Herceptin and Perjeta side effects after chemotherapy.
I have been on Herceptin Hylecta and IV Perjeta mono therapy. I have 6 treatments left. I had more gastrointestinal issues while on chemotherapy (TCHP) than I did on HP mono therapy (no GI issues whatsoever for first 4 rounds of mono HP). However, since my last two HP treatments, my diarrhea has picked up. I also have upper abdominal pain-sometimes on the left and sometimes on the right. Nausea seems to be a factor on and off. I had upper endoscopy when I was diagnosed in March--no ulcers or H pylori. Bloodwork three weeks ago was normal. My oncologist says it's unusual for me to have normal gastrointestinal function after TCHP and then suddenly develop problems in the middle of HP. I have started back on Protonix (PPI) and Pepcid. Anybody out there experience the same? Thanks
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I didn't have nausea, but did have continuing diarrhea with Perjeta. I dropped the Perjeta after TCHP & chose to do only the Herceptin for the rest of the 17 treatments.
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dlr68....I was her2- fish at biopsy and her2+ fish after surgery. I did AC-T before surgery and then started Herceptin and Perjeta after which I’ll do for a year. I had my port removed so I’m doing phesgo which is the subcutaneous injection of hp. I’ve had 3 so far with no issues. My MO told me the biggest side effect she sees with Herceptin and Perjeta is gi issues (diarrhea). She said if I had that issue we would drop the Perjeta which should resolve the issue. She also told me that it could pop up at any time. So far so good for me but if diarrhea starts I will ask to drop the Perjeta.
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Thanks so much, MinusTwo. I don't know if you guys can see the description of diagnosis underneath my post (I filled it in when I registered, but don't see it on this post), but diagnosed Stage 2A triple positive with 33 isolated cancer cells in one of six lymph nodes after right mastectomy in March. I had surgery first. My first Oncologist did not want to put me on Perjeta. I had some pharmacogenomic testing before I was diagnosed and it just so happened to list Herceptin as being a drug that I would have a decreased response to because of an FGFR4 genetic variant. I changed Oncologists and he put me on the Perjeta after three rounds of TCH, so then I got my last 3 rounds of TCH with P. I would hate to go off of the Perjeta, but Oncologist said he would not hesitate to drop the Perjeta if I started having problems with it.
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Thanks so much, hnsquared. I just think it is so crazy how cancer can flip hormone status and her2 status! I am actually on Phesgo, as well. I've had two injections now. I never got a port when I was diagnosed because the original plan was to do 6 rounds of TCH and then Herceptin Hylecta injection. Perjeta was added on later at my request. Glad to hear your oncologist said that diarrhea could happen at anytime during treatment. Mine said that it could happen anytime during TCHP, but said that it would be unusual to start up down the road on just HP. It makes sense to me that if the medication can cause diarrhea, it could cause it at any time. I don't know what I will do..I think that if it really becomes a struggle, I will just do the Herceptin Hylecta after my next Phesgo.
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dir - you need to go back to "my profile" and make your information "public" so it will appear below your posts.
Is this neoadjuvant chemo? If so, maybe the break while you have surgery will help.
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You will do better to join us over in the Triple Positive group under the HER2+ thread. HP, even though it is antibodies, is really targeted therapy rather than what is usually called immunotherapy. There are loads of us who went thgouh TCHP over in the HER2 section though!
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OK, thanks! I will.
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Hi everyone,
thanks for this post. It helps to know what others are experiencing . I recieved TCHP neoadjuvant for 6 doses and had a lt. mastectomy 2 weeks ago. I will soon be restarting HP to complete 52 weeks of treatment. Path. report indicating PCR ( pathologic complete response ) to prior treatment so only immunotherapy needed now. hearing about SE helps to prepare even though I recieved HP prior to UMX. curious if anyone is experiencing hair loss again with HP only? I see that it's a SE of Perjeta. Just starting with hair return! Guess there are worse things than losing hair again. Also, is anyone experiencing peripheral neuropathy with Perjeta?
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Hi DeniseML.
I have not had hair loss on my head, but I did lose my eyebrows and eyelashes 1-2 months after I completed chemotherapy and continued on HP. I was getting some peripheral neuropathy toward end of chemotherapy, and it has continued on through HP. I’m also having some issues with intermittent generalized itching (no rash) on arms, torso, and upper legs. Not sure if this is a type of sensory neuropathy, reaction to anxiety, or part of the “flushing” response to hot flashes from Tamoxifen??
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Dlr68: Thanks for response. I spoke with MO since my last post. It seems I have some unusual symptoms occurring. Scheduled to restart Herceptin and Perjeta on Feb. 24th. Rads -CT simulation on 2/16 & rads about 2 weeks from now. The peripheral Neuropathy is progressing even though no chemo for 2 months now. Also nails are lifting from base, again unusual to just be occurring 2 months after last chemo & immunotherapy! Not looking forward to restarting Perjeta, though MO states she does not usually see progression in neuropathy with it. I will try it just because staging was IIIC with inflammatory component & still I obtained complete response to chemo. NO cancer found in LN or UMX! That being said, Perjeta only provides a 2% benefit when added to Herceptin. Both MO and I agree not to hesitate to drop Perjeta if neuropathy worsens still. Wishing everyone the best as you progress through treatment. Hoping for the best!
