Velcade And Diarreah (Multiple Myeloma)

Was just wondering if anyone can share their experience. My dad has Multiple Myeloma, IGA - Stage III.  He has severe bone damage/lytic lesions in his pelvic area only. Started Velcade in December and his MM responded to it almost immediately. His IGA/cancer levels shot down and his blood levels have remained steady and continue to improve. (he is in the middle of his 3rd cycle). He is also on Decadron Steriods (demaxathasone) every other week.

His side effects were really not too bad... he has a little of the perph. neuropathy/tingling sometimes, and he would also have some bouts of quick diarreah, that would come & go. But for the past few weeks especially, he is having more and more diarreah. He even gets it during his two week breaks ("rest period").  It comes on really quick and sometimes he barely makes it to the bathroom. Also, it seems to be triggered by eating or drinking... He can be fine, and then eat dinner, or have a milkshake or some gatorade and then an hour later - boom. Sometimes he'll get it two or three times a day, and then on some days - nothing. (FYI - he does go "normal" by the way, so it's not like it's only diarreah or nothing). Now that he is having it more often, when he goes for his weekly treatments at the doctors, we make sure that they give him fluid IV/hydration to replenish him.

I just am nervous that the diarreah seems to have increased, and now is coming more often (too much i think) almost like clockwork. Aside from that, it's also making him miserable. I explained to the doctor yesterday that he's been getting more diarreah, she didnt seem to be very concerned, but i am. I just want to make sure they are not 'missing' something, or this could be a sign of bigger problems... diverticulitis (he has mild diverticulosus), colin issues, or a missed infection, etc.

 Again, to be clear... i'd day he has it at least 4 times a week, sometimes 2 or 3 times a day. (it's just kind of watery, etc - sorry if i'm grossing you out). And again, for the record, he does also go normal/solid. (sorry again).

Was just wondering from different people here -- is it common or uncommon to have that much frequent diarreah while on Velcade (and Dexamathasone). IS THIS NORMAL? Thanks so much, and wishing you only the best in your journeys.

Hi Deb Jr.,

I don't want to scare you, but if your dad has diverticular disease then he could be reacting to the dexamethasone.  I had this happen twice, and both times I ended up in hospital having to have a bowel resection.  Then, when attending a Myeloma conference here in Melbourne we asked one of the head specialists from Canada (I think) and he said that people who have had diverticular disease have weakened bowel tissue and by taking dex in the large doses that are used to treat MM, the bowel can become perforated!  Because my diverticular episodes had been years before I was diagnosed with MM, I had forgotten all about them and never mentioned to my oncologist that I had had this problem.  Finally, after the second bowel op, we stopped all dexamethasone and I've not had any of those problems since.  I think that it would really pay to check this out with an oncologist who really knows his stuff before anything really drastic happens to your dad.  Sorry to be the bearer of bad news, but hopefully if this is what is causing the problem, then stopping the dex should alleviate the problem.  Most of the MM drugs are done in conjunction with dex, but it doesn't mean that they HAVE to be done this way.  I have had Thalid., Velcade, and Revlimid all on their own without dex and they have worked just fine.  In fact, I've been on 10mg of Rev for almost 20 months now -- on its own without any dex, and the outcomes have been fantastic.  My blood work is great and I have never felt this good since I was diagnosed with MM. 

So do check it out -- and perhaps get him off of the dexamethasone!  Good luck Deb, please keep us posted as to how he goes.  Best wishes, Cath

On 3/14/2008 poppy/cath wrote:

Hi Deb Jr.,

I don't want to scare you, but if your dad has diverticular disease then he could be reacting to the dexamethasone.  I had this happen twice, and both times I ended up in hospital having to have a bowel resection.  Then, when attending a Myeloma conference here in Melbourne we asked one of the head specialists from Canada (I think) and he said that people who have had diverticular disease have weakened bowel tissue and by taking dex in the large doses that are used to treat MM, the bowel can become perforated!  Because my diverticular episodes had been years before I was diagnosed with MM, I had forgotten all about them and never mentioned to my oncologist that I had had this problem.  Finally, after the second bowel op, we stopped all dexamethasone and I've not had any of those problems since.  I think that it would really pay to check this out with an oncologist who really knows his stuff before anything really drastic happens to your dad.  Sorry to be the bearer of bad news, but hopefully if this is what is causing the problem, then stopping the dex should alleviate the problem.  Most of the MM drugs are done in conjunction with dex, but it doesn't mean that they HAVE to be done this way.  I have had Thalid., Velcade, and Revlimid all on their own without dex and they have worked just fine.  In fact, I've been on 10mg of Rev for almost 20 months now -- on its own without any dex, and the outcomes have been fantastic.  My blood work is great and I have never felt this good since I was diagnosed with MM. 

