HERCEPTIN and/or PERJETA Threads
Comments
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Hi Linda
Were you diagnosed Stage 4 de novo?
Liz
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Tracy--logged on to see what your status with Aetna is and I'm so happy to see it was approved.
I just passed two years since my de novo diagnosis. I'm so grateful to still be on my first line treatment, including H&P.
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I'm just getting caught up on this thread after having been away for a bit.
MaineRottweilers- I'm so glad everything worked out in the end, but how frustrating! No one should have to go through that. If it happens again or to someone else, maybe we can organize a letter writing campaign? I figure there is strength in numbers, and once they know how many of us are willing to make a fuss maybe they will back down. Hopefully this isn't a trend with insurance companies.
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Count me in for the letter writing campaign if need be!
Wondering if H&P caused any of you to have acne long-term? I'm 7 weeks out from my last TCHP infusion,so I'm not sure if the ongoing acne (face only) is related to my H&P infusions, my body detoxing from chemo, or something else. Thinking I should wait it out a bit longer before seeing a dermatologist.
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It took my skin a long time to clear up after finishing chemo both times. I started washing with Aveeno baby wash and this kept me from breaking out. I use a concealer containing salicylic acid applied with a qtip to any zits that try to show up, they are gone by the next day. Not sure if it was the chemo causing the issue or H&P but have clear skin now.
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I am starting THP next week. Had TCH last time. Glad this thread is here so I can read about others' experiences. Was hoping that, being C-free, this regimen would be easier ... but it doesn't really sound like it. I did not have acne on TCH but my skin got really dry - and usually it is kind of oily.
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Hi Lumpie
I managed 4 THP. Now on HP only. You can do this. Everyone is different. I kept a diary of side effects and that helped to track what was happening.
You will be in safe hands on this thread too.
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Hi all,
I am getting my 4th Taxatore, Herceptin, Perjeta treatment this Thursday. I have bone, liver, and 2 lymph nodes mets. After my 1st treatment my 27.29 markers went from 403 to 179. After my 2nd down to 64. After my third down 2points to 62. And my alkaline phospshate is high. So does this mean the treatments have stopped working already? I do get nuelesta shots and I read that can mess with the liver panel. I am on sick leave from my teaching job as this taxatore is kicking my butt. My eyes feel dry and funky, my legs feel weak, mouth sores and complete exhaustion. Someone give me some hope? I am 61 and was first diagnosed at 42. Cancer free until 2013. Thank you!!!!
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Lisa, the first treatment is a loading dose, which my explain the initial large number drop. My hospital doesn't do tumor markers though and I don't have liver met, so I don't really know what those numbers mean. I had severe reactions to taxotere, then taxol and ended up doing very well on Abraxane with H & P. I found Perjeta made my skin dry, used lots of lotion and I highly recommend walking to reduce fatigue.
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Hi Lisa
I managed 4 cycles of THP before neuropathy in fingers/ toes began and my onco said no more. He felt that 10 doses over my primary and secondary treatment was enough.... well for now anyway.
All your side effects are common and I can relate to the eye issues for example because they bothered me and added to the general misery. The fatigue too was increasing and I found that I had very little, if any recovery days at the end of the last cycle before I was hit again.
So back to your point about hope. This is where you need to dig deep. You will feel exhausted and possibly like giving up: I did and was actually grateful when the Taxotere was dropped. From your post it does appear to be working though, so focus on that and ask your onco directly why he feels you should continue. Most oncologists will be balancing the benefits of chemo with quality of life in the secondary setting. Therefore I suspect he feels that it is worth carrying on.
I hope you get sone answers. You are doing well and have got through 4. You should try and get strength from this achievement.
Finally, can you call your dr before Thursday and ask these questions.
Good luck!
PM any time.
Liz
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No more Perjeta, after maintaining NEAD for the last 2 years the Oncologist is dropping the Perjeta, I will continue to receive Herceptin and continue to take the Letrozole. Not sure how I feel about this. I'm a believer of "why mess with a good thing" and am just a little worried.
Edited to add, i wonder if her decision has anything to do with this??
http://www.milberg.com/Lead-Plaintiff-Deadline-for-Roche-Holding-AG-RHHBY/
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luv2fish- Hoping you stay NEAD! That's interesting re Perjeta lawsuit. Keep us posted on how you're doing. So your MO didn'tgive you any justification? Concern about SEs?
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Other than the fact I'm doing so well, she stated that Perjeta is only proven to be effective for so long and at this point I'm past the effectiveness.
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My friend told me that baking soda and salt water rinses helped with her mouth sores....I'll have to keep it handy for when I get it. Maybe it will help you? Haven't started my chemo yet, or the HP therapy.....port goes in 10/4. Good luck!
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Has anyone opted to NOT take Perjeta with Herceptin, after chemo? it seems the latest reports show only a 1% difference in life expectancy....Herception alone seems almost as good 93% vs 94%....might not be worth it, since I'm 70, and Herceptin seems to give almost the same results...and I wouldn't get the side effects from P. Thoughts?
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Could be. When I see the oncologist on Tues after my brain MRI, I'm going to ask her if I can opt out of taking Perjeta & just go with the chemo & herceptin. I'm almost 71, and the marginal difference in length of life is only months....94% (combo) vs 93% (just herceptin). Besides, it's just that many more side effects I won't have to suffer through. I'd rather have a few good quality years with my family than take a med that's not really worth it at my age....maybe if I were 40 or so, I'd not think that way, but now I do. Quality vs quantity!! There are three articles online today that I read, all saying the differences are marginal...
