The Science and Side Effects of Herceptin and Perjeta, my HER2+breast cancer journey

[@correnebide5915]

Hi Sarah, this is the place and time to overshare with gusto! I’m in Australia and the pharmaceutical subsidisation for Perjeta is the same. I’ve just completed round 4 of TCHP - it’s brutal … My oncologist gave me the option of electing to add in the Perjeta - as I’m a pharmacist it was a no brainer. Possibly the wisest economic decision I will ever make. I am just blown away that with the incidence of BC and the effectiveness of this new generation of therapy for Her2+ BC that the lives of women are not worthy. Once I get some of my mojo back I will be definitely be making some political noise. Perhaps this can be the evolution of the Me2 into a Her2 movement.

[@KnittingsAndSewings]

You are so clear in explaining this. Oh my gosh, I admire you so much. So glad to hear that things are going so well in your journey. I think it's fascinating that Herceptin is like an antibiotic. My prayers for your continued healing.

[@jroodenburg5767]

Dear Sarah, thank you so much for explaining so clearly how Herceptin and Perjeta work.I am just coming to the end of my Chemotherapy journey and starting with the immunotherapy treatment. I have found your videos very helpful and love the way you

[@tripdudette]

Hey Sarah, am glad you’re doing well on ‘this’ side of 2b 💪. Thanks for the more scientific deep dive on monoclonal antibody therapies… For Stage 2a BC ER-pos PR-pos BC (at age 44 @ diagnosis in 2005) I received 4 x A/C 2 weeks apart, then Taxol + Herceptin together weekly for 6 weeks, plus an additional year of Herceptin on its own. Herceptin had just been approved for earlier stages of BC at that time (in the US, where I lived at the time, it was only given to Stage 3&4 Her-2 pos. patients up until then). Her3 wasn’t even discovered at that time. I have had heart muscle damage but have recovered from it since - just be sure to have regular cardiology follow ups. I wonder if the GI issues may be related to Perjeta alone (Herceptin on its own didn’t cause that for me, but who knows how different our GI tracts are?!). It’s a relief to see other treatments being available now after MILLIONS upon millions of Euros/$$$ being put in to lengthy & expensive research. Let’s see if 20 years from now there are faster more accurate treatments to stop all cancers in their tracks without all the nasty side effects 🤞. Keep on knitting!! 🧶

[@jamiethrogmorton2540]

Both cancer and the treatment for cancer are brutal. I’m so sorry you’ve had to go through this. ❤Your sharing throughout has been wonderful, clear, smart, honest, and helpful to many. I’m so relieved to see how well you’re healing, and grateful you’ve had med access and a supportive, capable partner. You are a delight!! 🧡💗 PS I can say that I had the same kind of wishing for clarity in the new normal after menopause too. It makes total sense after a confusing stage, and will be easier with the high degree of observation and self-awareness you have.

[@hillarylopes7557]

Having Crohns disease and under HER2 chemo treatment, I have had severe GI issues, so much so I was rushed to hospital suffering from Hypokalemia (dangerously low potassium) to the point of paralysis. I can't wait for this treatment to be over. Wishing you all the best on your healing.

[@Tc766539]

Sarah, Thank you for sharing your information about your treatment side effects. It has been very reassuring and has reduced some of the fear of the unknown. My very best regards!

[@jenniferbrighty5120]

Hi Sarah, I'm so pleased that you're coming to the end of your treatment with a great outcome. 🌞🌞🌞 Take care, stay safe and warm 🤗🌝🔥 Lots of love, Blessings, Healing Vibes and Huge hugs Jen xxxx ❤️❤️❤️❤️🙏🙏🙏🙏🫂🫂🫂🫂🐓🐓

[@jenc4506]

Thank you for such a great video. I completed my 6 rounds of TCHP this month and will continue with the Herceptin and Perjeta. Instead of getting them through my port I get them as a 10 minute injection in my thigh. The injection is called Phesgo. A lot quicker that way. I’m in the US, and I have a friend also in the US getting IV Herceptin and Perjeta. I wonder why the injection is not used more since it’s a much shorter way of giving it, perhaps an insurance thing? I have had some heart function issues and had my doses held twice. I will have more frequent echocardiograms and am being followed by a cardiologist and was also started on a heart med for the time being. But my heart function did return right back to normal upon holding the Herceptin for a month. Hopefully, I can finish my whole year of Herceptin. Thanks again, and I pray for your continued recovery.

