Perjeta added to Herceptin for one year

DATNY

Hello everyone!

Have any of you been prescribed Perjeta to continue with Herceptin for the 18 infusions following the chemo/surgery? FDA has approved such regimen recently, apparently adding Perjeta to Herceptin helps decreasing the odds of recurrece.

rainnyc

Yes! At the time it was off protocol, but now I believe it is more common.

Worked for me, at least so far (fingers crossed, obviously). And I found that once I was off chemo, continuing with Herceptin/Perjeta was much easier, with no significant side effects.

Good luck!

DATNY

Thank you, rain! I am surprised this isn't more common now.

MichyMom

My mom is on HP with Taxol for 8 more weeks but she will be on HP for as long as it works every 3 weeks. So yes, she is going to have H&P per her oncologist.

lily2

Yes.I have been on HP since last March and had a complete response!! two more infusions to go!!😀

DATNY

Thank you so much for your reply! I am also wondering if anyone with stage 2 has received Herceptin and Perjeta for one year.

jo6359

datny-Firsr TCHP every 3 weeks then Im scheduled for H&P every 3 weeks for 52 weeks.

DATNY

Thank you, jo!

MWGal

Both were recommended to me for the full year following my recurrence. I was initially dx stage 2b, but recurred 11 mos following my last herceptin

DATNY

Thank you, mwgal! So I gather that Perjeta is added to Herceptin for one year when the risk is somewhat more elevated? My curent stage is 2a, I am on Herceptin only for one year, and I was wondering if I should be asking for Perjeta too.

dya

I was initially on herceptin only, but my dr added perjeta to the mix because of the large nodes involvement and CEF chemo failure. I just had it yesterday. Crossing my fingers

DATNY

Best wishes! Did they recheck the hormone status to see if still Hr-/HER2+?

dya

DATNY - Yes, it indicated both the lymph nodes and the tumor tested positive for HER2, still negative on hormones receptors

DATNY

They are very effective treatments, best of luck to you and all of us! Following them, now we can take Nerylix too.

dya

Alas I don't think Nerlynx is available in Canada yet

DATNY

It should, but not all onc are using it. Mine is not keen in using it, he said too much diarrhea. I still have treatment until August so I don't need to worry about it yet.

carmstr835

Here too. First TC for 2 cycles. Then TCHP for 4 more cycles. Now. HP They stopped perjeta for 2 cycles during radiation and plan to stop it again in April for my reconstruction. I am expecting to only miss 1, this time.Then done in July.

dya

I'll check with my onc if that's a second-line option for me. I'm not prone to diarrhea at all so that side effect doesn't concern me

Tammaw

I was taking it with my chemo and was planning to take it with Herceptin for the rest of my life. However, once I finished the chemo and only took the Herceptin and Perjeta, I had an allergic reaction to the perjeta. Terrible itching!

I have tried everything. I started using lidocaine cream on it which helped so my dermatologist prescribed lidocaine patches. I use these and it helps. However, I decided to stop taking perjeta because the itching is driving me crazy.

Moderators

Dear Tammaw,

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VVV

Curious to see if others have stories about how their oncologists are handling it? I tried to talk to mine about it and even specifically mentioned the new guidelines from December but I don't think he's aware of them? He kind of blew me off and gave an answer that made it sound like he was talking about the old guidelines. It's really stressing me out. My last TCHP is next week, then surgery, and I want Perjeta added afterwards regardless but don't know what to do at this point. I'm going to try to gather more information then send him a message about it. This is just so annoying. I've seen so many other stories of women's oncologists asking THEM if they want to add it.

KCMC

Hi, I did 6 rounds of TCHP, I am stage 2A. I ended my six rounds of TCHP in November and started Herceptin only. I received at least three only Herceptin infusions. I showed up for my fourth infusion and my oncologist told that he wanted to add Perjeta back in. He explained to me the FDA just approved it for early HER2 positive breast cancer and the increase of survival rate was small. I decided to do it and I don't regret it. I don't have diarrhea or any hair loss. My hair is growing in nicely. I am a little fatigued but that will end in August.

DATNY

In my case, I brought up the issue to the oncologist and he agreed to add it. Based on the new guidelines this should be standard of care now.

VVV

Yeah, I know the percent is small but I'm 33 and perjeta barely adds any side effects over herceptin. I'll take it! I don't think he's unreasonable, I think it's more that he didn't listen which is why I plan to message him with a link to the new guidelines and make my case and everything it's just so irritating that I have to when I'm already falling behind on dealing with too many things. Part of me isn't sure if I'm missing something where the new guidelines don't cover me which is why I thought hearing from more might help. I'm pretty sure that I am understanding the new guidelines correctly.

KCMC

JVP - I think you would be eligible definitely bring it up to your oncologist. Any percent even a small one is good. I know it’s frustrating to have remember everything and to advocate for ourselves, hang in there and good luck! Like I said I don’t regret my decision to add it. I was told there would be ‘terrible’ diarrhea, but I don’t have thatside effect and maybe you will get lucky too !

VVV

Thanks for the encouragement! I needed it. Yeah, I'm sure I wouldn't regret it and I'm willing to take any small chance that it helps. As it is diarrhea is barely an issue (as in, controlled easily enough most of the time) for me so I'm sure it won't be any worse once they take away the TC part.

KCMC

once they take out the TC you will feel much better. For me it was night and day

tld2017

I just started my 12 weekly rounds of Taxol last week - had my 2nd one this past Tuesday. My oncologist had to battle BCBS to get Perjeta approved but it worked! My tumor was less than 2 cms and I am node negative, which is why BCBS initially denied the Perjeta. But my doctor made phone calls, faxed letters, etc. and finally someone listened. He felt that with my HER2+ diagnosis, adding Perjeta to my Taxol/Herceptin mix would work the best. I'll continue to get Herceptin and Perjeta for the full year, at three-week intervals after the Taxol portion is done.

sweetp6217

I began with TCHP in late July 2017 but dropped Perjeta after treatment #2. I could not control the D and it was horrible for me. Once the Perjeta was out of my system, The D went away, for the most part. My MO told me that it was my choice to stop it and it sounded like he was required to go along with it; he didn't push it. Plus Perjeta hasn't been around long enough IMO for long term outcomes.

I have to wonder though, what would have happened if I had stuck it out? I know that I would have had to take off work but would the SE have possibly subsided? Either way, he had recommended an entire year of HP, but I am only getting Herceptin for the rest of that year.

VVV

For me, it seems like the diarrhea has actually lessened with each round so far and I've got it pretty much entirely controlled with loperamide. I have no idea if anyone has had similar experiences. This past round I only ended up taking about 2 pills total to control it because I usually only take half. I did read somewhere yesterday (sorry I can't find the source but it should've been reputable) that herceptin side effects lessen after awhile which I'd never seen before but I thought was interesting and I'd like to know more about it. I'm not sure if perjeta is similar.

sweetp6217

My last TCH was a week before Thanksgiving. Digestive SE were pretty much gone by Christmas. Also, I used to ask them to stretch the Herceptin to a 60 minute drip. Now I'm down to 30 minutes (what they wanted all along) each time with no SE.