pertuzumab &trastuzumab every 3 weeks after completing paclitaxel treatments can anyone share how they tolerated this treatment ?

[Thatflowerlady]

I am curious as to what others have found . My oncologist says it is very well tolerated . Has anyone had “ bad days” after infusion day ? Fatigue etc. .? Please share any tips .

Thank you

Luann

That flower lady

[blms]

I love when they say it is well tolerated!! Individually Meaningless! Tell me again where you are being treated? How long did you take taxol ?

[Thatflowerlady in reply to blms]

I do prefer to hear from other MBC patients that have first hand experience . I think many patients down play how they are feeling even to their Dr .

[blms in reply to Thatflowerlady]

Yes I sgree

[blms]

Sorry I know you are in Canada!!

[Thatflowerlady in reply to blms]

I am being treated in London Ontario Canada

[blms]

So taxol after how many months isn’t working?

[Thatflowerlady in reply to blms]

I have completed 6 rounds or 12 Treatments of paclitaxel. I had a CT scan and a bone scan in the past couple weeks . The scans showed a good response to the Paclitaxel.

[blms in reply to Thatflowerlady]

Was 6 months the max they were willing to give you or did it stop working and you get progression

[Thatflowerlady in reply to blms]

The 6 rounds / 12 treatments is what is recommended here . It has worked well .

[blms in reply to Thatflowerlady]

Do you consider one round to be three weeks of treatment in a row?

[Thatflowerlady in reply to blms]

1 treatment a week , Two weeks in a row and then 1 week off .

[blms in reply to Thatflowerlady]

Oh that was confusing to me. IMine is three weeks in a row one week off. My dosage will be reduced fir next week. But still 3 in a row

[blms in reply to Thatflowerlady]

So would t hey not let you take more taxol?

[Thatflowerlady in reply to blms]

It is what my oncologist ordered . I believe it is a standard treatment in ananda for triple positive metastatic breast cancer that has progressed .

[Staysha]

I am on herceptin and perjeta. I have had 35 treatments. I am really tired the day of. I try and have it around 9:30. You will still get the iv Benedryl. I really think that’s what makes me tired. I have diarrhea a lot and I blame it on this treatment also. It is manageable. I can honestly say it is a breeze compared to some of the other treatments. I have been on vacation, go to the pool, ride dirt roads on a side by side, have dinner parties, work in my yard, etc. I really can’t tell I’m on a treatment except for the day of. I hope I can continue on this treatment for a long long time. I hope you tolerate it well also.

Best wishes,

Stacy

[Thatflowerlady in reply to Staysha]

Thank you so much Stacy I really appreciate your response . I also have found when I did the treatment with the Paclitaxel and the benedryl I could hardly keep my eyes open . I was wasn’t sure if I would have benedryl now . Good to know so I can plan my day . I hope we both get a long , long time on this one .

Luann

That flower lady

[Staysha in reply to Thatflowerlady]

I know what you mean. It practically knocks me out but by the time I’m done with the last bag I’m good to go. I drive myself to and from the treatment. It’s about 45 minutes each way. When I get home I nap pretty much the rest of the afternoon. The next day I’m back at it!!

[Thatflowerlady in reply to Staysha]

How long does your treatment take ? Do they do blood work each treatment ?

[Staysha in reply to Thatflowerlady]

By the time I get there, they call me back, take vitals, get me all hooked up... it’s about 2 hours 30-45 min. Each bag is 1 hour.

I don’t have blood work each time, just every so often. It seems random to me but I just recently had radiation so my onc has been checking my ferritin level through bloodwork. I don’t know why???? Does radiation cause you to have low iron?? He had to cancel my last appt where I would be asking these questions because of a family emergency. I’m not scheduled to see him now until Jun 21.

[Thatflowerlady in reply to Staysha]

I am not sure about the radiation causing low irons . I would call your oncologist office and ask .

[Norma1959]

Hi , I’m in Ireland and the standard protocol for her 2 positive is taxol or taxotere for 6 sessions then Herceptin and Perjeta for as long as it works every 3 weeks . if you have bone Mets you will also have Zometa or similar every 3 months . You will also get an heart echo every 12 weeks . My bloods are taken every 3 weeks . I go in at 7.30 , they take my bloods , weigh me and I go off for breakfast. Back at 9 and usually hooked up by 10 , . Finished by 12.30 . I might take a nap that day as I’m up so early and that’s it . I walk / play golf/ tennis and socialise, Here in center parcs at moment , lots of cycling / archery / canoeing. ( didn’t do zip line ) as felt dizzy last time here ( coward ) . Eating and drinking , playing with the grand kids , BTW I’m on letrozole as I’m er positive as well . I get some cramping in my fingers from this .I’m going back to reform Pilates next week as restrictions lifting here . This protocol is a lot easier than chemo but the difficulty I have is getting my head around treatment for life and I have an incurable cancer . Think I need to do mindfulness or something . That’s my experience . I don’t want to trivialise it but it is ok , hopefully you will have the same experience. I just hope I get no progression and can stay on this forever , ( 2 years now )

[urthmothr in reply to Norma1959]

I had to change my mindset from "incurable" to "'chronic." It is treatable, but does not go away. My routine is similar than yours, but I might have more problems with fatigue because I am 75, and have never been athletic.

[Norma1959 in reply to urthmothr]

I’m 62 not particularly athletic but enjoy sports 😂 I’ll take onboard chronic thank you .

[blms]

Yes Benadryl knows you out for about 4 to 5 hours

[urthmothr]

It's very much an individual journey, depending on your own body and your tolerance for discomfort. I must say that it's much better than continuing the paclitaxel! It took me about 12 weeks for my hair and nails to start growing back, and my intestines to return to near-normal. Almost a year later, I still have nails that haven't returned to normal, and have numbness in my fingers and feet (from the Taxol). Digestive problems and fatigue are also connected with one of these pertuzumab, so I still have to be careful what I eat. I have to pace myself. I'm driving again, but not when I'm tired. I'm gardening again, but only in my own yard, where I can go in and rest without having to drive home. Now that I have the COVID-19 shots, I drive to places in my neighborhood, but not far, and for light shopping.

[queeneee in reply to urthmothr]

Hello, sorry to hear about your side effects urthmothr... were you on taxol for a 1x every 3 weeks dose or weekly dose?

[urthmothr in reply to queeneee]

Weekly dose for 12 weeks, then no more after clear scans.

[Rhwright12]

Hi! I was on this treatment for 4 1/2 years with no problems…Did a couple 5 k…Hope u enjoy a long time no side effects and no progression…😀❤️

[CarolineBorucki]

Hello! This is the same treatment I get every 3 weeks though now I believe I’m getting some generic drugs. I have been doing this for over 6 years and have few if any side effects. I did ask a few years ago if they could stop giving me Benadryl and they said ok!!! It’s so nice not to feel that groggy the day of treatment. Maybe you could try that. I wish you well! Caroline

[Thatflowerlady in reply to CarolineBorucki]

No Benadryl for me today so I wasn’t sleepy . It wasn’t offered . Everything went well so far .

[Malibu5]

I have been on that since January 2020. I am in a trial so with those two I take a immunotherapy. The two drugs are easy to tolerate. I can feel slight fatigue the day after, but it is very easy to deal with. I think the biggest problem with the herceptin is making sure your heart stays strong. They check that every 3 months, my numbers have gone up and down with that. Luckily the heart can rejuvenate. Good luck 🙏🏻