Hi, I have started pertuzumab, just had 3rd of 4th before surgery. Alongside herceptin and docetaxel. I’m the first to have this drug in Darlington, Durham. Is anyone else having it? I am oestrogen and her2 ±. Apparently increasing a clear prognosis by 15-20%. Any experience if this anyone? X hugs to all
Hi Auntyjulie,
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Best wishes,
Bonita
Hi Auntyjulie,
sorry, no experience of this drug, have heard anecdotally it can be very effective…very best of luck with it.
just wanted to say hi, and to wish you well
Hugs,
Moijanxx
Thanks hun x
Julie, did you see this thread? Not very long, but interesting.
Miijanxx
Thanks
Julie
i hope you are doing well?
I think I am early on this too as neo adjuvant - I am Her 2 + and er+ too I was due to start FEC T them it was delayed a week and changed to this regime following my MRI.
How have you found the treatments? I had looked up SE for FecT then this came a bit out of the blue on Monday.
i had my first session on Tuesday/ Wednesday this week.been ok so far except not sleeping and strange taste. Although my chest feels a bit tight this morning like someone is sitting on it
The Onc suggested the side effects were potentially worse, but I met someone who had this for metastatic, who has managed well ( and has an amazing positive attitude)
have you you had nail issues( have you painted them? ) chemo nurse said it is not proven but can’t remember a painted nail actually coming off with Docetaxel.
Having started active treatment is good - but I am still struggling with the concept that this is real - I am not until now “Ill” except uncomfotrtable from the multiple biopsies and Picc line insertion etc. I guess it is a coping thing.
Are you having FEC post surgery?
Sending a big hug back!
Sue
Hi Sue I was diagnosed the 22nd of September. they put me on a course of fec-t I’ve had 3 fec and when I was due to start the t I was introduced the pertuzumab. I am the first in Darlington to have it and quite lucky as I cannot have it before surgery. after chemo I will have surgery and then 15 radiotherapy sessions continuing to take herceptin until December. it toke a while to accept that this is real and happening to me and not just a really close friend! side effects for this second lot of chemo sore mouth, bloody nose, tiredness aching bones, but not very often and forgetfulness. I also heard about nails for the first t had toes and hand painted, the paint has been off the ties for the last two sessions and I haven’t lost any nails. I will say however that they thin and break easy but are firmly attached to the nail bed. What town are you in? How are you coping?
My mum has just been told she has to have pertuzumab for the rest of her life along side herceptin. Are you having to pay for your treatment of the drug? We are in west wales and have been told it’s not funded by the NHS so we have to pay 5000 to start and 2500 for every dose every 21 days.
Wishing you the best
Gabriella x
Hi, I’m getting it free through the NHS, I’m the first in my area to have it however was advised that I can only have it if not had herceptin or surgery. I’ve had 4 along with the herceptin and my surgery is in 6 weeks. Hope you do get sorted, it’s a lot of money! Pls let me know
Hi scotty, I’m finding the side effects worse than the fec, particularly thrush, nosebleeds, tiredness. On a plus note my hair is growing back. I’ve had the 1 Gcsf injection apart from the 1st fec, and for some reason decided not to give me Gcsf on the 1st T, needless to say, ended up in hospital for 3 nights
Hello Auntyjulie, just come across this thread, so sorry for not responding sooner. Sorry for long rambling post but hope it is of help.
I had three cycles of Pertuzumab (Perjeta) with Taxotere (Docetaxel) and Trastuzumab (Herceptin) as part of my neo-adjuvant chemotherapy from September to December last year. As Pertuzumab wasn’t available on the NHS when I started, I had to have my chemotherapy privately, which was horrendously expensive.
But it was worth it, because my tumour shrank to almost nothing. It wasn’t quite a complete pathological response, but it made a huge difference to the surgery. Following WLE and SNB in January, there is no discernable difference in size between the affected breast and the normal one. It’ll probably shrink after radiotherapy, but the outcome will still be better than it would have been without the Pertuzumab.
