Terrible diarrhea with Pertuzumab (Perjeta)?

Hmmm. Have you tried probiotics? Perhaps another prescription anti diarrhea medicine? I'd eat a bland diet until this subsides, of you're not already. Drink plenty of fluids.  Keep us posted. Hang in there and (((((HUGS)))))!

Taxotere can also cause stomach problems. I had a dose of perjeta the beginning of nov, ad it took about 6 weeks before the diarhea got better.

I agree with taking a probiotic, also eat the brat diet and don't eat any dairy except for Greek yogurt.

Laurie

Sorry to hear about these bad experiences! I'm really worried about getting through chemo. I could be plenty unhappy with other side effects but the dehydration that comes with diarrhea is dangerous. .. and it sounds difficult to treat.

I was taking a ton of anti-diarrhea pills and they seemed to do nothing. My body slowly got back to normal just for a few days at the end of the cycle. ... I guess I should be happy that I even had those two days!

I had this nasty problem, too,   two trips to ER with dehydration, second trip, I had bloody diarrhea...with round #1.  Round #2 of Taxotere/Carboplatin/Herceptin/Perjeta is today.  I will ask for lomotil and a probiotic to see if that helps.  I would also like to know what dosage(s) they have me on...maybe they could adjust dosage(s).  Please let us know how you are doing today, Mary85.                             ~Sofi

I didn't get diarrhea from perjeta. AC however gives me farts that would knock a buzzard off a shiat wagon! Wooo, those are bad.

Hi April25 and others,

[Hi from a Person who has METS BC ( 2015). Neovalent TCH, for 5cycles, platelets, H for 11 mos., mast, rads ( 2012), propy. mast 2014.

Currently on TPH Chemo # 3 Day 15. Great response of nodes,intradermal bc on rads side, chest wall recurrence. With good scans will stop at 4T, continue on with PH as long as side effects minimized.].

First TPH loading dose was hell. Current dose hard on fingers, guts but manageable.

No, the TPH diarrhea is like nothing I have ever experienced or hope to. TCH was easier, as I felt better sooner, but it was still a challenge.

TPH may prove to be an effective treatmemt, but the severe diarrhea is unacceptable. Use musher's secret and working hands cream for wrinkled fingers..nails funky but ok.

Oncos and patients must be very proactive. Dose is important. Have your onco cut the dose if it is too hard on your system. Yes the TAX can be brutal if you are allergic. Premeds can also be problematic, especially dexamethodone. It is your body....

Too much imodium just bloats you up and can make things worse later in the chemo cycle.

The Diarrhea It is unpredictable, can be most disconcerting, and leaves you weak.

Here is what helped me:

A few days before chemo treatment:

Try some acupuncture ( use a diplomat) and do some yoga.

Cut out sugars, dairy, cheese,salt etc. anything hard on your system...Hydrate,hydrate,hydrate.

At infusion, hydrate,hydrate,hydrate. Get up and pee!

Put white gloves on your fingers, put them in small cups of ice to constrict blood vessels during Doxetaxel infusion. Be careful, not too cold...

( I shaved my head, after round 1, as it was sluffing... my hair has not fallen out. I look like a chia pet.) The wig helps.

Eat sparingly the first few days after chemo...avoid greasy,fried, food, meats, and drink water,fluids to flush out the chemos. Take refrigerated probiotic. Use them sparingly the first few days, everything is being killed off... the diarrhea comes several days later after, often days after the premeds wear off.

Awful heartburn and reflux from rebound of pepcid type products given as premeds. Can be really awful...I use an aloe drink and a homeopathic acid reducer...much milder on your system. No rebound effect, just feels better.

Eat a good bowl of Irish oatmeal ( milled finer than regular oats, or cook the oatmeal well) . Add mild fiber and extra protein to this meal. I use unsweetened coconut manna ( pureed coconut) and also coconut milk and craisins, and dry toasted pecan pieces from trader joes... These fats help keep food in your stomach longer. Avoid dairy...A GI supplement sometimes help. Mine had stevia in it..too sweet for me. I use maple syrup and cinnamon, and extracts ( vanilla, almond) for flavor as things taste blah,or too salty...