[@glish214]

Hi Sarah! Your explanation was very well versed and easy to understand even without a medical background. Thank you for sharing. I have hormone neg, HER2+ stage 2A and I just got done with TCHP chemo and had my 1st round of perjeta and herceptin. I still have 11 more rounds to go. Thank you. Now I know why the doctor recommended both perjeta and herceptin together, because the original plan was just herceptin. Im praying for your fast healing.

[@lestalote]

Thank you, Sarah, for your “over-sharing” re the side effects. I am 74 y/o walking a similar journey with triple positive stage 4 BC and a history of Crohn’s, too! This is very helpful!

[@AkshayaSen]

I have completed 10 rounds of phesgo. This video was very clear and informative. Thanks a lot dear❤

[@nicoleautumn7742]

Best explanation I have ever heard.

[@rosygul4617]

Hi. Thanks for sharing your experience. I was diagnosed with stage 1 breast cancer which was hormone negative and HER2 positive. I had surgery followed by chemo. Then Herceptin. Before starting chemo my cardiac assessment was normal. By the 3rd dose of Herceptin inj I was very breathless. I did another echocardiography examination and found out that I have developed heart failure and valvular regurgitation. I had to stop Herceptin and now I am on medical treatment for heart failure. In my case it was not the cancer but the treatment for it especially Herceptin that gave me most problem.

[@KimTrinhMD]

Thank you for your useful information. My wife was recently diagnosed and your videos are helpful, informative.

[@DawnDemkowicz]

Thank you for a very thorough explanation of your journey. I too am going thru herceptin treatment after a total mastectomy Her2+ stage 1 grade 3 age 72. Chose this versus chemo plus herceptin.From US & didn't know about perjeta as oncologists & health insurance dont have this as the current approved protocol for our condition. Best to you.

[@jennyrose7220]

Hi Sarah, thanks for the great video. I live on Vancouver island and have just completed my second cycle of chemo and Herceptin/Perjeta (same treatment plan as you). I have lymph node involvement and could not fathom getting treatment without Perjeta. Thankfully my husband has excellent health coverage through work that covers the entire cost of Perjeta (minus $3500 that the drug company will reimburse us for). I am blown away with Canada’s decision to not fund Perjeta. It is a false belief that we have free health care in Canada. I believe we have 3 tier health here: tier 1: The rich will pay for the privatized American healthcare, tier 2: private insurance pays for better treatments (as in my case), tier 3: Canada’s “free” public health, that actually costs Canadians a lot of money (I read 1/3 of all tax dollars go to healthcare). I wish you much health in the future and thank you for sharing your story!

[@rebeccarose2346]

Thus was very helpul and detailed, thanks for sharing.

[@yellowbaby1926]

Omg thank you for this well explained journey with HP. I was diagnosed with triple positive however our drug path sounds similar. I agree the GI is the worse.

[@MoreThanAPatient]

Sarah, Absolutely loved your explanations and this video. Thank you for putting it together. I completed my 6th TCHP on 12.4.2024; Just had my 9th HP treatment. I've also been sharing my daily symptoms. I agree that sharing your real experience can only help others going through this. Education can only be a good thing. Again, thank you. When did your hair start growing post TCHP?

