My brother was diagnosed two months ago with multiple myeloma. Very quickly since then, his ability to eat has gone down hill. Can only eat a little in the morning. As the day progresses, food tastes worse and worse. Can only eat shakes or liquid type food.
It seems this is not common. Does anyone have experience with this?
He is now in treatment but still cannot eat much and also throws up occasionally. Doctors want to do scopes on throat and stomach but we feel that will be VERY hard on him. So looking for ideas.
Thanks
Forums
Re: Difficulty eating - have others had this problem?
Each time my daughter goes through treatment, her taste buds are affected. She just picks at food and mostly sticks to bland foods, like mashed potatoes.
Re: Difficulty eating - have others had this problem?
Adrian,
Eating became a real challenge for me about three months into my treatment with Velcade and dexamethasone three years ago after my initial diagnosis. What you describe with your brother sounds very similar to what I and many others experienced.
I usually eat pretty healthy food but on occasion eat things like pizza at outings, which would taste like cardboard for example. I started getting strange cravings for things like salt and vinegar potato chips. If I tried to force myself to eat, I would get sick and throw up. Eventually I could go days without feeling any hunger and not eating.
What helped during this time frame was drinking Ensure, which is a liquid food kind of like a shake much like your brother can only eat now. Ensure kept me going and other Beacon contributors have said the same. I had to force it down at times, but at least I did not throw it up. I found I could drink about two a day.
My doctors never wanted to scope my stomach or throat. As I remember, the loss of appetite was attributed to the Velcade and was not considered unusual. I do not know what your brother’s case is, so I am not making any recommendations not to do what his doctors want to do, and I am not an MD to begin with. I had to stop Velcade use because of significant peripheral neuropathy, and dexamethasone was stopped as well. The loss of appetite continued well after I stopped Velcade.
My height is 6’1 and I started out at 210 lbs (95 kg) when the loss of appetite started occurring. About three months later, when I went in for my stem cell transplant, I was 156 lbs (71 kg), having lost just over 50 lbs (23 kg). I can say at this point I was worried about how much weight I had lost and the challenges I was having eating any food. I felt that, if the situation did not change, I could very well waste away and die from malnutrition instead of myeloma.
When I was in the hospital for my stem cell transplant, I was being feed through my IV because I could not eat. Apparently this is not unusual. I was delayed from being released from the hospital because I was not eating, which was unusual. I could have been released earlier if I was eating solid food. Eventually, my appetite came back, and I could eat some, so I was released. In the weeks following the stem cell transplant, food taste eventually came back completely as well as my appetite.
I have read many other Beacon contributors' experiences with loss of appetite and weight loss during their treatment, so it is not uncommon. In my case, it was a more severe a problem than most. I have not heard of anyone yet who lost more weight than I did.
If there is any upside to this, I went back to cycling a few months after the stem cell transplant and, being about 30 lbs (14 kg) lighter at this time, it made a big difference in my athletic performance.
Eating became a real challenge for me about three months into my treatment with Velcade and dexamethasone three years ago after my initial diagnosis. What you describe with your brother sounds very similar to what I and many others experienced.
I usually eat pretty healthy food but on occasion eat things like pizza at outings, which would taste like cardboard for example. I started getting strange cravings for things like salt and vinegar potato chips. If I tried to force myself to eat, I would get sick and throw up. Eventually I could go days without feeling any hunger and not eating.
What helped during this time frame was drinking Ensure, which is a liquid food kind of like a shake much like your brother can only eat now. Ensure kept me going and other Beacon contributors have said the same. I had to force it down at times, but at least I did not throw it up. I found I could drink about two a day.
My doctors never wanted to scope my stomach or throat. As I remember, the loss of appetite was attributed to the Velcade and was not considered unusual. I do not know what your brother’s case is, so I am not making any recommendations not to do what his doctors want to do, and I am not an MD to begin with. I had to stop Velcade use because of significant peripheral neuropathy, and dexamethasone was stopped as well. The loss of appetite continued well after I stopped Velcade.
My height is 6’1 and I started out at 210 lbs (95 kg) when the loss of appetite started occurring. About three months later, when I went in for my stem cell transplant, I was 156 lbs (71 kg), having lost just over 50 lbs (23 kg). I can say at this point I was worried about how much weight I had lost and the challenges I was having eating any food. I felt that, if the situation did not change, I could very well waste away and die from malnutrition instead of myeloma.
When I was in the hospital for my stem cell transplant, I was being feed through my IV because I could not eat. Apparently this is not unusual. I was delayed from being released from the hospital because I was not eating, which was unusual. I could have been released earlier if I was eating solid food. Eventually, my appetite came back, and I could eat some, so I was released. In the weeks following the stem cell transplant, food taste eventually came back completely as well as my appetite.