Thanks for sharing the other SE you are experiencing . I'll be sure to look out for itching. Are you able to have your MO prescribe med to help such as Xanax or Ativan ? NO need to suffer anymore than is necessary.
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I have completed three months of 3 weekly chemo and am starting Immunotherapy with Herceptin and smaller doses of chemo (I don’t know what) in 3 days for 3 months of weekly treatments and I am so anxious about the side effects, please tell me what I can expect
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Hi Pia_lux, We welcome you warmly to our community- glad you found us. If you haven't already, you may want to read our information on Herceptin. There you can read about potential side effects. You may also want to read about Perjeta. Also, let us know what your chemo is that they are giving you in addition, as this will greatly dictate the potential side effects. We're here for you!
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hi, first time writing in. Not sure exactly how this works.😗
How long does herceptin stay with us to continue working?
My year is up in April. I’m concerned of course
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This is also my first time posting to the forum. So glad I found all of you!
I just finished up 4 months of chemo (TCHP, then TCH, then Taxol and Herceptin weekly for the past 6 weeks as I did not tolerate the original protocol at all well.) I will have surgery in 2 weeks. I was wondering if anyone else has had Stage 1 ILC as well as DCIS? My oncologist is not giving me a break from Herceptin and I have not been able to eat normally for 4 months.
I, too, would like to know what it is like to be on Herceptin alone. She wanted me to also take Perjeta, but since I had such a bad experience with it, she dropped it but won't rule it out for the next year. I am terrified of feeling sick (nausea, diarrhea, lethargy) for another year. I know everyone reacts differently to these medications, but I just need more input.
Thanks!
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I finished the TC part of my TCHP in November and have had three infusions of HP by themselves since then. The first couple of rounds I felt mostly okay except the usual GI issues, which are controlled with immodium for me. After the last round two weeks ago I have been pretty nauseous and woozy/lightheaded fairly frequently, but I’m not sure if that’s from the HP, or a sign that the chemo knocked me into early menopause since I have also had quite a few warm (not quite hot) flashes.
Other than that my neuropathy has mostly gone away, my finger and toe nails seem to be returning to normal, and my hair is growing back.
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Thank you, Melbo. This is very helpful. I will just hope for the best!
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Thanks for your information! I am taking Ativan 1.5mg at night. It helps, for the most part. Unfortunately, the only way to know what is causing what, is to drop a drug and see. I have two HP treatments left and will continue on Tamoxifen. I'm still having a pretty hard time with the itching. I'm hoping that the itching will go away when I stop HP by the end of next month. If I continue to itch for the next two weeks until my next HP treatment, I may just stop the Perjeta and get Herceptin. The interesting thing that I just found out was that there is an ingredient in Phesgo (the subQ Herceptin Hylecta and Perjeta that I receive) is L Histadine. L Histadine is an amino acid that is the precursor to Histamine. Histamine is what gets released in our body in response to allergies. That is why Claritin and Zyrtec, etc, are called anti-histamines and used for allergies. I'm not sure if there is enough L Histidine in Phesgo that is getting turned into too much histamine in my body..and that is what is contributing to my itching or not. I'm still researching. If so, I would be interested to see if L Histadine is also in the IV form of Hercepting and Perjeta. If not, I may go back to the IV forms for my last two treatments.
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Drl for me itching in the last four months of Herceptin was one of the hardest parts of treatment. Nothing except for ice worked and I tried everything. Fortunately, it was pretty much over three weeks after the last dose of Herceptin.
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I’m 11 months into H&P with treatment ongoing. I am itchy around the back my neck mostly and at times it drives me insane. There is nothing visible on the skin but I feel like I want to scratch it raw.
Where is your itchiness and what is it like? How do you treat it?
any advice would be much appreciated.0 -
helenlouise - I have had 3 HP treatments but am very itchy on my back, I am going to ask my MO about neuropathy itching. I'm not sure if there's a specific medical term for it other than neuropathy itching. I use lots of lotion to help and use a back scratcher.
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Hi NS.I’m scratching as I read your post. I too will ask MO next time I see him. It’s driving a bit bonkers.
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Wow! thanks for the info and suggestions! I had first of twelve HP adjuvant treatments. little irritated and upset that Neuropathy progressed last 2 months, after chemo completed. MO continues to say it can't be related to Chemo or HP. She recommends Neurology consult. Have come to the opinion that unless the symptoms are textbook MO will not believe they are related to chemo/ immunotherapy ! The fact that the on-going eye tearing and new onset nail separation ( and falling off that is occurring and was told could happen with TCHP treatment ) is still related to the neoadjuvant treatment.
