I’m on cycle 2 of 6 Docetaxel Perjeta Herceptin combo and have had diarrhoea (5 or 6 episodes a day) every day since I began treatment with painful bowel cramps. I take loperamide to control it but haven’t finessed the right dose yet. Consequently I am housebound and distressed. Im following the Brat diet and avoiding all dairy caffeine alcohol. My onc says the diarrhoea is principally caused by the perjeta but can only suggest loperamide. Any advice? Thank you
Perjeta diarrhoea : I’m on cycle 2 of... - SHARE Metastatic ...
Perjeta diarrhoea
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IAMALIVE33
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Good morning, just wanted to sympathise, that sounds awful for you. I hate bowel probs. I am on the same regime as you, had my last round of Docetaxel yesterday (yay!), will carry on with the Phesgo every three weeks "until it stops working".
I have had the opposite problem to you; apart from about three days of diarrhoea each cycle, usually around days 6-8, I am very constipated and take daily Movicol, Senna and Docusate sodium. I had always thought the diarrhoea was caused by the chemo but I might be wrong. In my case the constipation is caused by the morphine I have to take to control my pain.
So I am sorry I have no suggestions for you apart from maybe changing your diet? More white bread?
Keep smiling, but I know how depressing it is, you can get so sore too from repeated diarrhoea. Treat yourself to a lovely perfume maybe and lots of lovely baths and cuddly hot water bottles. Look after yourself xxxxx
Hello there. I am the founder of a nonprofit focusing on simple natural strategies to reduce the harms. Here is our Handout on Constipation. annieappleseedproject.org/w...
Thank you, really appreciate it.
Thank you. Yes I had terrible constipation during my primary cancer now the reverse. I helps just to know others are out there.
Hello my friend, I have been focusing on natural strategies since my own breast cancer diagnosis in Jan 1993. I note that Clove Tea has been shown effective in helping with diarrhea (studies with some chemos). Also Activated Charcoal, a dietary supplement that in the US is found in many drug stores/pharmacies. I wish you well. I hope this helps.
Thank you!
Thank you I will give both a try.
Hi, I met you at a large bc conference 14-16 years ago and really appreciate the work you do! Your website is the one I go to when I need this kind of info!
It gives me great joy to hear that. I appreciate your support. We have an active Facebook page you can visit as well if you wish.
Hello there. I hope today is better for you, and you are doing all the right things. I wanted to jump in and add that Gatorade and jello helped me. The Imodium does work, but the trick as you mentioned is the correct dose as well as taking 2 tablets at the first onset episode and then 1 every x hrs afterwards. Check out Dana-Farber Cancer institute health library on dealing with diarrhea.
dana-farber.org/health-libr...
The issue then is is may work too well and then you’re constipated and then have to deal with that. Ugh. But you will find your balance and get your GI back on track. Sending hugs.
I get very stressed by gut related problems there is a real connection for me between anxiety and bowel issues. Thanks for the link good to know I'm doing the right things.
I just want to mention that both Gatorade and Jello have sugar in. Perhaps ginger tea would be helpful. I suggested clove tea for diarrhea and activated charcoal. For constipation, check our Handout. Posted above.
My hospital pharmacist steered me away from ginger while I was on chemo because of its medicinal properties. Now that I'm on immunotherapy, I can use the ginger tea.
Sending hugs. That sounds so awful. Hoping you will find a balance somehow.
It's the unknown unknowns that catch you out. Thank you I'm sort of getting there.
It is the unknowns!
I too have had the same problem as you, I completed the paxitaxol in May and continue on the perjeta & herceptin. For the ongoing diarrhea I take Imodium almost every day . I was taking it only on days that I was going to be away from home but my dr has said I can safely take it daily . I also have hydro morphone for pain as a PRN , I find when I use it plus the Imodium my bowels are more normal . Other than the diarrhea I feel well on the perjeta & herceptin much better than I did on I brance . We are all so different and react so differently
I sometimes get about 3-4 days relief from the diarrhea just before my next infusion .
I hope you find something that settles this for you . It can be a regular pain !
Luann
IAMALIVE33• in reply to
Sorry to hear you have the same problem but good to know your doctor has said you can take Imodium every day I was worried it might cease working. Can I ask have you ever returned to having a normal bowel movement? So far I've swung from constipation to diarrhea and back since I began in early Dec. Thank you for replying it means a lot.