I have read many other Beacon contributors' experiences with loss of appetite and weight loss during their treatment, so it is not uncommon. In my case, it was a more severe a problem than most. I have not heard of anyone yet who lost more weight than I did.
If there is any upside to this, I went back to cycling a few months after the stem cell transplant and, being about 30 lbs (14 kg) lighter at this time, it made a big difference in my athletic performance.
Last edited by Eric Hofacket on Mon Feb 09, 2015 5:38 pm, edited 1 time in total.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Difficulty eating - have others had this problem?
Hi,
Hope things go better for you, I was treated with thalidomide and dex for 10 months and during that time I lost over 50 lbs (23 kg). I weighed about 200 lbs (91 kg) and was down to around 140 lbs (64 kg) when I was able to get off the meds.
I, too, had the experience of things tasting like cardboard. About the only things that tasted normal were sweet things like cake, pie, cookies, and ICE CREAM. The other stuff I had to try and force down,
I have read that being overweight at the time you are diagnosed with multiple myeloma is one time that it is an advantage, as survival is enhanced by this. One thing to watch out for is, when you start recovering, cut back on the sweets, as my weight zoomed up to levels I had never reached before. I now weigh about 230 lbs (104 kg) – not great, but I guess one could put a happy face
on this and consider it a reserve supply in case of relapse.
One thing I forgot to mention (reread your post) is that I was 5' 11' (1.80 m) and, after the destruction of my spine by multiple myeloma, I am now 5' 7" (1.70 m) in height. Some of my height loss was prior to the multiple myeloma eposide, but most came after:
Hope things go better for you, I was treated with thalidomide and dex for 10 months and during that time I lost over 50 lbs (23 kg). I weighed about 200 lbs (91 kg) and was down to around 140 lbs (64 kg) when I was able to get off the meds.
I, too, had the experience of things tasting like cardboard. About the only things that tasted normal were sweet things like cake, pie, cookies, and ICE CREAM. The other stuff I had to try and force down,
I have read that being overweight at the time you are diagnosed with multiple myeloma is one time that it is an advantage, as survival is enhanced by this. One thing to watch out for is, when you start recovering, cut back on the sweets, as my weight zoomed up to levels I had never reached before. I now weigh about 230 lbs (104 kg) – not great, but I guess one could put a happy face
on this and consider it a reserve supply in case of relapse.One thing I forgot to mention (reread your post) is that I was 5' 11' (1.80 m) and, after the destruction of my spine by multiple myeloma, I am now 5' 7" (1.70 m) in height. Some of my height loss was prior to the multiple myeloma eposide, but most came after:
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Difficulty eating - have others had this problem?
I agree with Eric. Ensure is a very helpful product to try. And you can also add ice cream to the Ensure to make milkshakes.
At the time that my husband started treatment, he was very unwell, and just didn't even know to eat. But he would drink Ensure. And it was really important for him because treatment made him ill if he did not get some nourishment. He was on Cytoxan / Velcade only. No dex.
Definitely get him the Ensure. Some people don't like it a lot. The ice cream helps that. So can mixing it with a little milk.
At the time that my husband started treatment, he was very unwell, and just didn't even know to eat. But he would drink Ensure. And it was really important for him because treatment made him ill if he did not get some nourishment. He was on Cytoxan / Velcade only. No dex.
Definitely get him the Ensure. Some people don't like it a lot. The ice cream helps that. So can mixing it with a little milk.
Re: Difficulty eating - have others had this problem?
Thank you all for your responses. It is helpful to hear others have gone through similar and rebounded. Thank you
Re: Difficulty eating - have others had this problem?
I was diagnosed in 2012. At the time I weighed 186 lbs (84 kg) at 5'5" (1.65 m) tall. My appetite suffered from the effects of chemo. I now weigh 146 lbs (66 kg). My appetite is really good, but way back when I was first diagnosed, I could not eat. I had frequent bouts of nausea and vomiting.
But now, even though I am still on Velcade / dex treatment, my appetite is still good. Weight is still at 146 and feel like I just can't eat as much food. I enjoy brothy soups the most. Cannot tolerate beef or heavy spices.
Ensure was a life saver for awhile. But it caused a lot of diarrhea.
Hope this was helpful to you and pray that his appetite returns soon. It's a process of elimination. Try some varieties of foods and you will come upon the best flavors and comfort it provides. I ended up loving chicken broth and chicken with noodles soup. Crackers, ginger ale, and graduated to mashed potatoes with macaroni and cheese.
You'll be surprised what works.
But now, even though I am still on Velcade / dex treatment, my appetite is still good. Weight is still at 146 and feel like I just can't eat as much food. I enjoy brothy soups the most. Cannot tolerate beef or heavy spices.
Ensure was a life saver for awhile. But it caused a lot of diarrhea.