Avoid red meats, things hard to chew. Tuna is good. Plain chicken with rice soup is good. Add cooked sweet potatoes and some cooked mushrooms ( can be a diuretic) . Don't eat raw foods...Mango pops ( with the least amount of sugar. Avoid ice cream. I hate smoothies, but I am sure there are some good nutritious ones.

Use some slippery elm powder or capsules. Helps protect your intestines from burns, and helps with the esophegeal burning as well. Really works. Add vitamins back after chemo exit from body. Increase probiotic in proportion to the amount of diarrhea. This is a fine balance. Good luck!

I still get the occasional unexpected " dumping" if I overdue the food part with fried foods or too much meat, but it is more manageable. If I take more than 1 and 1/2 imodium I get very constipated and very bloated...very uncomfortable...Wear a belly band for supporting pelvic organs like pregnant moms do.

Watch for pelvic swelling and prolapse which can also be an issue. Be kind to your body. Try to walk every day...moves the toxins. Too much sitting really bad in so many ways. Walk the dog!!!

I start feeling better about day 15 of 21. Wish it was sooner. Due to the cold could not walk my usual mile. Cold affects fingers on this regime. Happy Spring!

Good luck all my TPH sisters..It really does take a village.

N

( Not really a new newbie anymore)

Hi

i have just seen your post ,i was on the same trio as you in febuary ,had two sessions and was taken off the chemo but still on perjeta and herceptin,i still have the diarrhea terrible and been on 8 loperamide a day now for six months ,my onco seems to think its ok ,but when i see him in two weeks i need to be taken off it as now beginning to feel ill with it .

Renee

I'm at Day 7 of first TCHP cycle...D not an issue until day 4 - now a major issue...will try probiotic (and maybe some Irish 🍀 oatmeal referenced in previous post)...hang in

I skipped a month of Perjeta and it did not seem to make a difference for me. Now as time has progressed I either have constipation from pain medication or diarrhea...no happy medium.

I'm sorry that you are having a rough time of it

I get my first round of TCHP tomorrow and am def worried about the diarrhea. Where to find probiotics and is there a particular brand? I was already going to do the oatmeal and BRAT, I've had horses for years and that is a staple for loose bm's in horses due to stress related events. You mentioned avoiding dairy, what did you use to cook the oatmeal? I also have dogs and a lot of owners use slippery elm, never thought about that for myself. Thanks Newbie, for the suggestions, will be making a list and getting those items tonight. I am hoping I won't need them, or at least all of this stuff but dear god I am thankful for those who have been down this road and offer their personal advice on what worked for them!

dsmathwig, My heartfelt sympathy on your double diagnosis. At least my type 2 was dx'd 3 years ago so I could get that under control before this new one hit me.

My Janumet is a combo med with metformin in it, and tho I seem to have a cast iron GI tract, I've found soft stools come with the med. One hint, listen to a dietitian or nutritionist when they give you parameters for carb intake. I thought I was smarter, and tried to reduce my carbs, which caused severe stomach upset. Once I kept my carbs closer to the target goal, they went away.

Also, I found it much easier to actually count carbs from commericial products, as that information is right on the box. Pringles, Cheezits, pretzels etc. Homemade is nice, but the carb numbers are at best, a guess.

Is your schedule for TCHP every 3 weeks? If so, this next week will be coming up for #2, right?

dsmathwig, the side effects are pretty miserable. Like you I'm using Immodium which seems to quiet the gurgly guts, and sometimes lengthen out the sessions of diarrhea, tho there is nothing like a stool so....*shrug*. Please don't misunderstand me, I don't expect to have a solid or even semi soft stool since one of the things chemo does is destroy fast growing cells everywhere, including your intestines, but some days I remember that better than others. I keep telling myself, this too shall pass. On my good days, I'm strong and have energy, on the bad days I'm up for a few hours, down for a few, rinse/lather/repeat. Yesterday was a good day, today not so much. As I told my daughter in love today, I am supremely grateful to be retired as I cannot imagine working during this.