After chemo ended, I had that problem with Imodium, now I only take it if I have 3 or more bouts of diarrhea in a few hours. I usually don't need the Imodium, and I'm less likely to become constipated.
AnnieAppleseed• in reply to
Hello my friend, I have been focusing on natural strategies since my own breast cancer diagnosis in Jan 1993. I note that Clove Tea has been shown effective in helping with diarrhea (studies with some chemos). Also Activated Charcoal, a dietary supplement that in the US is found in many drug stores/pharmacies. I wish you well. I hope this helps.
1 normal in the morning , and by 11am I start to cramp . So if I was leaving my house that is when I would take the Imodium , thankfully it has controlled it . It was just this past Thursday that the dr said just take it everyday . But I do think the morphone helps because of it tendency’s to cause constipation . Luann
AnnieAppleseed• in reply to
Hello my friend, I have been focusing on natural strategies since my own breast cancer diagnosis in Jan 1993. I note that Clove Tea has been shown effective in helping with diarrhea (studies with some chemos). Also Activated Charcoal, a dietary supplement that in the US is found in many drug stores/pharmacies. I wish you well. I hope this helps.
I have diarrhea every day. I am on Piqray. I take two Imodium after my first incident, and one more after each incident. I take two 650 mg Tylenol to reduce inflammation and 5 mg Oxicodone for the pain. I have tried many ointments for my hemorrhoids and found hemorrhoidal cooling gel works best for me. I have several Pure Enrichment XXL 20”x24” heating pads I purchased from Amazon. They have an automatic 2 hour shut off. I tried other brands but recommend this one. Caldrea makes room spray air fresheners in essential oils in various scents. I purchase this from Amazon.
Piqray has given me diabetic problems. I go back to normal when I take a break. For this I take Glipizide 20 minutes before I eat. I have a Freestyle Libre glucose monitor from Abbots to check my sugar.
Treating MBC is a full time job.
Good luck finding your path.
Reenie
Wow that is so useful. I need to dampen down the inflammation in my digestive tract so the diarrhoea isn’t so painful. Diazepam works but is addictive so not ideal. I will try tylenol. I have only been diagnosed for 2 months, after being told I was effectively ‘cured’ so still trying to get my mind around the enormity of all this and the life changes it demands. Definitely need the room fragrance too luckily my kids are finding that bit amusing and blaming the dog. You are very kind to share your discoveries.
I have diazepam to use. Don’t worry about addictive. So is oxycodone. But who needs the pain. You can rotate between them. The hemorrhoid gel is soothing. And a small undies pad. The heating pad is important to relax the rectal muscles. I usually sit on it most of the day. Feel better soon. Reenie
Just ordered the heat pad which is better than having a hot water bottle down my pants.😀
Great. The Tylenol needs to be 650 mg not the 500. I restarted Piqray after a three week rest. My numbers went up 50 points, but after being back on Piqray for only 6 days, my numbers went down 25 points. Yea. We live in Rochester NY. Lots and lots of snow. And it is still snowing. Resting on my heating pad. Reenie
We don't have Tylenol in the UK but I think paracetamol at the same strength would be similar. No snow here but due soon in deepest Wales UK.
I had diarrhea as long as i was on Taxol (12 weeks), it's tapered off since now I'm just receiving Herceptin and Perjeta, but I'm still more prone to D. than I used to be, and have to be more careful what I eat. Right now, my trigger seems to be uncooked (salad) greens. Because I love dairy products, I've stayed on Lactose-free milk. I do have trouble with constipation, and take stool softeners as long as I'm not having D. symptoms. Whenever I'm not sure of a food, I have a small portion and wait a couple of days to try it again.
Yes I love dairy and have moved to oat milk and almond milk both which are a bit yucky but I'm sure I will get used to them. Oh the halcyon days of only getting diarrhea from dodgy sea food. I really hope it gets better after the taxol finishes as the Herceptin and Perjeta are for the long haul. Thank you for your advice. It feels rather lonely being a MBC sufferer and hearing from kind people really lifts me. Francesca
There are several cancer oriented cook books out there, and I have all of them! the National Institutes of Health (NIH) Cancer Institute publishes " Eating Hints: Before, during, and after Cancer Treatment" cancer.gov/publications/pat... #18-7157
I will check this out. As someone else said MBC is like a part time job. There is so much to learn. And I'm a bloody scientist.