[@Yarn_Lab]

Hello thanks! I hope your TCHP went as well as it could have, I'm sure you're glad to have it behind you. As for my hair, I'd say about 5-10% never fell out. And maybe half of it started growing back right away. We shaved it all down 3 weeks after my last TCHP to get it all the same length. And then probably another 3 weeks later buzzed it down to a 2 again to even things out. Some parts started growing in faster than others. And it's overall much thicker than it was before. So there's a perk.

[@cangurotto]

Thanks for being so comprehensive, Sarah! I really appreciate it and yes, viewers are looking precisely for all those little details you so generously shared, so it's definitely NOT too much information. It's reassuring as a breast cancer patient to feel heard and seen. You have a natural flair for relaying information in a very clear manner (plus a fantastic Canadian accent which I love!) and it has been very helpful listening to your experience which, so far, has been similar to mine. I'm just about to do my 5th round of full chemo (Docetaxel, Herceptin and Perjeta) and it has been more my upper GI tract that has given me the worst symptoms. Pretty ok, for the most part, in my lower GI tract. Did you experience any watery eyes during your full chemo treatment. Mine just won't stop! Looking forward to putting the full chemo behind me and just getting the surgery done. I have seen your video on your 1 year anniversary and I can't help but wonder: the fact that you're done with your HP regimen now is awesome but how are these continual questions in the comments to your videos affecting you and your mental health? I can't imagine what that would be like. Is that helpful for you to relive or does it maybe make you anxious? Just curious as to the psychological implications of this on you, post NED. Continued blessings to you on your health journey

[@lestalote]

Hi there! I too have annoying eye side effects…watering and very dry and have trouble seeing also! Blessings to you and thanks for sharing!

[@cangurotto]

@@lestalote yes! Thanks for sharing your experience, lestalote. 😉 It's a little annoying, both the watery eyes and the occasional dry eyes too, with the blurry vision sometimes, as well. Apparently, it's the Docetaxel chemo drug that causes the watery eyes. I usually get an injection of Pegfilgrastim (to boost my white blood cell count) 24 hours after I've done chemo and I've found that about 2 days after that injection, the watery eyes stop for a few days for some reason, but then they come right back. I've got one more round of chemo to go, so I'm hoping that once I've finished with the Docetaxel, the watery eyes might stop. Here's hoping! Blessings to you on your health journey. I hope it's going as well as possible. ❤️

[@CindyCaraballo-dn7qz]

Listening to you is like … seeing all my side effects. Everything including GI symptoms. I have 4 more infusions of Herceptin and Perjeta. I have also gain weight and are with a lot of water retention. I’m also very ready to be done with all this treatment, have my reconstruction and concentrate on recovery and strength my body and mind.

[@ASH-T786]

Hi Sarah Thank you for your volg i have her2 positive stage 3 diagnosed in June had 6 round of chemo and surgery in December waiting for my radiotherapy, i am now only getting trastuzumab should i be worried my fatigue has gone worse since summer

[@Yarn_Lab]

Hello, thanks for the comment, I hope your treatment has gone as well as it can so far. I can't give out medical advice, only share my own experience. But if you've had a noticeable change in your fatigue it may be worth discussing with your care team.

[@SumairaSiddiquiMasood]

Thank you so much for making this video 💗

[@SuniHegde]

Hi Sarah, I am diagnosed with IDC. Just finished with my TCHP chemo. Going to start HP soon. Do You have any side effect while going to HP? How long it will take to my hair grow back?

[@lianeisme]

I have been diagnosed with stage 4 breast cancer there is o in my breast it’s in my liver, stomach and virginal wall it’s ER & PR negative her2 positive. I have been on paclitaxel 12 weeks every 3 weeks perjeta and herceptin. Yesterday I was told NED but have been told I have to be on Perjeta and Herceptin every 3 weeks for the rest of my life. My question is why is mine life and you get to stop. I’m asking because you said you have studied science a bit so maybe you could explain this to me.

