My Dad was diagnosed with multiple myeloma last month. His main problem is severe bloating of the stomach, so problematic that he is not able to sleep at night. I have not read of such symptoms at diagnosis. He started his first treatment 2 days back and his stomach problem was one of his problems led to the diagnosis.
Is it common to have these sorts of stomach problems / bloating when diagnosed with multiple myeloma?
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Re: Severe stomach bloating at time of diagnosis
My husband was recently diagnosed and just finished his second week of treatment. He is having issues with bloating, but I am not sure if it is the multiple myeloma or how he is trying to cope with some of the symptoms.
Before his treatment and actual diagnosis, he had an extreme lack of energy. To try to cope with that, he ate constantly, trying to get some energy which caused him to bloat. Now that he has started treatment, it seems to be worse because of the dexamethasone and then his crash. He eats constantly because of the feeling and shakiness from the dex and then when he crashes from it, he eats constantly trying to get energy. It's one big continuous round.
He has developed heartburn and acid reflux recently because of the constant eating and bloating. I don't know if this has happened to anyone else, but if anyone has solutions I would love to hear some suggestions. He does walk about 5 miles a day to try to get rid of the shakiness, but it doesn't seem to help, nor can he sleep.
Before his treatment and actual diagnosis, he had an extreme lack of energy. To try to cope with that, he ate constantly, trying to get some energy which caused him to bloat. Now that he has started treatment, it seems to be worse because of the dexamethasone and then his crash. He eats constantly because of the feeling and shakiness from the dex and then when he crashes from it, he eats constantly trying to get energy. It's one big continuous round.
He has developed heartburn and acid reflux recently because of the constant eating and bloating. I don't know if this has happened to anyone else, but if anyone has solutions I would love to hear some suggestions. He does walk about 5 miles a day to try to get rid of the shakiness, but it doesn't seem to help, nor can he sleep.
Re: Severe stomach bloating at time of diagnosis
In my Dad's case, he was eating very little before diagnosis because of his stomach discomfort and lack of appetite. His lack of appetite and stomach bloating remains after diagnosis and the start of the treatment.
Re: Severe stomach bloating at time of diagnosis
Hi Caryraleigh,
I will comment in the context of there being stomach bloating at the time of diagnosis and before any myeloma drug treatment started.
Was your dad tested for amyloidosis? Amyloidosis is not that uncommon in multiple myeloma patients and can present with abdominal bloating. If he had a bone marrow biopsy, they should have run what is known as a Congo red stain test to look for that condition. Otherwise, there are some other biopsy tests that they can do to look for that condition.
Also, did your dad have a PET/CT scan when he was first diagnosed? If not, getting one might be a good idea to rule out any extramedullary disease (specifically, any myeloma tumors outside of the skeleton). Xrays don't necessarily pick up on extramedullary disease in soft tissues.
I will comment in the context of there being stomach bloating at the time of diagnosis and before any myeloma drug treatment started.
Was your dad tested for amyloidosis? Amyloidosis is not that uncommon in multiple myeloma patients and can present with abdominal bloating. If he had a bone marrow biopsy, they should have run what is known as a Congo red stain test to look for that condition. Otherwise, there are some other biopsy tests that they can do to look for that condition.
Also, did your dad have a PET/CT scan when he was first diagnosed? If not, getting one might be a good idea to rule out any extramedullary disease (specifically, any myeloma tumors outside of the skeleton). Xrays don't necessarily pick up on extramedullary disease in soft tissues.
Last edited by Multibilly on Sat Feb 11, 2017 3:19 pm, edited 4 times in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Severe stomach bloating at time of diagnosis
Hi MrsWrench,
There's a discussion about bloating during myeloma treatment in this forum thread:
https://myelomabeacon.org/forum/severe-bloating-revlimid-velcade-dexamethasone-rvd-t2139.html
A couple of the posts in the thread have suggestions that you may find helpful.
Revlimid seems to be a common source of gastrointestinal issues, whether it's taken alone or in combination with other drugs. There are a lot of discussions here in the forum about how to deal with the various GI-related side effects of treatments. This link will take you to a list of some of them:
https://myelomabeacon.org/forum/search.php?keywords=diarrhea+constipation+stomach+digestion+digestive+GI+bowel+bowels+gastrointestinal&terms=any&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search
The link is one of a number of useful links in this post,
https://myelomabeacon.org/forum/links-existing-forum-discussions-t3780.html
which is pinned to the top of the "Treatments & Side Effects" part of the forum.
Good luck!
There's a discussion about bloating during myeloma treatment in this forum thread:
https://myelomabeacon.org/forum/severe-bloating-revlimid-velcade-dexamethasone-rvd-t2139.html
A couple of the posts in the thread have suggestions that you may find helpful.
Revlimid seems to be a common source of gastrointestinal issues, whether it's taken alone or in combination with other drugs. There are a lot of discussions here in the forum about how to deal with the various GI-related side effects of treatments. This link will take you to a list of some of them:
https://myelomabeacon.org/forum/search.php?keywords=diarrhea+constipation+stomach+digestion+digestive+GI+bowel+bowels+gastrointestinal&terms=any&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search
The link is one of a number of useful links in this post,
https://myelomabeacon.org/forum/links-existing-forum-discussions-t3780.html
which is pinned to the top of the "Treatments & Side Effects" part of the forum.
Good luck!
Re: Severe stomach bloating at time of diagnosis
I've been diagnosed with multiple myeloma and am currently on an anti-viral and dexamethasone. I will start Revlimid and Velcade next week, along with Zometa.
I have had chronic stomach bloating for some time, as well as other GI problems such as irritable bowel syndrome (IBD), and have had un/misdiagnosed (fibromyalgia) multiple myeloma along that time frame. I do not have amyloidosis or extramedullary disease as far as we know.
I also was overeating - both because of lack of energy and because when you're in severe pain chocolate helps
Just in the 2 weeks since adequate pain management started I have lost 7 pounds. I am not trying to lose weight, it's just that I am not sitting in the recliner in excruciating pain eating Hershey kisses. The dexamethasone hasn't given me an appetite yet, but I am having gastric reflux pretty severe. I'm currently taking the 'normal' dose of dex each day, not the megadose I will start next week.
I have had chronic stomach bloating for some time, as well as other GI problems such as irritable bowel syndrome (IBD), and have had un/misdiagnosed (fibromyalgia) multiple myeloma along that time frame. I do not have amyloidosis or extramedullary disease as far as we know.
I also was overeating - both because of lack of energy and because when you're in severe pain chocolate helps
Just in the 2 weeks since adequate pain management started I have lost 7 pounds. I am not trying to lose weight, it's just that I am not sitting in the recliner in excruciating pain eating Hershey kisses. The dexamethasone hasn't given me an appetite yet, but I am having gastric reflux pretty severe. I'm currently taking the 'normal' dose of dex each day, not the megadose I will start next week.-
judimcbry - Name: Judi
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2017 delayed
- Age at diagnosis: 52
6 posts
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