H0-ho-hope someone has some PERJETA feedback...
 

Merry merry her2ers...

Hope someone has some feedback.

I added Perjeta last Thursday. Have been feeling on and off nauseated. Much more pooperia (and no tykerb!).

The uber sensitive tummy began before Perjeta but the nausea is new and feeling so crappy that I had to stay home last night is NOT OKAY with me! It's all about the QOL!!

Am back on the BRAT diet, am still dairy/gluten free. About 4 weeks ago, I added digestive enzymes with every meal since I digest food much better this way (wobenzyme). Without the enzymes, food was bloating and going right thru me. Yuck and yikes. I am taking a pro-biotic, and an acid blocker BUT I am having trouble keeping food in and not feeling queezy.

I can only find side effect info on Perjeta that is based on Perjeta +CHEMO.

Just wonder if anyone on targets only, have had any gastro stuff? (to remind you - I'm on HAPZ - herceptin, avastin, pejeta & zometa).

Thanks for any food for thought and wish you all a 2013 filled with blessing; strength, joy, love and HOPE!

Re: H0-ho-hope someone has some PERJETA feedback...
 

Dear Gal -
Don't know of anyone getting Perjeta with only targeted drugs. Could it be the Avastin not agreeing with P?

Hope those symptoms are mainly due to the stomach virus that is going around (Hillery comes to mind). Looks like you are taking all the normal measures to help with the digestive issues.

How long have you been off tykerb? Could you be having some "withdrawal" symptoms? I drink organic ginger tea any time I feel a little out of sorts gastrically.

Hope to hear of you reigning in those syptoms before long.

Re: H0-ho-hope someone has some PERJETA feedback...
 

SoCalGal,
I'm on Perjeta, and sometimes get cramps/pains after an infusion. Never vomit or other, though. There is a horrible stomach virus going around and I think I got that last week. Hope you feel better. (I do think at least one person is on Herceptin/Perjeta here). Maybe they'll see your note. I remembered her because that IS my ultimate goal.

Happy 2013
Karen

Re: H0-ho-hope someone has some PERJETA feedback...
 

I vote for ginger in any form. Ginger is a good anti nausea remedy for various stomach related problems. Try some ginger tea, a little good quality ginger ale, fresh ginger cooked with your food or some dried ginger from a health food store. I think you can even get ginger candy.
Your doc might also be able to offer you some compazine or zofran anti nausea meds too.
I hope you feel better soon.

Re: H0-ho-hope someone has some PERJETA feedback...
 

Hey there,

I have been on the Perjeta/Herceptin combo since August 1, 2012. So far so good. I had GI issues for about 2-3 infusion times. I had the tummy grumbles and diarrhea. I was careful about what I ate for about 9 weeks in that I stayed away from foods which had alot of roughage. That just seemed to add to my symptoms. So, bran cereal, beans, broccoli, wheat bread, foods of that sort were cut out temporarily. Also, no spicy or mexican food. For me, it did work itself out so I am back to eating how I want essentially. Drink lots of water and I mean aim for two quarts of water if you can manage. It helps to flush out your system. If you vomiting, taking Zofran or Phenegren would be helpful. I am certainly not running any marathons after the infusion but it has not kept me in bed yet. I do force myself to walk the next day. I also work fulltime. Stay away from the caffeine. This is hard and I have been bad recently with my morning coffee. The caffeine dehydrates you and with these meds hydration is key.

Good luck to you, SoCalGal. My husband and I were planning on moving to San Diego. We were married on the beach in LaJolla in 2011 and three months later I diagnosed with this. So, we stay put in the Midwest. Feel free to PM me if you wish.

Take good care,

Jackie

Re: H0-ho-hope someone has some PERJETA feedback...
 

in a study comparing taxol/Herceptin w/Taxol/herceptin/Perjeta, the latter group had more diarrhea so the addition of perjeta did cause more GI effects. i had diarrhea i week after my loading dose of perjeta which is twice the subsequent infusions. i have not had any problems since on herceptin/perjeta. Maybe you'll be ok next time.I have a sensitive stomach too, but have not had any nausea. hope it improves!

Re: H0-ho-hope someone has some PERJETA feedback...
 

I had a horrible (and short) run on taxotere/herceptin/Perjeta. I had digestive issues of every style, but do not know whether it was a side effect of P or T Ortho premeds or the bag o meds they wanted me to take to combat s/e including those very meds! Hope you will get control over it soon, it's just so poopy dealing with all that c%#p!

Re: H0-ho-hope someone has some PERJETA feedback...
 

I had my first infusion of just Perjeta/Herceptin on 12/17. My first infusion with Perjeta was on 9/25, but it was with Taxotere & Herceptin, replacing Carboplatin. I noticed then that it was way better than the Carboplatin.

After the 12/17 infusion I've felt like a million bucks overall, but that's due to not having Taxotere. My onc wants me to have Benadryl with the infusion, so I am, and after the Benadryl wore off I was just fine.

But come to think of it, I had diarrhea after Christmas dinner, so 8 days after. It was pretty intense, but I attributed it to something I ate, not the Perjeta. I'll have to see if I have it next round as well...maybe it was actually because of the Perjeta.

But I haven't had any other symptoms as far as I can tell...

Re: H0-ho-hope someone has some PERJETA feedback...
 

