Perjeta, Taxol, Herceptin

Hi bluebell19

I had 16 weekly doses if taxol.  During the first infusion I had some sort of reaction..they reduced the flow so it took twice the length but it solved the problem.

Reaction wise over the 16 weeks the soles of my feet would get very hot, I had a little neuropathy in my hands and was very tired.  However  the tiredness could be down to the steroids I was on.  All in all for two/three days I kept myself to myself (I have three teenage girls.. hormones).

Like all of us I would prefer not to be on chemo but I see it as a means to an end ..life

Have a lovely Xmas and good wishes for 2019 

Hello Rchapel

                        Thank you so much for the reply, I will be having these 3 over 6 months in 3 weekly cycles. I must say you did well considering it was given weekly! I wondered about the infusion as I have problems even with dye for scans if it is administered too quickly so I will mention that to them. 

tiredness, although horrible is not too bad for me as I do not have a family to care for, you must have had your hands full with 3 teenagers!

I also will be on steroids but just for the 3 days when I receive my treatment, it took me a long time to come to the decision to have treatment but when push came to shove I decided I owed it to myself to take everything offered.

The reason I put up this post is that I can not seem to find anyone who has had this trio of treatments so the only information I can find is from trials even my Oncology team and my heart consultant have not had experience with Perjecta yet and I prefer the input from another patient when it comes to tips

Once again thank you so much and Have a really lovely day 

Best wishes 

Joanie x

Hello Bluebell 

I had the combination you’re going on in 2016 I had 12 weekly taxol and then herceptin and perjeta. 

I remained on three weekly herceptin and perjeta until August 2018 had some side effects but it’s very doable and still able to enjoy life .

I have been having Kadcyla since August 2018 again a doable drug obviously has some side effects,unfortunately the neuropathy I had previously came back so I’ve had a few weeks break from treatments to allow the neuropathy to settle down ...I had treatment yesterday a reduced dose which hopefully will help. 

I hope the combination of herceptin and perjeta work well for you ...I have heard of some people being on it for several years. 

All the best to you for 2019

leverett ( Bren) xxx

Hi Bren 

            Thank you so much for the reply I was starting to worry I would never find anyone on this combination! I am been given the 3 drugs together for 6 months and then the chemo is stopped and the HER drugs for as long as I live or can tolerant them 

I have to admit I am very nervous about the side effects as I suffer side effects from the most basic of medications however I am hoping they won't be too bad and I will be able to function also infections are another cause for concern. If you have any tips I would be most grateful when you have a minute 

Thanks again and here is to a very happy new year 

Best wishes Joanie xx

Hello Joanie 

I’m so pleased I am able to help in a small way it seems that you are being put on the same drugs as I was initially. 

Like you I tend to react to most drugs one way or another and in the past have avoided taking anything unless absolutely necessary. 

The side effects were for me whilst taking taxol as well were neuropathy which is why it was stopped at 12.

With the herceptin and Perjeta I had bleeding nose ( sounds worse than it is) headaches tiredness...lots of niggly irritating symptoms but I got to know over time when my bad days were going to be and I made the very most of the good weeks in between I still do that on kadcyla. 

Most importantly is to rest when you feel exhausted but to also walk and enjoy life ...it’s a balance really I’ve always been very active so it was hard for me to just be, now I know my limits and go with them. 

Piease do contact me Joanie if I can help in anyway please try not to be scared of the drugs as a good friend and breast care nurse once said to me never say “I have to have this drug “instead say “I need this drug” just a slight change in words but very powerful.

its easy to see the drugs as our enemies ( I know I do sometimes) as they can make us ill in other ways but ultimately they are keeping us here and still enjoying life. 

Take care and keep in touch 

Bren xxx

Hi Joanie,

I started the same combination as you at the beginning of December and I've had two doses so far. Just wondered how you are getting on with it?

I too thought long and hard about whether I wanted the treatment, and initially refused it but was persuaded it was the best way to proceed.

Katie x

HI, I'm due to start with this combination later this month having just completed 4 cycles of EC. I am due 4 x 3 weekly cycles and am very worried about the SEs, so am interested to see other people's experiences.

I have coped OK with the EC but each time took longer to bounce back. It was a full 10 days on the last cycle before I felt anything less than completely poisoned and exhausted, I'm glad that was the last cycle!

Hello Couttleberry 

if you are having the herceptin and perjeta without chemotherapy it isn’t nearly as bad and actually very doable,of course there’re always side effects but it seems to me you’ve been through the worst having chemo and this combination is much kinder. 

It isn’t chemo so doesn’t have anywhere near the horrible side effects we are all subjected to with chemo. 

What I will say is contact me if you need to and if I can help you with my experience of these drugs I’d be delighted to do so. 

Wishing you all the best 

leverett ( Bren) x

Hi Joanie, It’s my first time replying to a post so hope this is in the right place! I started the combination of 3 in November and I finish the Taxol in February. I am then to carry on with the Perjecta and Herceptin indefinitely every three weeks. I’ve got two to go and am having a Ct scan in a couple of weeks to see if there has been a reduction in the tumour. My Oncologist prescribed 75% Doxetaxol as I have some neuropathy in my fingers at times. Other than extreme tiredness at times, a few stomach upsets and sore, bloody nostrils!! I have been fine. Hopefully you will be too. I was very conscientious of taking my temperature at first and it did spike twice - I attended the Hospital, but blood tests were fine. I take it maybe daily now if I remember. By the way I hope you’ve been offered the cold cap, I have been using it and so far have kept my hair so that’s a plus. My nails seem to have stopped growing though and I’ve lost some body hair!!
Very best wishes to you, let me know how you are - 

Prude xx

Hi Joanie and everyone else. 

This is my first time joining in on someone else’s conversation. It has been very interesting to read all the different replies. 

I am due to start docetaxel, Pertuzumab (perjita) and herceptin soon so it is quite reassuring to know how others have reacted and are feeling. I am also on letrazole and getting denosumab injections. Although I have had the chemo and herceptin before the Pertuzumab is new to me. It has just become available in Scotland. I am nervous about it but also glad as I will take every option available to me. I’m hoping once it all kicks in I will start to feel a bit like my old self again, fingers crossed anyway.

I wish everyone good luck on their journey and hope to see how you are all doing on here.

Many thanks Helfin65