Diarreah & Velcade - Pt. Ii... (Opinions/Info/Help Needed)

Hi all, i posted a couple of weeks ago about Velcade and diarreah. (For those reading this first time, my dad has Multiple Myeloma, IGA - Stage III. Lytic lesions and severe bone damage in hip/pelvic area. He gets Velcade treatments since December and his cancer has responded greatly to the treatments). Firstly, thanks to all who were kind enough to reply... Poppy/Cath, Anna and everyone else.

In continuing with the diarreah i mentioned in that original topic, needless to say that diareah is still there... at this point i'd call it 'chronic' and i think it is getting out of control. As i mentioned earlier, my dad gets weekly Velcade treatments and although i know diarreah can be a side effect, he definitely has a LOT more diarreah now, than he did 3 and 4 months ago. I'm wondering, could that just be that all the 'stuff' is really kicking in, taking more of a toll on his body now? That is one of the questions i'm raising, for anyone who could possibly shed some light. Another question, would this frequent diarreah cause him to lose weight? He is like a bag of bones... i would say lost about 10 to 20 pounds since before diagnosis. 

What i'm really scared of is that there could be some other, deeper issue that hasn't been caught yet?  What comes to mind, things like - Colitis, Crohns Disease, Irritable Bowel Sydrome, Diverticultis, etc. Also, i have heard a lot of talk lately about C-Diff infection. For the more knowledgeable, would it be possible for him to have that and not be discovered, even though they take blood every week? Also, if he did have the C-Diff infection, would he be 'sick' or able to functon? Just to paint a clearer picture, he does NOT have any stomach pain or discomfort, no 'gas' pains, no fevers and no blood in the stool. Just watery, crazy diarreah, that is really starting to take a toll on him and make him miserable. Sometimes, he will have it 3 to 4 times a day (like last night) and then other days, none at all.

At first, the doctors didnt think much of it (but then again, my dad is so not good at explaining such things in detail)... they suggested Immodium, etc and emphasized the importance of replenishing with water/fluids/gatorade. But at that time, they werent aware of how much he was getting it and so this past week, i gave the doctor the whole 411. She then dashed out to the floor, giving him 20 questions, etc, trying to assess/pinpoint a source. They had also wondered about a lactose intolorence issue - but it it possible to acquire that now, when you have not experienced that your whole life? They then added something to his treatment this week, it was a shot, actually (2 shots) - i think it was called Sandostatin, to help stop the diarreah. This was on Thursday. For all of Friday, he was okay but then in the middle of the night he was up four different times with it. :-(  Had a terrible night... Then for all day today & tonight, nothing - he's been okay.

Just for additional fyi... right before he was diagnosed, he had an abdominal/pelvic CT scan. On it (aside from the lesions and bone destruction) - it did say "Mild diverticulosus, without evidence of diverticulitis"  And also, "the colon seems normal in caliber". Since he was on Dexamathasone (Decadron Steriods) on & off the past few months, and also Prilosec for the past 5 months, i'm just wondering if that could have done something to his stomach or intestines. (Note to Cath: since we had that discussion, i had him stop taking the Dex immediately).

If anyone has experienced chronic diarreah with MM, especially while getting Velcade or on Dex - i would welcome your stories. Or if anyone out there has any thoughts or ideas [MM survivor, Cath, Anna, Kevin, etc] - please share, as i'm at my witts end. Thank you everyone for listening [long post, i know] and keep fighting the fight.

- a P.S. for Anna and Poppy/Cath... [see below]

Anna - wow, that's something that your dad has had MM for ten years. Seems we have really come a long way with this disease. God bless him. May i ask what Stage he was in when diagnosed? I know you said that the past few years your dad has had the diarreah due to his treatments and they haven't really been able to help him? Just wanted to ask you, how did they know it was from the treatments, and not a stomach, intestine or colon issue, etc? Did they investigate any of that? I truly sympathize with his (and your) dilemma. Also, if i may ask... did he lose weight from the diarreah? And about how often does he experience it?

Cath - you are a genius and an inspiration to all. I processed and researched further all the info about the Dex/weakend bowel tissue and the perforated bowel, etc. and compiled it for the next time i saw his doctor. Regardless, weeks ago, i had my dad to stop taking the Dex - just in case there was the slightest chance that could possibly happen with him, i didnt want to aggravate it or give it the slightest chance to develop any further. Unfortunately though, he hasn't taken the steriods in about 3 to 4 weeks, but the diarreah is still there, just as active as it was. (I'd love to discuss further {dont want to take up any more room on this post!} - if you wouldn't mind, feel free to email me or i'd be happy to email you. i am:

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

). thanks!  :-)

Good Afternoon Debjr;

The only advice I can offer is to keep his potassium levels in the normal range. Diarhea tends to to lower those levels.

