once a day I choke when I'm drinking fluids. It's just like accidentally getting a tiny drop "going down the wrong way". But this happens at least once a day, usually more.
Before the transplant, that was a rare issue.
I know that, in AL amyloidosis, light chains can deposit in the mucous membranes on the throat causing problems, but then you would think I would have had this problem before my transplant as well as after. Instead, I only started after the transplant.
Makes me think I'm at risk for aspiration pneumonia.
-
Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Swallowing and speech problems from multiple myeloma
I am currently struggling with losing sleep due to swallowing issues. I am only Stage 1. My ENT does not see anything wrong in the tests he has performed. However, I feel like a gland is pushing into my throat. It is worse on one side than the other.
Don't know what it means, but it does interrupt sleep.
Don't know what it means, but it does interrupt sleep.
-
mdeering - Name: Who me?
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 2015
- Age at diagnosis: 58
Re: Swallowing and speech problems from multiple myeloma
Hi Lindahyemoog, Wecome to the forum. I am glad to hear that your mother is responding well to treatment.
When I read your post, I wondered if her slurred speech and difficulty in swallowing could be due to having an enlarged tongue? This is a hallmark sign of amyloidosis, a related condition to myeloma.
I think that you have received excellent responses from other people posting too. Hyper viscosity of the blood is a very worrisome problem of untreated myeloma too.
When I read your post, I wondered if her slurred speech and difficulty in swallowing could be due to having an enlarged tongue? This is a hallmark sign of amyloidosis, a related condition to myeloma.
I think that you have received excellent responses from other people posting too. Hyper viscosity of the blood is a very worrisome problem of untreated myeloma too.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Swallowing and speech problems from multiple myeloma
Hi Linda,
My dad has had multiple myeloma for 5 years and now is nearing the end of his life. He hasn’t been on treatment for a few weeks. He was admitted to hospital 3 weeks ago with trouble breathing. The last 3 days he has had trouble swallowing like your mum, and trouble speaking clearly.
This is interesting to hear your experience and Cheryl’s offer that it could be the thickening of blood. I haven’t asked the haematologist as my mum has been in the hospital when he’s visited. So he has not had this before.
Good luck and I hope your mum isn’t in pain. Take care, Katie
My dad has had multiple myeloma for 5 years and now is nearing the end of his life. He hasn’t been on treatment for a few weeks. He was admitted to hospital 3 weeks ago with trouble breathing. The last 3 days he has had trouble swallowing like your mum, and trouble speaking clearly.
This is interesting to hear your experience and Cheryl’s offer that it could be the thickening of blood. I haven’t asked the haematologist as my mum has been in the hospital when he’s visited. So he has not had this before.
Good luck and I hope your mum isn’t in pain. Take care, Katie
-
kewt
8 posts
• Page 1 of 1