So do check it out -- and perhaps get him off of the dexamethasone!  Good luck Deb, please keep us posted as to how he goes.  Best wishes, Cath

Hi Cath - Thank you for your reply... dont worry about scaring me (i'm already scared).  I had read something about that somewhere -- so that was actually one of the things in my head. But just to clarify with you and make sure -- before his MM, he never had any bowel or stomach 'problems' -- i only found out about the Diver. by accident when we were trying to get him diagnosed and on his Abdominal / Pelvic Catscan - it just said listed on the report with the other stuff, something like 'mild sigmoid diverticulosus'.  (Not diverticulitits, just to be clear). I had heard that many people have diverticulosus (and don't know it) and that if it becomes diverticulitis, that is more serious.  Is this not correct?

Also, sorry - if you don't mind, could you kind of explain to me what a 'perforated' bowel is?  Or how you discovered it?  And then what would have to be done, etc? Did you have to have a surgery?  (my dad would absolutely die - he is petrified of hospitals and one of those old fashioned, anti-surgery people, etc).

 And i wonder if my dad is already past this point or if stopping thd Dex would help, or is it too late for that. I do like his doctor, and they have made strides so far with his cancer, but i also see how freaking busy they are at this place, and how things get 'missed' etc, which is why i am always researching / triple-checking every treatment & medicine they give him. And for her not even knowing about this fact i'd like to shake her, but unfortunately it would really be too difficult for my dad to switch places at this stage in the game. He's comfortable there, it's close to home, the nurses are good/gets good care, etc and he does like his doctor.

Now that i think about it more and retrace the steps... in the month of December, he was having Velcade treatments (but only had 1 week of Dex) - and just had a little Diarreah a day or two after treatments, once in a while. In January upon starting his 2nd cycle of Velcade, is when he started to take the Dex regularly, for 4 days, every other week. Was okay at first (just some diarreah once in a while, usually a few days after the Velcade treatment) but it's more in February and really March especially that the diarreah has increased, which i think makes sense to the Dex theory!! Jesus...

One more thing Cath, i also heard/read that symptoms of a perforated bowel are high fever and nausea, and abdominal pain. He doesn't have any of that (just the diarreah) - i have asked him that repeatedly. If his stomach hurts, if he's bloated, etc -- and he's not. ???

Thank you so much for your information - i really appreciate it and your frankness.

Hi Deb--  I can understand why he doesn't want to change where he is being treated and if the doctor will listen to your concerns, then its not necessary to change.  My memories of the bowel perforations were as you stated -- pain that started in the early evening in the lower abdomen, then my temperature went up and the pain increased to the point where I could hardly walk from my chair to the toilet.  My husband called an ambulance 11:00pm and they carried me out of the house and took me to the hospital.  Once at the hospital the doctors did not know what was wrong -- and the pain just kept increasing until 2:00am when they decided to do an 'exploratory' operation.  When I was awake again they told me that the bowel had 'perforated' ( I took this to mean that the bowel had burst and that they had sewn up the tear).  The second time this happened -- several months later -- they told me that they had to 'resection' the bowel and remove the weakened portion.  After the second lot I ended up with several major abcesses, which I understand often happens to people with MM -- both had to be cut and drained, yuck!  The whole lot was very nasty, but since being off of dexamethasone I haven't had any further problems.  My understanding of diverticular disease is that diverticulitis is an active bout of the disease, where you have bloating pain and it only use to settle down for me with a round of antibiotics.  I was having diverticulitis so often (many years ago) that I seemed to be on new antibiotics every second week.  Then a dear old lady told me about Odourless Garlic Tablets.  She said that they were a 'natural' antibiotic and I decided to give them a try.  I have taken them now for over 15 years and during that time have not had another bout of diverticulitis -- which is why I completely forgot that I had ever even had diverticular problems.

This all seems a bit convoluted and I'm sorry, but when the Canadian doctor told us about the link between dex and diverticular disease it suddenly all made sense to us.  There were no real symptoms before the bowel actually perforated, then the pain was unbelievable and an operation was the only solution.  When I had recovered from the first lot, I went back to taking pulse dexamethasone -- big doses followed by a week or two of rest.  It wasn't long before the second perforation then occurred.  This time we knew what was happening so treatment happened pretty fast - a second operation. 

I don't remember having bowel problems before the bowel actually perforated.  All of the various side effects I suffered with all of the drugs -- vomiting, constipation, headaches, general aches and pains, bone pain, the list goes on and on and I can't/don't  remember even half of the awful things that went on during that first two years after diagnosis.  I just know that I was constantly sick from all of the meds and the radiation.