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I am really confused about perjeta. So when I finish the taxatore and I am only on perjeta and herceptin-I have just a few months to live? Herceptin alone did not work for me. I dont understand the Cleopatra study either. Help!
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I need to reread some of the clinical trial papers because it's been a while, but I believe in cases of metastatic breast cancer H+P resulted in an additional 6 months of survival (remember, this is the average across a few hundred patients in the trial, so 6 months is actually quite big...I think it was 18 months vs. 12 months) over Herceptin alone. Now, the recent APHINITY trial results released over the summer I believe showed very little difference between H+P for a year versus just H. But this trial focused on NON-metastatic breast cancer. And it was looking at s year of both vs. 6 cycles of HP followed by H. Someone please correct me if im wrong though. Ill try to Ginsburg and link somebody papers.
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I need to reread some of the clinical trial papers because it's been a while, but I believe in cases of metastatic breast cancer H+P resulted in an additional 6 months of survival (remember, this is the average across a few hundred patients in the trial, so 6 months is actually quite big...I think it was 18 months vs. 12 months) over Herceptin alone. Now, the recent APHINITY trial results released over the summer I believe showed very little difference between H+P for a year versus just H. But this trial focused on NON-metastatic breast cancer. And it was looking at a year of both vs. 6 cycles of HP followed by H. Someone please correct me if im wrong though. I'll try to find and link some relevantpapers.
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http://www.nejm.org/doi/full/10.1056/NEJMoa1113216
METHODSWe randomly assigned 808 patients with HER2-positive metastatic breast cancer to receive placebo plus trastuzumab plus docetaxel (control group) or pertuzumab plus trastuzumab plus docetaxel (pertuzumab group) as first-line treatment until the time of disease progression or the development of toxic effects that could not be effectively managed. The primary end point was independently assessed progression-free survival. Secondary end points included overall survival, progression-free survival as assessed by the investigator, the objective response rate, and safety.
RESULTS
The median progression-free survival was 12.4 months in the control group, as compared with 18.5 months in the pertuzumab group (hazard ratio for progression or death, 0.62; 95% confidence interval, 0.51 to 0.75; P<0.001). The interim analysis of overall survival showed a strong trend in favor of pertuzumab plus trastuzumab plus docetaxel. The safety profile was generally similar in the two groups, with no increase in left ventricular systolic dysfunction; the rates of febrile neutropenia and diarrhea of grade 3 or above were higher in the pertuzumab group than in the control group.
CONCLUSIONS
The combination of pertuzumab plus trastuzumab plus docetaxel, as compared with placebo plus trastuzumab plus docetaxel, when used as first-line treatment for HER2-positive metastatic breast cancer, significantly prolonged progression-free survival, with no increase in cardiac toxic effects. (Funded by F. Hoffmann–La Roche/Genentech; ClinicalTrials.gov number, NCT00567190.)
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Based on above study, H+P long term resulted in an additional 6 months of PROGRESSION FREE survival over H (not justsurvival as I stated in my previous post). Big difference!
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Lisajo6- Some women live for years on H alone. P is a newer drug so less data. The studies look at overall survival and progression free survival (meaning stable disease without progression, not death). In the study I posted above, progression free survival was 12.4 months for the H only arm and 18.5 months for the H+P arm. Keep in mind that these are averages of 800 trial participants, so some women probably only had a month or so without progression while others had 2+ years. It varies from case to case how your cancer will respond, but an additional 6 months of progression free survival by adding P is huge. It's a 50% increase
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MommyErin-I was on herceptin for five years when it stopped working for me. Perjeta was added to the herceptin and I have been NED for over 3 years now. I am very thankful I was put on this drug. I have been stage IV for over 8 years.
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Reneeswan- That's awesome! So glad it's working for you! Both my MO and breast surgeon are huge proponents of both herceptin and perjeta, so I'm happily getting my infusions every three weeks. I was diagnosed in March, so still early in my BC journey, but I'm hoping and praying for 8+ years
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Thank you so much for the information. I get so confused when researching these studies. Right now I am on the taxatore and I am struggling, but if I can get more time with H + P only-I will take it. Thanks again
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lisajo6- The taxotere is tough! It's great for killing cancer, but hard on the body. Once I finished it, HP infusions have been a breeze! How far along are you? Hang in there!
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I just had my fourth infusion. Two more to go. My ca27.29 is now 47. So it must be working.
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Lisa,
I am now on HP having dropped Taxotere in June. I have some tiredness on infusion day but after that I am fine.
I only managed 4 Taxotere.
Still waiting for clarification over my last scan. Hoping I'm stable!
Liz
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jackboo09,
Hope your scan is stable! I really want to stop the taxatore-but my onc is not in agreement with me. I am miserable.
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Lissajo6, I am sorry you are struggling with the taxotere. Keep in mind you are in the drivers seat and can request to drop the Taxotere anytime. I want to let you know that in my almost 3 years of treatment, I have not had other mets pop up from the neck down. I was only ever able to take two infusions of Taxol and one of Taxotere. I had super bad SE and had to drop them very early. I still got to NED without it. The only chemo I was successful at was AC which I got for four cycles back in 2015. The Herceptin kept me stable from neck down til I was diagnosed with brain met. I still am clear today with the addition of Perjeta so am on H&P only.
The short version is that if you need to give it up due to side effect issues, it is your body and you have to decide how much you can take. Unless you would not be given the H&P, there is not much of a difference to completing two more cycles. Discuss with your onc. They are trying to help us but can miss that quality of life is important at the same time. Good luck.
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