[JaveajamesParticipant]

Hi everyone, i know that several people in the past have mention this topic under treatment, but thought that i should start again. I am on revlimid 25m and find dealing with constipation quite difficult. I eat lots of fruit and fibre and take Duphalac, a glactose product recommended by my consultant. However this is not enough and i have to keep purging myself with senna, which is quite aggressive which I am unhappy about. Does anyone use anything that works well for them?
James

[janwParticipant]

Hi James

I know how you feel. Unfortunately the myeloma drugs, including Revlimind, can cause constipation (see Myeloma UK factsheet on constipation). I suffered with severe constipation during my myeloma treatment with CDT, especially during the third and fourth cycles. My regular use of pain killers for a collapsed vertebrae also contributed to the constipation problems, together with reduced exercise due to fatigue, back/rib pain and lack of appetite due to nausea. I asked my chemo nurse for advice, but she just advised me to ensure I was drinking the required 2 – 3 litres of liquid per day. Like you, I tried eating extra fruit, fibre and drinking as much liquid as possible but nothing appeared to work apart from Senna every three days. At one stage, I was munching through nuts, seeds, prunes, prune juice and avoiding caffeine, but without any results!

Perhaps your consultant/GP can prescribe a different type of laxative? I was prescribed sachets of Movicol which works by softening the stools and producing quite a liquid stool, but appeared on many occasions to give me absolutely no notice of movement resulting in several accidents which were embarrassing. However, some of my relatives and friends regularly use this medication for their constipation with good results. I tried taking Omega 3 and fibre supplements without success, but I then tried taking a combined multi-vitamin tablet with probiotics which seemed to work for me.

Regards Jan

[JohnoParticipant]

I have suffered really badly in the past with constipation but I have found the best is Sunsweet Californian prune juice, available in Tescos. As a matter of fact I’m drinking a glass now, it really does work. You need a decent glass of juice first thing in the morning, if that doesn’t work after a couple of hours try another glass but don’t overdo it.
I actually have a glass of orange juice with Laxido and a glass of prune juice, works wonders.
John

[PerkymiteParticipant]

I always use Tesco pitted prunes and Laxido I have 5 pitted prunes with my cerial and take the Laxido mid day well clear of any medicine I am taking.

kindest regards – vasbyte

David

[JaveajamesParticipant]

Hi everyone. Thank you so much for your replies. I went to see my consultant on Thursday and there was a stand in as my usual doctor was on holiday. She prescribed me Movicol which has similar ingredients to Laxido. Not tried them yet as i am on a pause week. I also did a round of the Health food shop and Iceland and got stocked up with Sunsweet California prune juice, Waitrose tinned prunes and Liquorice. Also taking probiotics for this week only as i am not sure if they will affect Revlimid when i start again on Thursday. Hoping that i can keep a smile on my face over the next three weeks.
James

[alpenatorParticipant]

I am currently on my 2nd cycle of Velcade + Dex after my first relapse of MM.
I seem to be on a cycle of constipation and diarrhoea, nothing normal with this disease is there.
I take Laxido regularly for other stomach problems and find that after 2 days of constipation I need to up the doses of Laxido from 2 a day to perhaps 3 or 4 – that usually clears it but then starts the diarrhoea.
And off we go again.

[andygParticipant]

Hi everyone.

Sorry I’m a bit late to this thread. Constipation is a pain in the a*** and a constant companion of myeloma treatment unfortunately. I try to preempt my bunged up days by starting my laxatives before I take the drug that cause the problems though I take Docusate daily anyway.

James I’m not sure you should be trying probiotics as I’m sure they’re on the things to avoid list a bit late telling you that now! Live foods are a no no I was told to have a diet similar to a pregnant woman. Infections including food poisoning to be avoided at all costs. Myeloma and it’s treatment hammers the immune  system and leaves us sometimes defenceless that’s why any temperature over 37.4 needs to be reported to the haematology ward ASAP 24/7

Every day is a gift.

