[jillsParticipant]

Hi everyone,

My Mum is just completing the first cycle of Revlimid(10mg for 21 days), Cyclophosphamide (500mg once a week) and Dex (20mg once a week) plus various anti nausea and anti fungal drugs and has had a couple of incidents of diarrhea – I was just wondering if anyone else has had this with Revlimid as she is convinced it is the 'horrible' tablets but it doesn't seem to be listed as one of the side effects and she hasn't had it all the time. I am concerned as she is 84 and so it is not a good side effect for her due to risk of dehydration.

I am going to speak to the hospital this week about it before she starts the next cycle but I wondered if anyone else had suffered this way?!

Thanks

Jillx

[avantrompParticipant]

Hello Jill
I have been on Revlimid for 3 years ( a low dose of 7.5 ). The only significant side effect for me has been diarrhea, unpredictable and a great nuisance. My specialist suggested I could try over-the-counter diarrhea suppressant containing loperamidehydrochloride. This really works for me. I take it seldom but it is good to know it is on hand.
I am 69.
Annette

[NettieParticipant]

Hi Jill
This is an interesting question as I have been on Revlimid + Dex since August last year and it has the opposite effect on me!
I started on 25mg of Revlimid for 21 days with 7 days rest + 40mg Dex on days 1 to 4 of each cycle. I am now on 15mg Revlimid for 21 days and 20mg of Dex for days 1 to 4 of each cycle. I have never taken Cyclophosphamide.
Having always been very 'regular' it was a worry when I suddenly could not 'go' for two or three days at a time and experienced bad tummy cramps. I tried to treat this naturally by eating more fruit and veg and drinking pints of water a day and that has helped but the drugs have never caused diarrhoea. Maybe the drugs affect people differently as does MM or maybe it is the Cyclophosphamide?
Whenever I have experienced diarrhoea in the past my GP has always prescribed loperamide it is very effective.
The first three cycles of Revlimid were not pleasant and I did have many of the side effects noted on the list but now the main side effect is fatigue but I do still have days when I am constipated.
I do hope your Mum is able to get some relief from the side effect she is experiencing – they are 'nasty' tablets but worth persevering with as, in my case at least, they do work as I am in remission once again.
Best wishes
Nettie x

[HelenParticipant]

Hi Jill
I've been on Revlimid now for nearly 2 years all told, each cycle makes me gradually constipated then it reverses and gives me terrible diarrhoea so I now try to control it by having lots of fibre for the first 2 weeks of the cycle, then back pedal a bit in the last week , but it doesn't always work! i get muscle pain and tiredness with it too.
Dehydration shouldn't be much of a problem if mum is managing the 3 litres a day as a routine.
Love Helen

[jillsParticipant]

Thank you Annette, Nettie and Helen for your replies. I am not convinced that the Revlimid is causing the problem, having spoken to the hospital they say it is not a common side effect, constipation is much more common which she did have with Thalidomide which is a similar drug. She does also have a bit of what I call emotional tummy! Anyway, she is due in for her bone strengthener infusion tomorrow and they are going to give her a good check up before deciding on the second cycle of treatment and doses (she finished the 21 days on Sunday). So it may be a short delay before she starts the next round as I know they have to order the Revlimid which can take a few days.
Helen, you are right about the fluid but I think she is unlikely to be drinking the full 3 litres despite my nagging!
It might be worth getting her some loperamide as well I think.
Thanks again,
Jillx

[VickiParticipant]

Hi Jill

Like Helen etc Colin had bouts of constipation and diahorrea. We were told that being constipated can cause a back up in the bowel that can then cause diahorrea when things become free! Too much information I know but it was clear that upset tummy after bouts of constipation. What they did was give him a light laxative to keep things regular 🙂

Sorry if too much info….Colin will thank me ha ha 🙂

Hope it helps!