I have a banana each morning to keep my pot. in normal limits. However, when I was hospitalized they supplemented that with a potassium pill due to my diarhea from the chemo.

Additionally, he has to replenish the fluids he is losing. he must drink more.

Take care;

Kevin

Thank you Kevin. I had heard that about bananas, and we have told my dad to start eating them, but sometimes he's a pain-in-the-neck about stuff like that. I will definitely get on that. He's finally drinking more water than before, and now drinking Gatorade too -- although not as much as he should. (However, every week when he goes to the docs for his treatment, i make sure they give him the hyrdration fluids, etc to replenish).

Best of luck in your journey and wishing you positive energy.

Dear DebJr,

We know what you are saying.  My husband has Crohns and has had it since he was 25.  If Crohns isn't bad enough, add mm to the mix.  He suffers with diarrhea frequently and many new meds make it worse.  He is on revlimid and dexamethasone, but the diarrhea is about like it has always been.  One thing that he does is take lactaid, an over the counter enzime, whenever he eats dairy products.  It really helps. 

He eats very little in the way of raw fruits and vegies, as that will cause problems also.  He stays away from cream sauces and gravy.  Most all of his vegies and fruits are cooked.  He also stays away from peanuts and most other nuts he eats in extreme moderation.  Two things you might ask his doctor about are the meds dicyclomine (to calm his bowel) and lomotil to help control the diarrhea.  My husband has to take them on a daily basis.  Unlike your dad, my husband has cramping, gas and bloating along with his diarrhea. 

If his diarrhea continues, you might consider having a gastroenterologist take a look at him.  Another thing I have learned is to keep ALL of the doctors he sees in the loop.  Make sure all reports and findings are sent to every doctor he sees, so that they all know what has been done and what is going on.

Hope this helps.  Take care.

Jan (we'vebeen there)

 

Hi Jan, thanks much for your reply. Funny, I just bought him Lactaid yesterday. One of the nurses told us about it on Thursday. I told him to start/try one tomorrow, if he's going to eat anything even close to the 'dairy' family. I was doubtful at first, but i'm starting to maybe think that it is possible this is a lactose intolerent thing. I guess we will see with the Lactaid.

Someone had told us recently to stay away from chocolate candy, etc - but that something like chocolate SOY milk would be okay. Well, we bought him the soy milk (as a replacement for milk - he really misses having milk and hasn't had any in weeks, except for a drop in his tea/coffee) - but later that night was one of the worst diarreah nights ever - up 4 different times int he middle of the night. I'm also not sure if this was perhaps from the Velcade this week (it was two days after), but now i'm trying to keep track of everything closely to pinpoint a cause.

He was on the Dex (only on & off) for a few months, but is no longer. Stopped about a month ago. He was also on Prilosec for the past 5 months, but no longer on that as well. I guess we'll see what happens.

Yes, the GI think has entered my mind (and the dr's i think also) - but it's something i have to tread slowly with, re: my dad. Kind of old fashioned, not so informed, different generation, etc. - if he even hears the word 'colonoscopy' he would basically run for the hills, etc. One thing at a time.

Thanks so much for the info, i wish you & your husband all the best.

 

 

 

 

Hi Deb!  I'm with Kevin on this one -- keep up the potassium (using bananas is one of the easiest and best ways) and make sure that he is drinking up to 3 litres of water every day.  The water is by far the most important thing, and knowing that you have been living where it has been winter I can understand how difficult it is to drink that quantity every day, but it is a must!   My husband, Bob, suggests that you include Bran in his diet by sprinkling it on his cereal or toast every morning.  He finds that this works for him, though I have no experience of it myself.  The visit to the GI specialist is a good one, but how to convince him of it will be the hard part -- having a specialist check him out to rule out many of the more common things will be best for him -- perhaps putting it on the basis that this could reduce the attacks will help him come to at least making an appointment.  Don't talk about a colonoscopy -- after all the specialist might not suggest it (well, there's always a chance!) but in the end, if he does want to do one, your dad may take it more gracefully from the man himself rather than one of the family telling him that this is what he needs!  Good luck Deb -- you are a wonderful daughter and he is certainly blessed to have you helping him on his MM journey.  Best wishes to you both!! Love, Cath

 Dear DebJr,

 I'm new here but had I seen your message earlier I would have felt so much compassion for you and  your father.   My heart goes out to both of you like you can't imagine.  