Andy x

[JaveajamesParticipant]

Hi Andy,
Thanks for your comments and i will certainly look further into taking probiotics. I have only taken them during rest periods and not when i have been on treatment. I am now in my rest period following three weeks of Revlimid 25mg. I have managed my bowels much better than previously taking the prune juice, bran flakes and Movicol. The biggest problem is managing how much to take. Once started i reduced to one packet of Movicol each evening before bed and increased it to two if need be. I had been taking Special K for breakfast but found it was having the opposite effect and clogging my system up so moved over to bran flakes which are much better. As my pharmacist tells me “eqch to his own – whatever works for you”
James

[andygParticipant]

Hi James.

I’ve been thinking about when you need to be careful or more careful shall I say with what you eat. It’s when your neutrophils are low that’s is when the biggest danger occurs. I was neutrapenic for over 18 months so I was very careful about what I ate and I still are even though my neuts are reasonable. I try and keep risks to the minimum.

As to managing constipation a lot of it’s trial and error. Though I did find for me the anti sickness drug metroclopramide used to clear me out when I took it.

There’s lots that bung me up and one of the major causes in my case is pain killers which I now try and avoid if I can.

Every day is a gift.

Andy

[JaveajamesParticipant]

Hi andy,
Thanks for your thoughts on looking out for what you eat. I have been so good recently that i have become careless and my neutrofilus are quite borderline.
I am on Revlimid and the results have been significant. After two months my monoclonal and immunoglobulina Gg were lower than at any point since diagnosis some three and a half years ago. I am on month four which i think will be my last on 25mg as the consultant is hoping the monoclonal reading will be down to about zero.
Perhaps you could help me Andy on another issue regarding blood test results. Do you get a result for the number of antibodies, how is your MM position monitored? Here in Spain the consultant uses the two above, in conjunction with others.
Just had a few days away which were very pleasant, i did of course pack my Movicol which is still working well.
Best wishes
James

[andygParticipant]

Hi James.

I was diagnosed at the beginning of October 2011 and Revilimid got my readings the lowest they had been till then though not spectacularly low. We measure paraproteins here but I think it’s the same as your immunoglobulina Gg reading. Mine was 11.7 I don’t get a reading for much else I just ask my specialist nurse if my are ok and if she’s happy so am I. The other one I like to keep a check on is my neutrophils but other than that I let the medics keep them under a careful eye and rely on them to let me know when things go awry.

We’ve just returned from a weekend in Athens. Which was brilliant and I can tell you I packed more drugs than the average pharmacy stocks and yes mobicol was included.

Every day is a gift.

Andy.

[JaveajamesParticipant]

Hi Andy,
Thanks for your reply. Not sure about the immonoglobulina G,g being the same as the paraprotein reading in the UK. Mine is about 600 against a range of 650 to 1400. Before Revlimid i was about 5500. So not sure how this equates. The consultant tells me he looks at a range of readings.
James

[andygParticipant]

Hi James.

Your right I got it wrong apparently different patients show their myeloma in different readings. Some can only have their myeloma measured by bone marrow biopsy. I do know they don’t take any reading in isolation. Some have high paraprotein levels and aren’t treated immediately others have low paraprotein levels and get treated straight away due the results of other indicators in the blood.

Sorry for the confusion but I’ve learnt something new.

Every day is a gift.

Andy

• This reply was modified 10 years ago by  andyg.

[lizemParticipant]

Constipation: My husband is terrified of it having suffered greatly whilst in hospital for 10 weeks with meningitis. He started off with Movicol plus docusate twice a day. Now has Movicol once
daily, plus docusate sometimes and of course fruit and veg. This sort of works, but I think you’ve just got to find what works for you.

[greenersParticipant]

My husband is suffering badly with constipation he  is on CDT. And lots of morphine   He is taking fibre drinking 3 litres water and on movical  sometimes it is really painful not sure what else helps

[Author]

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