Hope this was helpful to you and pray that his appetite returns soon. It's a process of elimination. Try some varieties of foods and you will come upon the best flavors and comfort it provides. I ended up loving chicken broth and chicken with noodles soup. Crackers, ginger ale, and graduated to mashed potatoes with macaroni and cheese.
You'll be surprised what works.
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Concetta - Name: Concetta Mancuso
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2012
- Age at diagnosis: 68
Re: Difficulty eating - have others had this problem?
As others have said, I too had problems eating. When I was diagnosed, I was a bit overweight at around 215 lbs (98 kg) at 5'10" (1.78 m). During my initial treatment with Velcade and dex, I dropped down to about 165 lbs (75 kg) due to the same reasons everyone is mentioning. When I had my transplant, I dropped more weight down to about 135 lbs (61 kg). (So Eric, I got ya beat! LOL!)
I was even readmitted to the hospital twice after initial release because of dehydration and malnutrition. I was a mess for sure.
All I heard from my doctors was "eat, eat, eat". Now all I hear from them is "You could stand to lose a few pounds". Lol!
My point is, as others have stated, it WILL get better. It just takes a while and the Ensure shakes are literally a lifesaver. They even make it now in a juice form.
I was even readmitted to the hospital twice after initial release because of dehydration and malnutrition. I was a mess for sure.
All I heard from my doctors was "eat, eat, eat". Now all I hear from them is "You could stand to lose a few pounds". Lol!
My point is, as others have stated, it WILL get better. It just takes a while and the Ensure shakes are literally a lifesaver. They even make it now in a juice form.
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Guitarnut - Name: Scott Hansgen
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 47
Re: Difficulty eating - have others had this problem?
Hi Adrian,
Has your brother been receiving treatment? Has his condition improved?
I'm a little late to the conversation, but my mother had the same issue. Not only loss of appetite, but the inability to swallow solid food. We pursued every avenue with ENT and GI doctors and all said there is nothing wrong with her ability to eat and swallow food.
Only after she had started multiple myeloma treatment did her issue resolve itself and she is back to eating normally. I raised the issue back in this Beacon thread:
"Swallowing and speech problems from multiple myeloma" (started Feb 2, 2015)
Best wishes for your brother!!
Regards,
Linda
Has your brother been receiving treatment? Has his condition improved?
I'm a little late to the conversation, but my mother had the same issue. Not only loss of appetite, but the inability to swallow solid food. We pursued every avenue with ENT and GI doctors and all said there is nothing wrong with her ability to eat and swallow food.
Only after she had started multiple myeloma treatment did her issue resolve itself and she is back to eating normally. I raised the issue back in this Beacon thread:
"Swallowing and speech problems from multiple myeloma" (started Feb 2, 2015)
Best wishes for your brother!!
Regards,
Linda
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lindahyemoog - Name: Linda
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: Dec 2014
- Age at diagnosis: 87
Re: Difficulty eating - have others had this problem?
Adrian: Hope eating is more normal by now. Just adding this response for later readers.
My wife went through stem cell transplant preparation with cycles of Velcade (2x per week for 2 weeks), dex on day of and 1 day after Velcade, with daily doses of Revlimid during the 2 week cycle (then 1 week off). Her desire for eating also decreased and I felt I was failing as a caregiver. Could not get her to eat veggies, balanced diet, etc. She just wanted mac & cheese, Oreo cookies, sometimes cereal in morning, and a glass of wine at night. During discussions in a support group, I was told by nurses to continue suggesting balanced small meals, but to just go with it. If all my wife wanted was mac & cheese, she was getting protein, calories and carbs.
She is now transplant + 21 days. Like Eric, everything is going great, but she does not want to eat anything! Not even Oreo cookies or mac & cheese. She would have been released from the hospital to go home about 3 days ago except for her lack of eating. Haven't found the magic food yet. If we do, I'll post what it is.
My wife went through stem cell transplant preparation with cycles of Velcade (2x per week for 2 weeks), dex on day of and 1 day after Velcade, with daily doses of Revlimid during the 2 week cycle (then 1 week off). Her desire for eating also decreased and I felt I was failing as a caregiver. Could not get her to eat veggies, balanced diet, etc. She just wanted mac & cheese, Oreo cookies, sometimes cereal in morning, and a glass of wine at night. During discussions in a support group, I was told by nurses to continue suggesting balanced small meals, but to just go with it. If all my wife wanted was mac & cheese, she was getting protein, calories and carbs.
She is now transplant + 21 days. Like Eric, everything is going great, but she does not want to eat anything! Not even Oreo cookies or mac & cheese. She would have been released from the hospital to go home about 3 days ago except for her lack of eating. Haven't found the magic food yet. If we do, I'll post what it is.
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RobertEMaul - Name: Robert Maul
- Who do you know with myeloma?: Wife
- When were you/they diagnosed?: Nov. 18, 2015
- Age at diagnosis: 67
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