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Paclitaxel , Trastuzumab , Pertuzumab IV chemo update after Ibrance & faslodex quit working .

18 Replies

For anyone waiting to decide if it is time to move on to IV Paclitaxel I wanted to assure you that for me it has not been that bad. The side effects are tolerable . I have finished 6 rounds (12 infusions ) . It is a long day at the clinic on treatment day the first week I get all 3 medications with blood work and port flushes in between . The next week is Paclitaxel,bloodwork and flushes. It takes about 4 hours . The medications takes about 6 hours . I have been able to drive myself each time other than the initial treatment .

Side effects for me have been mild neuropathy in my figure tips mainly my right hand at beginning it was intermittent but now it seems to be a constant but I do not find it limiting . A little bit of nausea but the Prochlorazine works to ease it quickly for me . Fatigue , body aches mainly joints tolerable . Moodiness I find I can get unusually grumpy a day or two after treatment ( I think it was the steroids ) lol .I will blame it on them . I will also blame my appetite on the steroids , I want to eat all the time .I have put on about 10 lbs while taking this treatment .

But I just had scans and the treatment is WORKING , bone Mets are stable , nothing showing in the lungs and the liver Mets are showing significant decrease.

I am taking a month off treatment and will resume with the Pertuzumab & Trastuzumab after an echocardiogram .

I am looking forward to a little more energy , starting to work a little again, hair growing back , and getting outdoors more . I am feeling good , much better than I did before this treatment started. I still have not seen the Ears Nose & Throat specialist to see about regaining a normal voice , it has been 9 months of sounding very feeble and weak I am waiting for a referral from my oncologist to the E.N.T. That is how our “ universal health care “ in Canada works .

If anyone has any questions please ask , I am happy to share my experiences if it will help others and ease fears.

Luann

P.s. sorry for the mess of this post , the editing options are brutal today .

This picture is of my grand pup at my sons house . I love to visit especially in the spring .

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18 Replies
Red71 profile image
Red71

Your grand pup has a beautiful place to enjoy his strolls!

Thanks for the update. I’m glad that this combo is working for you but I wish your days weren’t so long! Let’s hope it keeps working for you! Elaine

in reply toRed71

I talked with the oncology nurses and apparently when I resume the Trastuzumab and Pertuzumab I won’t need to do blood work each time so that should take another 1/2 hr off. And going forward it is only once every three weeks , and flexible a couple days here and there. I have been told it is well tolerated. My figures are crossed

Norma1959 profile image
Norma1959 in reply to

I’m on that regimen and they do the blood work every three weeks !

in reply toNorma1959

Good to know Norma , how are you feeling with this regimen ? Did you have the Paclitaxel in the beginning ?Luann

Norma1959 profile image
Norma1959 in reply to

Yes I had Taxotere for 2 cycles only as I had an abcess in bowel as a result so they stopped chemo and I continued on the Herceptin / Perjeta , I also get Zometa for Bone met every 12 weeks. I am also on Letrozole as er positive as well . I get an echo every 12 weeks for ejection Fraction as Herceptin can affect this . In July I will be 2 years on this regimen . I get a drippy nose that’s the only side effect . So all good thank god . Energy really good .

in reply toNorma1959

Thank you for sharing your experience. An accessed bowel sounds extremely painful .

Joannaaaa profile image
Joannaaaa

Glad to hear things are going well and I hope you get to enjoy lots of walks in that beautiful area, the photo is lovely

ChrisVict profile image
ChrisVict

You are brave. Do you know whether your type has changed did you get some kind of Test for that before starting the chemo. I’m so glad to hear that it’s tolerable and life goes on. I’m on my last oral onc tells me. I was lucky enough to get a stable report this last pet. Nice photo did you place those beautiful flowers? You have such a gratifying Talent.

in reply toChrisVict

No not really brave , I had IV chemo 18 years ago and knew I would survive it . When I started in January I thought my oncologist said I would have 6 treatments and then I found out I was to have 6 rounds = 12 treatments , I was far from brave I pouted the entire treatment and cried on the way home.

But it is working and I generally feel better than I did while taking ibrance . I was on Ibrance for 24 months but I really didn’t feel as well as many other do on it .

I hope they find you a treatment that is effective and gentle .

If you go to an IV a chemo I highly recommend having a port put in for administering meds. All the best to you !

in reply toChrisVict

No I didn’t place the flowers , it must have been a previous owner and Mother Nature it was a beautiful surprise the first year he owned it . And continues.

I had a biopsy done last October that showed I had changed to HER positive , the node that was biopsied was in my neck area . I had had a CT in sept and it showed lesions in the liver and some nodes in my throat area . My previous cat scan in July didn’t show liver Mets .

Rhwright12 profile image
Rhwright12

Hi! Was on Perjeta Herceptin for 4 1/2 years. No major side effects...Did a couple 5K s and went to Disney twice..Planning number #3 for the fall...😀

in reply toRhwright12

Thank you for sharing your experience . That is so helpful and encouraging. I am assuming your current treatment is working well if you are doing a 5K.

Rhwright12 profile image
Rhwright12 in reply to

Hoping to get back to walking soon. Had WBRT in November for brain Mets and it knocked me out for about 6 weeks or so...Then got changed to Kadcyla which is Herceptin and another med. Perjeta doesn’t cross the blood brain barrier and won’t work on brain Mets...But this other one does 😀

ChrisVict profile image
ChrisVict

That’s a really extensive treatment stay strong and if you feel better than Ibrance that’s an improvement. I hope this treatment brings it down to a negligible level. You also seem to know how to enjoy and be thankful for the good things.

in reply toChrisVict

I say we don’t always have a choice in what happens in our lives but we do get to choose how we want to react , we can become bitter or better , . I choose to try to be better.

8576 profile image
8576 in reply to

Late chiming in. Don't know how I missed this earlier. Just love your attitude and your lovely picture. Thanks for sharing your perspective on living. Sounds very encouraging. I am the cup half full also.

Cheers, June S.

lynnhbtb profile image
lynnhbtb

Dear Luann, I'm so happy to hear the treatment is working. And, thank you for expressing that IV chemotherapy, while scary, doesn't have to be that bad. I've been trying to communicate that to those who are just so afraid of it's reputation they don't give it a chance. As you can presume, I've been on IV treatment for my TNBC for 2 1/2 years, taking a few weeks of breaks occasionally, or as the Onc. calls it a chemo holiday. It seems like yours is HER2+. There seems to be more treatment options coming online all the time. Enjoy the Spring! Lynn

in reply tolynnhbtb

Thank you Lynn for the validation that it may not be as harsh as one thinks . I have found some of those little pills can have a hell of a punch to the body in some not positive ways . 2 1/2 years is encouraging I hope you get many more with minimal all side effects .

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