My father's situation is very similar--Stage III, IgA, lytic lesions (diffuse and severe), only not to the pelvis but spine, and upwards.   I'm so sorry for what you are going through.  It is really hell, isn't it?

The reason I don't have better help for you regarding the diarrhea is because my father had constipation, probably because of the opiates he takes for his pain.    It drives him crazy.  

Is his doctor someone who communicates well and is easy to approach about these issues?    The doctor has to understand how serious the situation is.

Secondly, is your father on a combo treatment, such as Velcade plus Cyclophosphamide or a steroid or something else that might be contributing to this?

As you point out, it could be a secondary infection.  One thing that the clinic did for my father was put him on antibiotics.   As you might know, infections are one of the major difficulties MM patients face, along with kidney issues, anemia, hypercalcemia and spontaneous fractures.

(MM is a nasty disease.   I hate MM!)

I'm sorry I could not help more.   But I'll look into your question, because I spend a lot of time researching MM.  This would be something maybe I could explore and try to find some data on it.

Hugs to you and your father,

Michael

 

 

 

 

On 4/5/2008 DebJr wrote:

Hi all, i posted a couple of weeks ago about Velcade and diarreah. (For those reading this first time, my dad has Multiple Myeloma, IGA - Stage III. Lytic lesions and severe bone damage in hip/pelvic area. He gets Velcade treatments since December and his cancer has responded greatly to the treatments). Firstly, thanks to all who were kind enough to reply... Poppy/Cath, Anna and everyone else.

In continuing with the diarreah i mentioned in that original topic, needless to say that diareah is still there... at this point i'd call it 'chronic' and i think it is getting out of control. As i mentioned earlier, my dad gets weekly Velcade treatments and although i know diarreah can be a side effect, he definitely has a LOT more diarreah now, than he did 3 and 4 months ago. I'm wondering, could that just be that all the 'stuff' is really kicking in, taking more of a toll on his body now? That is one of the questions i'm raising, for anyone who could possibly shed some light. Another question, would this frequent diarreah cause him to lose weight? He is like a bag of bones... i would say lost about 10 to 20 pounds since before diagnosis. 

What i'm really scared of is that there could be some other, deeper issue that hasn't been caught yet?  What comes to mind, things like - Colitis, Crohns Disease, Irritable Bowel Sydrome, Diverticultis, etc. Also, i have heard a lot of talk lately about C-Diff infection. For the more knowledgeable, would it be possible for him to have that and not be discovered, even though they take blood every week? Also, if he did have the C-Diff infection, would he be 'sick' or able to functon? Just to paint a clearer picture, he does NOT have any stomach pain or discomfort, no 'gas' pains, no fevers and no blood in the stool. Just watery, crazy diarreah, that is really starting to take a toll on him and make him miserable. Sometimes, he will have it 3 to 4 times a day (like last night) and then other days, none at all.

At first, the doctors didnt think much of it (but then again, my dad is so not good at explaining such things in detail)... they suggested Immodium, etc and emphasized the importance of replenishing with water/fluids/gatorade. But at that time, they werent aware of how much he was getting it and so this past week, i gave the doctor the whole 411. She then dashed out to the floor, giving him 20 questions, etc, trying to assess/pinpoint a source. They had also wondered about a lactose intolorence issue - but it it possible to acquire that now, when you have not experienced that your whole life? They then added something to his treatment this week, it was a shot, actually (2 shots) - i think it was called Sandostatin, to help stop the diarreah. This was on Thursday. For all of Friday, he was okay but then in the middle of the night he was up four different times with it. :-(  Had a terrible night... Then for all day today & tonight, nothing - he's been okay.

Just for additional fyi... right before he was diagnosed, he had an abdominal/pelvic CT scan. On it (aside from the lesions and bone destruction) - it did say "Mild diverticulosus, without evidence of diverticulitis"  And also, "the colon seems normal in caliber". Since he was on Dexamathasone (Decadron Steriods) on & off the past few months, and also Prilosec for the past 5 months, i'm just wondering if that could have done something to his stomach or intestines. (Note to Cath: since we had that discussion, i had him stop taking the Dex immediately).

If anyone has experienced chronic diarreah with MM, especially while getting Velcade or on Dex - i would welcome your stories. Or if anyone out there has any thoughts or ideas [MM survivor, Cath, Anna, Kevin, etc] - please share, as i'm at my witts end. Thank you everyone for listening [long post, i know] and keep fighting the fight.

- a P.S. for Anna and Poppy/Cath... [see below]

Anna - wow, that's something that your dad has had MM for ten years. Seems we have really come a long way with this disease. God bless him. May i ask what Stage he was in when diagnosed? I know you said that the past few years your dad has had the diarreah due to his treatments and they haven't really been able to help him? Just wanted to ask you, how did they know it was from the treatments, and not a stomach, intestine or colon issue, etc? Did they investigate any of that? I truly sympathize with his (and your) dilemma. Also, if i may ask... did he lose weight from the diarreah? And about how often does he experience it?