I finished 6 tx of Per/Her with Taxotere than3 tx of just the Per/Her. I have many days of the Big D-I take some sort of anti-diarrheal every day but other than that it is the easiet combo I have ever done. Unfortunately it isn't working so I am going back on Taxotere this Tuesday. Sorry that you aren't tolerating it better-I had dreams of staying on it forever because it was so easy

Re: H0-ho-hope someone has some PERJETA feedback...
 

How's the Perjeta going, Flori?

Re: H0-ho-hope someone has some PERJETA feedback...
 

Hi Lovely Laurel,
Gotta say, still very much struggling with the side effects and this Thursday is my infusion. The 3 weeks just flew! Today's not such a great day -- woke up with a headache category 10, leg cramps last night, and already loaded up on Imodium which makes me feel quite lousy. Other than that, Mrs Lincoln, I'm FINE! Speaking of Lincoln, I did see the movie, and the take home message for me, which I also posted on my refrigerator, was LIGHTEN UP, MRS. LINCOLN. She was a very gloomy woman - never knew that about her, so I am reminding myself to lighten up as well! Thanks for asking about me and the perjeta :-)

Re: H0-ho-hope someone has some PERJETA feedback...
 

Man, Flori, that stuff is rough! I remember Taxol knocked me hard, but after a week I began to feel human again. This Perjeta seems to kick you down and keep you there! I wonder if Perjeta, like Tykerb, gets more tolerable with time? I sure do hope so, Flori.

I will keep you in my prayers on Thursday.

Re: H0-ho-hope someone has some PERJETA feedback...
 

Ok, it's now 9 days after my next Perjeta/Herceptin and the big D is back, so I would have to say yes, Perjeta/Herceptin is causing it.

Re: H0-ho-hope someone has some PERJETA feedback...
 

So glad to be on Perjeta, but the GI issues I'm having are really distressing!
I had my first infusion on Thursday, 1/17 & 36 hours later had the most horrendous episode of the Big D! I felt like I was prep'ing for a colonoscopy. The next day was pretty precarious, with multiple bathroom trips, but since then nothing nearly as disasterous. Thank GOD it happened in the middle of the night in the safety of my own home and my own bathroom.
I've been afraid that each time I eat that I'll have a major episode, but thankfully that hasn't happened.
However, I have since been struggling with major GI discomfort - not nausea, not gas pain, though I do have a majorly bubbly belly after eating, but like my intestines are on fire. I wouldn't be surprised if things are inflamed from all the GI distress, but I'm not sure how to address it, ie- what pain meds will help? I've taken a half an oxycontin at night so that I can sleep, but there's no way I can do that during the day.
I'm hoping and praying that this is just part of the Perjeta "learning curve" and that my body will accomodate AND RESPOND. Even if these episodes only last for a couple of days after each infusion, at least I can plan appropriately. It's the "unexpected" that is so troubling!
Thanks for sharing your experiences...we are laying new ground with our real time response to this drug for those that will follow in our path, including our doctors & care givers who are learning as we go too.

Keep the Faith~

Jessica

Re: H0-ho-hope someone has some PERJETA feedback...
 

I started Perjeta and gemzar last week. Gemzar is my 7th chemo. None of them have made me nauseated - until now. I don't know if it's the gezar or perjeta but it's something. Ugh. I just hope that means it's working!

The "inflamed" intestines things scares me. That's what I felt like before I got c-diff. The diahrrea was a later symptom, not an earlier one.

Re: H0-ho-hope someone has some PERJETA feedback...
 

Besides immodium does anyone have any suggestions with having the severe case of the big D with perjeta? Mom had infusion 5 days ago and she is passing straight water.

Re: H0-ho-hope someone has some PERJETA feedback...
 

Oh weird to see an old thread like this! Looks like I've been on perjeta for a year now. It was definitely the Gemzar causing my nausea. I've never had any bowel issues. The only thing Perjeta has done for me is made me completely stable! No new cancer, no growth and I've been off chemo and only on perjeta for six months.

I LOVE PERJETA!!!!!!

I think if your mother is having pure liquid diarrhea it is imperative she go in for a stool test. (She can do it at home but she should see her doctor) She may have something more insidious, like c-diff, which can be deadly. That doesn't sound like a normal side effect of perjeta to me, having liquid diarrhea. I wouldn't wait, if she has an infectious disease like c-diff, the longer she goes without treatment, the more dangerous it could be. I went septic from it.

Has she been on antibiotics or been in the hospital recently? That would give a clue that the possibility that c-diff is a real one. If she does take immodium, it could make it much worse as the toxins won't clear her GI tract. Not to scare you but I was sicker from c-diff than I ever have been from cancer and as you can see, I have had a lot of treatment. C Diff was the worst thing I"ve ever experienced and that's saying something.

Good luck to your mom. I hope you get it figured out soon. Definitely call a doctor.

Re: H0-ho-hope someone has some PERJETA feedback...
 

No she has not been in a hospital and she has not been on any antibiotics.

She went to Doctor yesterday and they prescribed an anti-dia med. I wonder if she has stomach flu or something. This is her 3rd or 4th treatment of perjeta + Herceptin and usually has a loose stool but nothing like what she had this round. Thanks for your reply.

Hoping whatever is going on gets better for her and my Dad (her caregiver)

Re: H0-ho-hope someone has some PERJETA feedback...
 

KG1993, It's been a few days. How is your mom doing?