In Praise of Perjeta
 

I started on Perjeta about 13 months ago, and I have not had any new lesions in that time. My personal definition of "stable" is "no new lesions." So I'm pleased.

It does cause diarrhea, which can be challenging and difficult to manage. But otherwise it has been quite tolerable.

Re: In Praise of Perjeta
 

yea, Amy! Great news

Re: In Praise of Perjeta
 

Great to hear Amy - I guess diarrhea is better than the alternative!

all the best
caya

Re: In Praise of Perjeta
 

I posted because I've seen a few members whose doctors express skepticism about Perjeta because it's so "new." It's not just me, the CLEOPATRA trial showed extremely positive results for it.

Re: In Praise of Perjeta
 

Amy, I've been receiving Perjeta and Heceptin alone for the past 14 months and have remained stable. 12 years at stage 4 for me! I am so grateful.
Kathy

Re: In Praise of Perjeta
 

Yay! I only had 4 rounds of Perjeta along with Herceptin and Taxol. I had a complete response - yipee! I agree about the diarrhea being challenging. I did find that the L-glutamine I took to prevent taxol neuropathy actually helped a bit with managing the diarrhea too. So glad to hear that Perjeta has had such great benefit for so many of us!

Linda

Re: In Praise of Perjeta
 

Linzer,
Did you take L-glutathione for neuropathy? I wish I'd known about it when I started chemo. I'm taking it now to UNDO damage. Fiver years later.
I have been on and off Perjeta since 2011. I think it's a great drug.
Amy,
Wonderful news you have for us. And soon, I believe, we will ALL have the best news yet: either a vaccine, immunotherapy, et al, to CURE us.

Karen
Who Still Believes In The Cure

Re: In Praise of Perjeta
 

KDR, First off, I love your avatar! I was a huge IDOJ fan when I was a kid :)

I did take L-glutamine while on taxol. I used a high dose and took it religiously each day. I had minor, transient neuropathy but it did not last. I'm 7 months out from last taxol and I have no signs of neuropathy. I'm so sorry that you have deal with it.

I used the Pure Encapsulations brand. My "research" showed that some brands don't include much glutamine and it's not regulated. You can buy the Pure brand on Amazon.

Good luck!

Linda

Re: In Praise of Perjeta
 

Wonderful news! I'm glad to hear that it working so well for so many.

Re: In Praise of Perjeta
 

Hi Amy,

I also heard about the very positive outcome from the Cleopatra trial - in particular, my chemo nurse (I'm currently on Herceptin / Perjeta maintenance every 3 weeks) told me that they had very, very positive results for the Herceptin + Perjeta combo for women that get this as first line... Will ask her again on Wedensday mybe she can give me more details.

For the "D" - I have heard that that can be the case, and so sorry that it is for you - must be tough. I have been on it for over a year now, and I guess I'm just lucky, but wanted to let others know that while it's quite often the case, it does not always have to be - I do not have diarrhea on Perjeta so far!

Re: In Praise of Perjeta
 

Great news!

Re: In Praise of Perjeta
 

Great drug. I've been on it two years. No bowel issues either, and I've read the magic sentence "no evidence of recurrent metastatic disease." I know it saved my life.

Glad it's helping you although I am sorry about the side effect. I hope it's managable.

Re: In Praise of Perjeta
 

Amy, such good news for you :) And thanks for sharing. I have bone and liver mets and I'm also on Herceptin and Perjerta as first line treatment. It's great to hear a positive story

Re: In Praise of Perjeta
 

Congratulations!! It's an amazing combination. I had 4 rounds of Perjeta with Herceptin and may be the only person on this board who had it in the adjuvant setting for stage 2 disease. Long story, but I was able to convince the docs at UCSF to approve it in my case due to a cancerous lymph node missed in surgery at a different hospital. The node would allow them to "study" the effects of the drugs and placed me in between neoadjuvant ands adjuvant. Pet scan at the end of chemo/P and H and no evidence of disease.

Re: In Praise of Perjeta
 

How much L-Glutathione did you ladies take?

Re: In Praise of Perjeta
 

Is anyone who is on the Herceptin/Perjeta combo having issues with nausea? I had my first treatment about a week and a half ago and had pretty severe nausea for several days. I am hoping that it was either as a result of the loading dose or that I may have just picked up a virus around the same time and this is not a side effect for me long term.

Re: In Praise of Perjeta
 

I’m glad to hear such positive results from Perjeta. I was supposed to start TDM-1 yesterday, as my breast cancer has spread to my lungs, after having surgery, chemo (Carboplatin and Docetaxal) and radiation, however, my oncologist wants me to take Perjeta first, because if it doesn’t work, I can still take the TDM-1 at a later day, however, if I take the TDM-1 first, and it doesn’t work, I cannot take the Perjeta later. So, I will now be taking Perjeta with my Herceptin every three weeks for an indefinite amount of time, along with Taxol for 8 to 16 treatments. The good news is, I will be given a very minimal amount of the Taxol, so I will have very little, if any, side-effects. The bad news is, my hair might thin out, just as it was getting long enough to not have to wear a wig anymore! Oh well, as long as it works, that’s all I care about. My oncologist advised that the Perjeta is a very effective drug that will attack all of the cancer cells in my body, and that she’s seen good results with this drug in the past, so let’s hope it works for me. She also advised that I shouldn’t experience any side-effects from this drug.
My oncologist also advised that she’s going to a conference in Copenhagen in a few weeks, and she’s going to discuss my case with other oncologists, and see if she can find a clinical study for me. One study she mentioned is the Hermione trial, however, she’s going to see if there are any new ones. I asked her about immunotherapy, which helped former president Jimmy Carter which his advanced Melanoma, but she advised that there is no immunotherapy for HER 2 Positive patients yet. In the meantime, I’m just hoping the Perjeta works, as my first round of chemo didn’t!

Re: In Praise of Perjeta
 

so glad it is working for you. i caution all stage iv her2 's who have progressed on previous tx. , get scanned , markers regularly. including pet ct or boone scan annually . perjeta and herceptin are genetic , not chemo. some of our stage iv sisters on perj/herc alone had it come back , in bones , brain . after 2 yrs . i dont mean to be a downer - just proactive. hopefully there are perjeta super responders out there . ( u know, the " C " word ) hope u are one . God Bless, Heal!

Re: In Praise of Perjeta
 

Good advice Phil!

I had pretty much stopped having PET scans because of all the radiation over the years, and just relied on tumor markers which had always been so accurate for me.

Big mistake! My recurrence last Dec. was not picked up by my tumor markers, and the estrogen receptor status had changed as well. Still learning as I go into my 20th year with this disease!

However, I did get over 2 years on just Herceptin and Perjeta.

Re: In Praise of Perjeta
 

Hi Kim,

As a newbie, it’s very hopeful to someone like me to know that there are people like you, who are still alive 20 years after diagnosis. I’m also glad to know that the Herceptin and Perjeta worked for you for two years. I hope it works for me for a long time, but if even if it only works for two years, like it did for you, I know that a lot can happen in two years. Right now my back-up drug is TDM-1, however, new, more advanced treatment, may come out in the next few years. For now, I’ll take all of the time I can get!

My oncologist told me that for now, I will be going for updated scans approximately every three months. That could change though depending on how successful the treatment is. Even if the treatment does work well for me, I will definitely push for frequent scans.