The neuropathy is no longer worsening, but, also not any better either. Hoping It will still resolve along with the other symptoms associated with the TCHP. Will have another conversation with MO about stopping or continuing Perjeta. As much as I hate to see even 1 more MD, I will obtain a Neurology consult.
Sorry for the venting! Try to stay optimistic usually.
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Hi DeniseML - my neuropathy seems to be worse some days. I completed TCHP mid-October and have had 3 HP treatments so far. I’ve recently increased gabapentin to 1200mg (take 300 in AM, 300 at 2pm and 600 at 8pm) plus B12 complex. I ice my feet 2-3 times a day which provides temporary relief. If it doesn’t improve, I may switch to Cymbalta or other treatment. Seeing a neurologist maybe an option as well.
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Denise - I can NOT believe your MO. Where did he train?
First both Taxotere and Carboplatin are known for neuropathy side effects. My MO even asked if I wanted to cut back the dose before treatment 6. I did have a neurologiy consult and was told that there can be some improvement up to two years. She made sure I understood "getting better" didn't mean back to where I started, but better than where I was then. I saw her again after two years. It did get "some" better, but there really is no treatment for that dead feeling - only drugs to help if you're having pain.
Second - eye tearing is actually "dry eye" and definitely related to chemo. I went to an ophthalmologist and got some great drops that really helped.
Third - nail separation is also related to taxotere in specific. I didn't loose my nails, but my big toe nails separated. I finally had to consult a podiatrist because I got a fungus underneath the nails. That was 2014 and I'm still having issues.
The only problem I had with Perjeta was diarrhea. I did 6 rounds and the rest of the year with Herceptin only. I did fine on Herceptin alone.
The good news for both Denise & Nsbrown - you are not very far out from neoadjuvant TCHP yet. There's every chance your neuropathy will improve some over a couple of years.
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Minus Two- thanks for responding. I was told about Neuropathy side effects for both chemo agents and was also asked if I wanted to decrease dose for treatment #6. It was my choice not to lower dose since neuropathy was grade 1 still and wanted to throw everything at this cancer. The MO doesn't believe that the progression of the neuropathy 2 months out of receiving last chemo is due to treatment. It is this that I question since still experiencing other chemo related side effects 3 months later.
I am scheduled for 11 more HP treatments and am considering stopping Perjeta since neuropathy also a listed side effect. So far I'm not seeing where anyone is associating their neuropathy to Perjeta. Having worked in health care field for 40 years I know that Inflammatory breast cancer (IBC), stage IIIC is not usually included in many studies, or is poorly represented when stats provided regarding cancer free survival. That said, the SO did say this is the 1 st time in 30+ years of practice that she has seen a complete response to neoadjuvant therapy for IBC. Honestly hate to make a decision that would adversely affect outcome long-term.
NSBrown54- thanks for taking time to share your experiences. I did notice that my feet felt much better hours after icing during HP infusion. I gave it a try last night after your post mentioning it. Definitely does help! I was able to go right to sleep without the usual burning, pain , pins & needles worsening. It will be part of my nightly routine until symptoms improve . after re-reading your post, it looks like the neuropathy has worsened since you started the HP treatments. is that right? Have you considered dropping the Perjeta at all?
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Hi DeniseML - my neuropathy has definitely worsened. My MO is suggesting Cymbalta if the increased dose of gabapentin doesn’t help alleviate my pain. I do get relief at night taking 600mg of gabapentin and sleep pretty good too. So far, most of my pain is during the day, especially in the afternoon. I’m trying to give it two weeks before I change to a different drug. I’ll discuss stopping/ reducing Perjeta with my MO if I’m not able to get relief.
I hope you’re able to resolve or relieve your neuropathy symptoms soon.
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Hi MinusTwo - what eye drops are you using? I've been using refresh lubricant eye drops that I get from Costco. I'm putting drops in 8+ times a day, but my eyes are still dry and my vision blurry. My eye doctor gave me samples for Xiidra, but they're burning my eyes, not covered by my insurance and too expensive.
Thanks.
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NsBrown: Doc gave me samples & I think "Systane Ultra". I bought some "Refresh" at Costco and don't find them very effective, although my son loves them. Lately I've been using "Thera Tears Extra Dry Eye Therapy" and like those. Good luck.
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My eye doc recommended Blink lubricating drops, they come in a regular formula and a gel one. I still use them now. I had a lot of involuntary tearing from Taxotere, and it took a couple of months post-chemo to dissipate. Something to also consider if you’re on aromatase inhibitors is that thelack of estrogen can contribute to dry eye as well.
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MinusTwo - I’ve been using systane lubricant eye drops at night and the refresh during the day. While my eyes are still dry, they have improved somewhat. I’ll check out the Thera Tears.
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