Cath - you are a genius and an inspiration to all. I processed and researched further all the info about the Dex/weakend bowel tissue and the perforated bowel, etc. and compiled it for the next time i saw his doctor. Regardless, weeks ago, i had my dad to stop taking the Dex - just in case there was the slightest chance that could possibly happen with him, i didnt want to aggravate it or give it the slightest chance to develop any further. Unfortunately though, he hasn't taken the steriods in about 3 to 4 weeks, but the diarreah is still there, just as active as it was. (I'd love to discuss further {dont want to take up any more room on this post!} - if you wouldn't mind, feel free to email me or i'd be happy to email you. i am:

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

). thanks!  :-)

 

Dear Mike (and everyone!)

Thank you all for your thoughts & replies. I appreciated all the messages and read each one carefully.

Just wanted to pop back in and give everyone an update -- especially since you were all so kind to reply. I'm almost afraid to speak to soon, but it seems we have turned a corner with the chronic diarreah situation for my dad... it appears that this may have been a lactose intolerence problem! I was really starting to get worried about it being an underlying serious medical issue/complication, and i could tell my dad (who really has an unbelievably great attitude in general - a selfless trooper) was starting to go from frustrated to bitter and defeated over the situation. As another last resort, last weekend i bought him LACTAID tablets (one of the nurses had mentioned it recently at his place, as well as someone on this board). I really didn't expect much, but i told him to just give it a try. Well... he took one on sunday, no diarreah. Took one on Monday before eating a cheese sandwich, no diarreah. Kept taking one every day this week - still, no diarreah! He even had some ice cream two days in a row (pushing the envelope, i know - ha) - no diarreah. I think you get the picture.

Well, it's now been over a week and i'm thrilled to say -- nothing. (knock knock). I really think that somewhere along the road, with the occasional diarreah he was getting from his treatments, somehow, somewhere he developed a lactose intolerence issue. Not to say that i still won't keep a sharp eye on this, but after monitoring his habits closely, retracing steps and i think it's kind of obvious now. Regarding the 'infection' possibility, that is still always in the back of my head (as was, inflammatory bowel sydrome, colitis, c-diff and worse)... but other than the diarr., my dad did not -ever- have any of the other symptoms like abdominal pain, fever, blood in the stool, etc.

And [to answer from above] - yes, his doctor is the kind of person you can approve and open to discussion/suggestions. She is very 'light' - she's funny, always encouraging with her patients and has a very good bedside manner. That is what i like best about her. She really does not focus on the 'doom & gloom'. She says with her cute little Chinese accent, "Have to laugh - live longer"... My dad really doesn't know -anything- about his disease, other than that he has cancer that effects his bones. I am the communicator, the buffer, the go-to person, etc - and sometimes i think i drive his doctor next to nuts with all my questions and neurotics (or so you'd think) but she does not mind. She also doesn't get insecure or miffed at all when i suggest things or start guessing about his ailments, etc - i have heard stories of many doctors who do.

Mike, thanks for your reply and yes, your dad's situation sounds a lot like my dad's. I'm sorry sorry for him (and you) and all his pain. I relate to your pain as well. I hope things turn around for him - remember, they have before! And if they don't, i wish him as little pain as possible, positive energy and peace.

Thanks again everyone - i will update you if anything changes.(i hope i didnt speak to soon!)

DebJr. 

 

 

 

P.S. -

Back again... Michael, i forgot to answer - yes, my dad is on Velcade, and was also taking Dexamathasone (steriods) on & off for the past few months, but is no longer on the steriods. And thanks to our very wise and famous Cath on this board, i learned something very important about the Dex and people who have diverticular issues, that could have been invaluable and possibly life-saving.

I hate MM too, it is a horror show but we all have to stay on our toes. And you do have to speak and be persistent with things. Yes, at first, the doctor and others at the place were not taking the 'diarreah complaints' seriously enough i thought. (then again, if you know my dad, he does not 'complain' because he is too nice and polite, lol. if they would ask him, 'how's your pain?' {and meanwhile, it's excrutiating} - his response to them would be something like, 'well, okay. you know, what can you do?')... But then last week i pulled the doc aside and really elaborated so she 'got it', etc. If this had continued one more week, i would have asked for him/it to be checked out further, and for some kind of testing to be done. (and am opposed to that, if something changes). But for now - thank god for Lactaid!  And this board...