My suggestion would be to have a deep conversation with your oncologist and express your concerns regarding what might happen if he continues to have high doses of dexamethasone.  Hopefully the doctor will - with all of the knowledge he has regarding the patient -- be able to explain why it would or would not be necessary to take him off of dex.  Going from my own experience, there have been no further perforations since removing the dex and I would think that if I had gone off of it before the perforations happened then they probably wouldn't have occurred, because it was the dex that worked on the weakened bowel.  That's my understanding anyhow.  Have you googled this situation?  I'm not sure what you'd come up with, but surely there would be something.  I'll give it a try and let you know.  Take good care, Cath

Hi Deb--  I can understand why he doesn't want to change where he is being treated and if the doctor will listen to your concerns, then its not necessary to change.  My memories of the bowel perforations were as you stated -- pain that started in the early evening in the lower abdomen, then my temperature went up and the pain increased to the point where I could hardly walk from my chair to the toilet.  My husband called an ambulance 11:00pm and they carried me out of the house and took me to the hospital.  Once at the hospital the doctors did not know what was wrong -- and the pain just kept increasing until 2:00am when they decided to do an 'exploratory' operation.  When I was awake again they told me that the bowel had 'perforated' ( I took this to mean that the bowel had burst and that they had sewn up the tear).  The second time this happened -- several months later -- they told me that they had to 'resection' the bowel and remove the weakened portion.  After the second lot I ended up with several major abcesses, which I understand often happens to people with MM -- both had to be cut and drained, yuck!  The whole lot was very nasty, but since being off of dexamethasone I haven't had any further problems.  My understanding of diverticular disease is that diverticulitis is an active bout of the disease, where you have bloating pain and it only use to settle down for me with a round of antibiotics.  I was having diverticulitis so often (many years ago) that I seemed to be on new antibiotics every second week.  Then a dear old lady told me about Odourless Garlic Tablets.  She said that they were a 'natural' antibiotic and I decided to give them a try.  I have taken them now for over 15 years and during that time have not had another bout of diverticulitis -- which is why I completely forgot that I had ever even had diverticular problems.

This all seems a bit convoluted and I'm sorry, but when the Canadian doctor told us about the link between dex and diverticular disease it suddenly all made sense to us.  There were no real symptoms before the bowel actually perforated, then the pain was unbelievable and an operation was the only solution.  When I had recovered from the first lot, I went back to taking pulse dexamethasone -- big doses followed by a week or two of rest.  It wasn't long before the second perforation then occurred.  This time we knew what was happening so treatment happened pretty fast - a second operation. 

I don't remember having bowel problems before the bowel actually perforated.  All of the various side effects I suffered with all of the drugs -- vomiting, constipation, headaches, general aches and pains, bone pain, the list goes on and on and I can't/don't  remember even half of the awful things that went on during that first two years after diagnosis.  I just know that I was constantly sick from all of the meds and the radiation.

My suggestion would be to have a deep conversation with your oncologist and express your concerns regarding what might happen if he continues to have high doses of dexamethasone.  Hopefully the doctor will - with all of the knowledge he has regarding the patient -- be able to explain why it would or would not be necessary to take him off of dex.  Going from my own experience, there have been no further perforations since removing the dex and I would think that if I had gone off of it before the perforations happened then they probably wouldn't have occurred, because it was the dex that worked on the weakened bowel.  That's my understanding anyhow.  Have you googled this situation?  I'm not sure what you'd come up with, but surely there would be something.  I'll give it a try and let you know.  Take good care, Cath

Hi Deb ~~ Sorry that it printed my reply twice - I don't know how that happened.  Anyhow, I did look up dex on google and this is what I found at RxList - Internet Drug Index.  The site is actually: www.rxlist.com/cgi/generic/dexameth_ad.htm  and I copied this little bit:

Gastrointestinal: Abdominal distention, elevation in serum liver enzyme levels (usually reversible upon discontinuation), hepatomegaly, increased appetite, nausea, pancreatitis, peptic ulcer with possible perforation and hemorrhage, perforation of the small and large intestine (particularly in patients with inflammatory bowel disease), ulcerative esophagitis.

This was under contraindications of dexamethasone on page 3 of the site so you can have a look and read the lot if you want. Obviously it is well known to cause this problem in relation to people with bowel disease/divereticular disease etc.  I certainly wish that I had known about this beforehand!   I'm sure that there would be other sites with more info - this was just the first one I tried.  Good luck to you -- Cath

What is your Dad eating?  Perhaps it's more dietary?  The Brat diet has always worked well for me and certainly cannot hurt.  It's Bananas, Rice, Applesauce & Toast.  It may be the meds combining with the other things he's eating.  A few days focusing on these foods could help to determine of its meds, an underlying condition or just dietary.

Just a thought!  Hope it helps.

From Anna,

 Hi Deb Jr., My Dad has had MM for almost 10 years.  For the last few years he's had diarreah due to his treatments.  Unfortunately they have found nothing to stop his.  They have tried several things.  With some patients this just happens.  He was on a special diet once of no flour and sugar. Mom had to cook for him from scatch. That helped some but it got to be so much work for Mom that Dad finally stopped.  Sorry to be a downer about this.  Maybe they had find something that will work for your Dad.  I hope so.  

 Your friend,

Anna