[@Yarn_Lab]

That's too bad to hear about your diagnosis, my guess is that the staging has to do with it, my cancer was only stage 2. I think there is a big shift in treatment approaches for stage 4 metastatic cancers. Glad to hear your are NED tho! All the best.

[@chabotamasupelo8320]

@@Yarn_Lab you are right it’s the staging . You and I are practically having the same treatment.

[@indigolovely6610]

Are your taste buds back to normal after finishing the chemo drugs?

[@Yellowrose3737]

I had the same thing exactly.I went through the same thing Thank you so much.

[@techelectronic6730jaihind]

What is difference trastuzumab vs herciptin.

[@chabotamasupelo8320]

Hi Sarah did you have to go through Radiotherapy after Surgery? Your response will be appreciated

[@Yarn_Lab]

No luckily I didn't have to do any radiation, I had clear margins and no positive lymph nodes.

[@chabotamasupelo8320]

@@Yarn_LabThank you just delighted my lymph nodes were negative! NOT a candidate of Radiation too ❤️. You my lead Sarah and blessed to have here

[@truptidhumal9855]

Hi Sarah Did you go into menopause after your 6 TCHp rounds?

[@Yarn_Lab]

Yes by about the 3rd round the hot flashes started, and they got pretty intense, made it hard to sleep through the night. I didn't get a period before chemo anyways (I have an IUD) so I'm not sure how that would have been affected. It took about 4 months for the menopause systems to improve after I finished TCHP, not 100 percent sure whether I'm back to normal or post menopausal now as I still don't have a period.

[@terryburch3815]

I have the same regimen and it’s covered here in Maryland, USA.

[@LeeMerriner]

Hi did you have muscle aches with herceptin

[@rihamsalah84]

What a coincidence me too was diagnosed last march with triple + stage 2b

[@SavedbyGraceSETT]

How long after your 6 rounds did you get surgery?

[@Yarn_Lab]

I think the goal was to get to it about 4 weeks after my last round of chemo, but it ended up being two months almost exactly, just based on OR wait times in Alberta. Because I opted to do an immediate reconstruction it was a longer surgery and so a longer wait for the OR spot. If I had opted for the tram flap reconstruction (I went with an implant) I was advised the wait time would have been even long just logistics of getting the bigger team together with the number of OR hours needed

[@truptidhumal9855]

@Yarn_Lab : How long after your last TCHP round did you get your Herceptin Perjeta infusion?How many rounds before your surgery?When did you resume those infusions after surgery?

[@Yarn_Lab]

@@truptidhumal9855 I stayed on the every 3 weeks throughout. So 3 weeks after my last tchp I went for just hp. I think they got 2 or 3 in before surgery. Did one hp a week before surgery and the next one two weeks after.

[@ConGamePro]

Information was super useful. Wishing you the best.

[@truptidhumal9855]

Did you experience any hair thinning with Herceptin Perjeta?

[@Yarn_Lab]

All of my hair fell out on the full chemo, TCHP, I've been on just the H and P since finishing that in Aug and all my hair has been growing back in fine (actually it's come back in thicker than before)

[@lindacraig5056]

I was diagnosed with invasive Ductal carcinoma Metastatic Breast cancer April 2020 I am positive for 3 I get H&apart ever 3 weeks and also Ibrance and injections of Faslodex and XGeva once a month.i have had very few side effects. I get echo cardiograms ever 3 months and PET Scan every 4 months

[@truptidhumal9855]

Do you know how many cycles of Herceptin and Perjeta are you going to have?

[@Yarn_Lab]

In total 18, six with the rest of my chemo last summer and now just finishing up 12 without. It's a full year of treatment every 3 weeks

[@Yarnloveturtle]

NED!!! That’s amazing. So glad your your great news. It’s been a journey for sure, thanks for sharing💕🧶

[@Karen-qx7jw]

Thanks very helpful and very understanding ❤💙💚💛💪💪💪💪💪👍👍🫶🫶🫶