Any one Herceptin Perjeta long term?

[EZSZ]

I've been on both since December 2020. Initially, I had no side effects, now I do. Does it get better once the body is accustomed to these medications?

Has anyone here passed the 5 years?

[EvaL]

EZSZ, I have been on the Herceptin and Perjeta since May of 2016. I don’t know what kid of side effects you having.

[Fpmeehan in reply to EvaL]

I’ve been on Herceptin without Perjeta for seven years now and experience fatigue usually three days afterwards.

[EZSZ in reply to Fpmeehan]

Hi, thanks for the response. Wow! Seven years, good for you. I am very curious why some patients receive Herceptin only, as oppose to Herceptin /Perjeta. Is it geography, is it the location of the Mets?

[EZSZ in reply to EvaL]

Hello Eval, thanks for responding. I've been on H&P since mid December 2020. Side effects: fatigue 3-4 days, then insomnia, itchy skin, conjested ears/runny nose. Some of the side effects are new, so I am wondering if things improve or change in any way as time goes by. I am very pleased to know that you have passed the 5 years milestone, I read that it reduces the chance for recurrence. How are you feeling? How long have you been NED (no evidence of disease)?

[CarolineBorucki]

I have been on Herceptin and Perjeta since 2015 with little to no side effects. I wish you well with your treatments. Take care, Caroline

[EZSZ in reply to CarolineBorucki]

Hi Caroline, thanks for responding. First, great news, six years and going... may I ask some questions? How long did it take you to be NED? Where were the Mets? How often do you do CT? Do you lead a normal life between treatments? My side effects are possible minor too, but a constant reminder of what I am trying to forget between treatments.

Best, D

[CarolineBorucki in reply to EZSZ]

My cancer metastasized to my liver. After 6 months of being on H and P and Abaxane, I was told the lesions in my liver were dormant. At this time, the Abaxane was stopped and I continued on H and P. I did have side effects with abaxane so maybe that’s why I don’t really recognize side effects with just H and P. I have treatment every 3 weeks. I occasionally have digestive issues and my nails never look healthy but I just consider this my new normal (and an excuse to get regular manicures:). I am 63 years old and am fairly active. I walk 3-4 miles a day. Hope this answers some of your questions. I wish you all the best with your treatment. Caroline

[EZSZ in reply to CarolineBorucki]

Thanks Caroline. I'm 64, so close. Only H&P for now. How long has it's been for you? Thanks for the info and wishes, some here, best wishes.

[Sles]

I have been on those two drugs for two years. In addition to the symptoms mentioned by others I also experience many UTI’s. My doctor said that the drugs have thinned the protective lining of my urethra thus causing frequent infections. I am presently on a daily low dose of antibiotics.

[EZSZ in reply to Sles]

Ouch, sorry to hear that. I wasn't aware of this side effect. Can it recover?

[Sles in reply to EZSZ]

I don't think so. Just one of those things I have to learn to live with.

[Rhwright12]

Hi! Was on Herceptin Perjeta for 4 1/2 years. Had 2 brain lesions to cerebellum last fall…H/P doesn’t cross the blood brain barrier. So I got switched to Kadcyla. I didn’t have side effects with the H/P. Did 5ks and went to Disney…Not a fan of this one…fatigue and anemia (I guess that goes together)

[EZSZ in reply to Rhwright12]

Hi. How long ago did you switch? Are you doing well with Kadcyla? So sad to hear, wish you the best, maybe Kadcyla will keep you in remission for years to come.

[Nature613]

Hi EZSZ,Yes. I have been on herceptin since October 2005 when diagnosed with stage 4 BC. Initially, I was given herceptin with a bunch of other chemotherapy’s (taxol, carboplatin, and a few others. Then I was on arimidex and herceptin for 10 years . I switched because I was having issues with pain management. Now since 2017 I’ve been on fulvestrant and herceptin. I’m ER positive, Her2 positive with widespread extensive bone mets. I wish you all the best. 🙏💜

[EZSZ in reply to Nature613]

Dear Nature613, I am so grateful for your response which is so encouraging! 16 years? Wow, so pleased to hear. Hugs, hugs, hugs.May I ask a few questions?

1. Your age

2. I assume your lymph nodes were affected before it spread yo the bones

3. Was anything else affected, apart from the bones?

4. Are you NED (no evidence of disease) and if do, since when?

5. No repeated chemotherapy was necessary?

6. 16 years of Herceptin every 3 weeks, no problem?

7. Any side effects? Is the an accumulated damage?

Forgive my many questions. I can't seem to find statistics on who reacts well and why to Herceptin. I am on both Herceptin and Perjeta, after 17 Taxol treatments. Mine is in the pleura and peritoneum, with possible met on my right Femara head. I am 64, otherwise very healthy and react really well to the treatments. Perjeta is considered more toxic, but my oncologist says that the combination is more successful.

I can not tell you how happy I am to read about your success with treatments. My friend and I (she is on Herceptin only with bones mets) really needed to hear about you in order to hold on to hope.

Thank you, Dully

[Nature613]

Hi Dully,I am soooo grateful for this group of amazing, strong, supportive individuals!

Congratulations on finishing your 17 rounds of Taxol! I hope it knocked out those bad cells!!

I am 60 years old. I was originally diagnosed at age 37 years old with no evidence of disease. I had a mastectomy and no treatment. I have had no repeated chemotherapy’s. Presently, I get both fulvestrant and herceptin every four weeks. So far, no major side effects. I also had insomnia and the best approach for me is to try to exercise at least 1/2 -1 hour per day. Fresh air is so helpful. I also use a combination of CBD pills and a very, very low dose of an indica THC oil ( distillate or RSO orally). That relaxes me and helps with aches and pain. I also do gentle yoga/ pilates exercises combined with meditative breathing throughout the day.

I wish you and your friend all the best!!! 🙏 Hugz

[EZSZ in reply to Nature613]

Thank you Nature613. I use CBD/THC as well when needed. I exercise too, agree on that. Thanks for providing the information. So hlad you are doing so well. Best to you as well, hugs.