My wife had similar treatment with 6 doses of Perjeta, Herceptin & Taxol at 3 weeks intervals 6.5 years ago. She did have Diarrhea during the time. However it stopped after Taxol . She continued with Perjeta and Herceptin for the next 5 years with normal motions throughout.
So there should be a good possibility that Diarrhea will settle down after Taxol is completed.
BTW , she has been without disease and is in remission for the last 4 years plus. My understanding is that there many patients with similar good outcomes.
You can be very positive. Take care.
Hi Joedev Sorry I missed your post. The is welcome's information as my diarrhea is terribly life affecting and since I have to take Perjeta Herceptin long term it would be wonderful if it was the taxol and improved after ceasing it. I have teenage kids and my husband died recently so staying alive long enough to see them into adulthood is the only thing that keeps me going. Thank you.
I am on immunotherapy and I am having constant diarrhea, cramping and abdominal pain also. When I first started on the immunotherapy back in July it took me about 2 months to get my bowel back to normal, with just the occasional diarrhea. Imodium is my new best friend and I also take Bentyl (dicyclomine HCI 20 mg tablets), which is an anti-spasmodic for the bowel -it is a prescription. I take one tablet of Bentyl about 45 minutes before I eat a meal, so 3x a day. The combination between Imodium and Bentyl helped tremendously. That lasted until the end of December, now my diarrhea is out of control again, even though I haven’t stopped the Imodium or Bentyl. I have been on the BRAT diet these past two weeks (along with Imodium and Bentyl), and it hasn’t done anything to control the diarrhea. I will try this for another two weeks. I have had IBS for about 30 years, so I know it’ll take a while from my bowel to respond. If I don’t get any better, I will then try IBgard, which is over the counter, if that doesn’t work, than a will ask my doctor about Lomotil, which is a prescription. It can be addictive , so I won’t be able to stay on it for long, but I know it will help settle things down for a while. Having IBS is how I have become familiar with these drugs. I also know that I can be put on steroids to stop the diarrhea, but that would be a last resort, since I’m not a fan of steroids. I don’t use much toilet paper anymore, I use baby wipes. Baby wipes are much more gentler on my bottom and have helped with the soreness that can develop from wiping so much. Be kind and gentle to yourself, and Best of luck to you!
Hello Sister I'm sorry you are going through this but so glad to have heard from you. I will check out all these things. The cramping pain is the worst isn't it. I tried to take probiotics at the tail end of each 3 weeks to improve the bio of my guts but I think that made it worse. I've given up dairy as that was recommended on others sites. As a veggie that removes a significant part of my diet. Its funny I didn't mind taking stool softeners when I had constipation but was reluctant to take Imodium every day as it felt like another medicine but am resigned to it now. Just come back from chemo and am going to begin the whole nasty process again. I agree about toilet paper it feels like sand paper and I have started using wet wipes. I have a lovely GP who will prescribe anything so will talk to her too. Interesting you say that steroids can be used for the diarrhea as mine doesn't start til I stop the 2 days of steroids immediately after chemo. Thank God we have lots of toilets in our house and I have a wonderful partner who is supportive. Thank you for all the information Francesca
I use wipes, too, and when I feel chapped, I put Vaseline on the affected area.
Yes, the cramping pain is awful! To help my gut, I don’t take probiotics, but eat greek yogurt on a daily basis. Way back when, I found it helped with my IBS tremendously. I introduced yogurt to my system very, very slowly. I started out with every other day on yogurt, just a spoonful, then I would have one spoonful of yogurt a day for a couple weeks and then graduate two spoonfuls a day for a couple weeks and so on, until I was able to handle one container a day of yogurt. I have known people who have started on a probiotic for the first time and have had issues with it because it wasn’t introduced slowly to their system, and they weren’t even dealing with diarrhea or cramping. If your system isn’t used to a probiotic, maybe try building up slowly with a lower dose? On a lighter note: at my bridal shower, (many moons ago), my BFF bought me a bunch of stuff to take on my honeymoon. That included a sexy négligée, a package of toilet paper and a bottle of Pepto-Bismol!😂 Lol!
HelloI am new to this group and am learning how to navigate so seeing this post just now. Sorry for such a late response and a long post. Has your diarrhea resolved? I have had same issue on Herceptin and Prejeta - for the past almost 2 years- not as frequently as you - I had about episodes 2 or 3 days a week. It is such a difficult thing to deal with .