Regarding side effects, it is difficult to say which ones were caused by Pertuzumab and which were caused by the other drugs. The worst SEs I got from the cycles when I had it were: sore, swollen throat, sore mouth and dry cough (started around Day 4 and went by around Day 11 each cycle), hot flushes, dry, sensitive skin/ rash and grotty nails (still a bit of a problem but gradually getting better), nose bleeds (went away about a week after the final cycle ended), diarrhoea/ bleeding (went away before the end of each cycle) and fatigue (still affected a bit but not much). I also lost pretty well all of my eyebrows and eyelashes during this part of the chemotherapy, but my head hair started to grow back. I only ever had mild joint/ bone pains (nothing that wasn’t controlled by Paracetamol) so I guess I was lucky in that respect at least. It could be caused by T as well as the GCSF (I had Neulasta instead as I went privately, which is more convenient but can be just as bad at causing pains). A tip I can share on the pains is to start taking pain relief before you have T. I was given a couple of Paracetamol in the hospital before the T infusion. The nurses told me it is better at controlling the pain if you take them before the pain kicks in, and I found it so.
Looking up the SEs of Pertuzumab I suspect it contributed towards the cough, nose bleeds and skin problems. It probably also made the diarrhoea worse and contributed to the bowel problems, but the oncologist thought the Taxotere was the main cause of that, as it can attack the lining of the gut. I was worried about the bowel problems, particularly the bleeding, so to be on the safe side I was referred to a colorectal surgeon, and ended up having a sigmoidoscopy the day before my surgery! Fortunately nothing was found except some small piles (sorry if TMI).
You can’t pin the fatigue on Pertuzumab, as it is a general cumulative effect of the chemotherapy. The only remedy is to do some gentle exercise as and when you can manage it. It will be difficult to motivate yourself at first as by the end of the chemotherapy you may not be able to do anything much, but try to do a little as soon as you feel a bit better. I began to feel better about a couple of weeks after the last cycle ended, a week before my surgery (just as well!), so I hope you will too.
I found this information about Pertuzumab online which you may find helpful: medicines.org.uk/emcmobile/search?q=pertuzumab&offset=1&dt=1,2
Scotty66 - forgot to mention, your single bone marrow jab is probably Neulasta, the same one I had. It is more convenient than GCSF and does the same job, but the downside is it doesn’t start working straight away so you need to be a bit careful of infections.
Auntyjulie - forgot to ask, did you get anything for the thrush? If not, ask for Fluconazole or a similar anti fungal drug - you should be able to get it from the hospital or your GP. They should also give you something to relieve the symptoms. I had Fluconazole prescribed to me every cycle as a preventative, and I never got thrush, but it was probably a close run thing the last cycle. When prescribed as a preventative you need to start taking them on Day 10 with FEC and on Day 8 or sooner with T + targeted therapy combo. It is a 7 day course of tablets, you take one a day.
You will also have found out by now that the SEs of the T/Trastuzumab/Pertuzumab combo don’t kick in straight away, but around’ Day 4. It’s partly because the steroids mask the effects. At first you think, this is great, much better than FEC, then wham!
The first thing I noticed was the sore mouth and taste changes (forgot to mention them as well, sorry!). I completely lost my appetite on Day 5 of the first cycle, then it came back, and never completely disappeared again. But I did go off quite a few things, mostly sweet things, and there were further subtle changes over the next two cycles. The taste changes reversed soon after chemotherapy finished.
Hi olddawn, sorry for the delay, in hospital since Monday. Yes got thrush everytime, surprised its not listed. I was not offered any preventative and just tried to cope with caneston as best I could! Chemo all done now so too late lol. I’m in hospital cos liver function Alt and alp are high…going for an Mri today. Well at least chemo all finished now. Jus got surgery and radiotherapy to look forward to. Hugs to all x
So sorry you ended up hospital, Auntyjulie, and hope you are feeling better now. I also hope that the Pertuzumab did the trick and massively shrank your lump, after what you have been through these last few months. The operation will hopefully be less of an ordeal - onwards and upwards!
Hi Julie
I’m asking for this combination… how are you getting on with it?
Zena xx
Hi, all done now! Difficult to tell the se as having docetaxel and herceptin also at the same time