Vicki and Colin

[jillsParticipant]

Thank you everyone for your responses. Mum went to the hospital yesterday for a check over and her Zometa. They did a number of blood tests, some of which will take a couple of days so they didn't give her another round of meds until they get these results to check no infections, dehydration or kidney problems. However, she is pretty anaemic again so has to go for a blood transfusion on Monday which should perk her up a bit. She has only started to suffer with anaemia in the last year so maybe this is an indication of the disease having more of an impact on the bone marrow function. Anyway, they say that diarrhoea is not a common side effect of Revlimid so they are not convinced it was the cause so I guess we will just see how the next cycle goes. Mum is quite emotional and doesn't like having all this treatment so I have to work hard to keep her positive – it is not a good place to be when you are 83, or indeed at any age.
Love,
Jillx

[jillsParticipant]

Hello everyone,

Just for anyone who is interested, my Mum, age 84, is now on her second cycle of Revlimid, Cyclophosphamide and Dex and yesterday her consultant told us that her light chains have already reduced by 25% (from 10,000 to 8,000) and PPs have dropped from 40 to 34. So a good result from the treatment so far which had made her feel more positive about all the tablet taking!

Sending all the best to everyone,

Jillx

[JentayParticipant]

Hi Jill,
Sorry to disagree with your mum's doctors but Revlimid does cause diarrhoea even if it isn't listed on the side-effects sheet (hmm, must check that!) I suffer from it periodically, especially after I finish a cycle, and I know that the Revlimid is the cause as I don't take anything else apart from Dex and a low-dose aspirin. (I'm on cycle 27 so I do have some experience of it!)

Get some Immodium from the chemist for your mum – I always keep the instant tablets in my bag just in case. That will sort it out.

Good to hear that it's working well for her, so do encourage her to keep on taking it. There's always something available to sort out any minor side-effects.

Jen

[jillsParticipant]

Jen,
Thanks – I am sure you are right about the diarrhoea side effect, but I do think in Mum's case it was largely emotional. Interestingly she has not had the problem at all so far in this second cycle (in fact rather the reverse!) and I think she is feeling more positive about it all having been told it is working well. She has always tended to suffer with a tummy that is sensitive to her emotions, apparently it is a very British thing as I was once told by a psychiatrist friend, due to our habit of trying to keep emotions under control with a stiff upper lip!
Take care,
Jill

[VickiParticipant]

Hi Jill

Glad to hear of your mums results…..I think all the meds contribute to bowel disruption of some kind…..constipation or other way. Colin was on revlimid, cyclophos and dex. He had a variety from constipation to tummy upsets. Apparently diahorrea can be as a result of being constipated, we were told, due to the bowel being less efficient and the 'deposits' backing up and not disposing properly.

Colin was given a laxative to take regularly to help avoids this problem 🙂

Hope this helps

Vicki and Colin

Ps sorry for so much detail 🙂

[raulstonParticipant]

Hi Jill

Just wanted 2 say i know just how u fill my dads 65 and on his second cycle after the velcaded failed. I hope all goes well 4 u and thats a great result, we get ours Tuesday. On reading this has made me fill so much more positive because that tablet well i agree with u

Take Care
Clair

[sandie58Participant]

Hi Jill
Haven't spoken for a while, but I am glad to hear your mum is doing so well on her treatment. I hope she continues to get better and better.
Take care.
love Sandie x:-)

[jillsParticipant]

Hi Sandie,

Thanks for the message, read your other messages and glad to hear your Mum is doing OK with all the tablet taking. My Mum starts her third cycle tomorrow, she is doing OK, still has a bit of a tummy upset now and again but I am not sure it is anything to do with the tablets really. She had to have another blood transfusion yesterday, a very long 12 hour day for her as there were delays with the hospital transport, but I actually think she quite enjoyed it, the staff and other patients in the unit are very friendly and she seems to spend the day chatting up all the men!
We next go back to the consultant in May so will see how she is getting on again then.
Love to you and your Mum,
Jillx

[jillsParticipant]

Hi Clair,

Glad my post was useful, Velcade didn't work very well for my Mum either. I hope your Dad will get a good result today from the Revlimid, do let us know how he gets on please?

Take care,
Jill

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