First week of January it was really bad with issues on about 5 or 6 days of the 21 days between treatments.
I was seeing my Onc the following week - I told him this is what I was going to do as I had to try something to help with this - he with fine with it all.
1. I did an IBS diet called FODMOP (downloaded the app from Monash University)
and although my issues are not caused by IBS - the issue of diarrhea is common to both. I actually started FODMOP about 2 months before seeing Onc as you need to give it time to see if it will help.
2. I took Psyllium fiber for a week (Not Metamucil which has additives). This was suggested by Onc. I stopped after a week as I did not want to get constipated and thought things may get confusing if I am doing more than one thing at a time re - what in fact is working??
3. I kept a diary (on the FODMOP app) of what I ate, when I had bowel issues , stomach pain etc. By keeping a diary I determined my worse days were day 1,2, 10 .
4. I took prophylactic Imodium even when no diarrhea- 1/2 tab- so 1 mg on days 1, 2, 10 . I also determined what seemed to be triggering foods and avoided those.
5. I took 1 mg Imodium if I had that "feeling" in bowels that I would often get prior to a loose BM. I never exceeded 6 mg of Imodium in a week ( a week not a day)
6. After 3 weeks of no diarrhea I was hopeful. This Friday will be 8 week with no issues and after 2 years of dealing with diarrhea and bowel urgency-all I can say is - I wish I knew how to do a backflip
I no longer take prophylactic Imodium and have not taken any in past 3 weeks. I still follow FODMOP diet and may start to reintroduce some foods - but hesitant to rock the boat.
I am just thrilled that this has worked (so far). I came up with this on my own - I really like my Onc and the department but they really had no concrete suggestions.
I watched a GI specialist speak at a conference that I found online- It was an IBS conference but he spoke about all cause diarrhea , soluble vs insoluble fiber etc.. It was important for me to know the difference as soluble fiber gives stool bulk and insoluble fiber helps speed up transit of food in stomach and will help prevent constipation (not something I needed ). I feel like I can leave the house now, that I can take a trip, go to a cottage. I still walk into any new place and determine where the washrooms are and I suspect I will always do that.
Hope this is not TMI - I just can relate so much to you having bowel issues. It impacts every day life so much
All the best.
💟
Wow thank you for that amazing reply. What a coincidence I have just started the low fodmap diet about 2 weeks ago. It’s so hard to tease apart all the variables and work out what works and what affects what isn’t it? When I take enough Imodium to stop the diarrhoea it turns into constipation and the slow transit time leads to a fermentation feeling in my gut. I feel fatigued and almost drunk ( I don’t drink alcohol). My onc stopped the docetaxel for 1 cycle to help me work out if it was that or perjeta that was causing the diarrhoea and that reduced it to just 3 days of major bowel problems on day 2,3,9. But I still felt terribly anxious about going away from home during the whole 3 weeks as it was so unpredictable. I’ve always had digestive issues as a consequence of anorexia when I was younger. I’m back on docetaxel now for 2 more cycles of hell then it’s just herceptin and perjeta. I think low fodnap has helped as once the diarrhoea is over I have less digestive stress thru the rest of the cycle. I miss wheat though. I didn’t know you could get loperamide in 1mg form I’ve only had 2mg but I’m going to try it so I can get on top of the swinging from diarrhoea to constipation. I don’t know how old you are but can I ask if the herceptin and perjeta have had any other side effects? I’ve lost muscle tone despite continuing to exercise and my libido has taken a nose dive (partly no doubt due to the diagnosis) but I think the anti hormones have also played their part. I’m so grateful for your fulsome reply thank you so much. I live in an isolated rural location and whilst it is beautiful It’s also lonely and so it’s great to ‘meet’ someone who’s had a very similar experience to me. I hope your treatment continues to go well. Have you thought of making your advice into a you tube or IG film? I bet there are thousands of women out there suffering the same as us.
BW Francesca
I bet there are lots of woman with same issue
You cannot get Imodium 1 mg
I buy the capsule form which is easy to split and I use a pill cutter
I have it with me just in case.
The Monash university FODMOP app makes following program easy
I was already not eating bread, pasta or processed food
That was for weight loss though ( still want to look and feel good )
I had lost 20 lbs on what I call the Chemo diet, which promptly went back on post Chemo
I also find if I eat potato chips or candy, as I did at Christmas, I get gut issues
Every time
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