Hi ladies. I’m guessing you all either saw the news articles on the above or someone you knew told you about them. Does anyone actually have any experience of having been on the trial? Is is possible to have this drug if you have previously been on Herceptin but it wasn’t very effective, or have I already burnt my boats on that one?
Grateful for your thoughts.
xxx
hi I am starting a trial with herceptin and pertuzumab but also with capecitabine. I have seconday BC. I was on paclitaxol and herceptin last year. The paclitaxol was stopped early because of neuropathy but was working well therefore I continued taking the herceptin until recently when tumiour markers and ct scan showed disease was spreading again I was then offered the trial. Hope this helped. x
Hi, thanks for your reply. I had Docetaxol for six course together with Herceptin, then carried on with Herceptin, but stopped after 3 scans of gradually deteriorating results. I was then put on Capecitabine and Lapatinib, but have now stopped this after less than 6 months as it has definitely stopped working and the cancer is growing quicker than when I was just on the Herceptin. So maybe I’m in with a chance with this trial when the time comes. At the moment, I am taking nothing and due to start on Navelbine next week. Wish me luck. And good luck with the trial. Top tip for Capecitabine, get your GP to prescribe either Flexitol or Eucarin cream with high dose of urea. Really good for your feet. xx
Hi I really hope you have better results with Navelbine. LIfes a bitch isn’ it. We go from one round of treatment to another always worrying if its working. I’m so fed up at moment thinking about the SEs of this trial and will it be worth it. But then I feel ashamed of myself for being so negative. Never mind i’m sure i’ll get over it. Thanks for the tip on the cream. I’v had alsorts of probs with hands and feet so I’ll give it a go. Take care . X
hi just wondered what hosptial you are being treated at?
the reason is from what i understand pertuzumab seems to be a wonder drug? or am i just hopeful? i have lung,liver and bone mets. currently having herceptin 3/52 and oral tamoxifen finished docetael in july 2012.
intially diagnised breast cancer 2005 aged 34. have just joined forum as having a very bad/sad moment!!
i would like to join a trial that gives pertuzumab.
Thank you and good luck
Hi louise this is the 3rd time I have tried to answer your post it keeps vanishing grrrr. I am so sorry you have had such a rotten time, being dx at such a young age is awful. I am under Newcastle cancer care. i won’t know if I will get the pertuzumab part of the trial until tues as it is picked randomly. I hope I do as it has had such good results with primaries unknow how it will work on secondaries. But I live in hope. Try and keep hopeful the bad days are bad but We still have good times too, take care.
fingers crossed that you get the quailty stuff.
Thank you for repiying so promptly, know what you mean about trying to put posts its annoying its taken me ages to sort it out!!
so Good luck Louise
Hi everyone. Just come across this so not sure if anyone will pick up on it but just wanted to post my experiance so far. I was orginally entering into a trial for people with primary breast cancer to take Pertuzumab but after many scans the cancer was dicovered in my liver (albiet small less than 1cm). So I came of the trial and am now receiving Herceptin, Pertuzumab and docetaxol. Iam under the Newcastle under Lyme teaching hospital of which I am very grateful for because they seem to be very well informed and very up to date with treatments. They had to apply for funding for the Pertuzumab which we recieved very quickly (they informed me I was the first to recieve the Petuzemab outside of the trials, so again very grateful and hope that it works). The hospital have also had trials running and my onc is very excited over the results so far, but then both the oncs I see are always positive. I have just had my 2nd treatment and so far manageable SEs, a rash over my face and neck and chest( but that went after about 5 days) , tiredness, flu symtoms for three days in the second week. So this time I have Piriton and cream for rash and the rest is manageable, so far so good. If I can help you with my experience so far with this drug please don’t hesitate to post or message me. Take care xx
I’m told Pertuzumab is only available alongside 1st treatment with Herceptin + Chemo, based on it’s NICE licence and hence funding.
I started my treatment in Dec, so unfortunately was a couple of months too early to qualify… However, first treatment has gone well for me and I’m hoping the posiiton may be revised over the next few years… Sarah
Hi Sarah, Think your right about the Pertuzumab being revised. Looking at some of the American sites alot of the ladies have already had various treatments and have still managed to get the Pertuzumab (and it works well for them). Angela.
Thought I would join in as I am also getting Pertuzemab, Taxotere and Herceptin. Elliedog think I might have posted on liver mets thread but I don’t come on often and cant find it… I am being treated in Ireland and have to pay for the Pertuzemab, my onc is hoping it will be available “through the system” before the end of the year. I too get a rash on my face which lasts about 5 days but last time the rash was really bad so I have been put on oral antibiotics Minocycline and a cream Rozex and so far this cycle (12 days in) not one spot!
Had Ct scan after treatment no 3 and the tumour on my liver had shrunk from 6.7 x 4.5cm to 4.6 x 2.5cm, so heading in the right direction!
Just like Elliedog the side effects are minimal, other than the rash some tiredness which is probably the chemo.
I hope that the powers that be make Pertuzemab available soon for everybody. I realise that I’m very very lucky that we have some savings to pay for it, but if we don’t get it free by next year we won’t be able to pay for any more and then it might have been a waste of money! Maybe we should have blown the lot on a holiday instead!
To be honest I’m not sure how effective the Perjeta will be if chemo doesn’t get rid of the tumour, also some lymph nodes around the liver are also affected. Anyone know the answer?
wishing you all the best with treatment.
Sue x
Hi Sue.Good news your liver tumour is heading in the right direction after only 3 treatments. I saw my onc today and she still doesn’t want to scan me until the end of the 6 treatments. I have my 3rd treatment tommorrow hopefully if my white blood cells are up. My last treatment SE were very few, no rash this time, didn’t feel very tired, just carried on as normal really even went away for a weekend with OH. Today she said she just wants me to do the 6 chemo Pertuzumab and Herceptin and then just go onto the Pertuzumab and Herceptin. She is very positive about this drug and also said on average Herceptin works for 5 to 6 years and in some ladies longer. She then said that there are many other treatments out there and more coming out all the time, which is good to know.There are some ladies on the American site that are now NED after being on the Petuzumab, lets hope we can follow in their footsteps.
My hospital applied to a cancer charitiy for funding for the Pertuzumab which they will fund for as long as I need it. Is there a charity or a way in which your hospital can apply for funding on your behalf. But I do think this drug will soon be used at many hospitals soon because the oncs seem to like it. So fingers crossed it will be available soon at your hospital then you can spend your savings on a good holiday. Hope you continue to do well on your mix and if I can help in any way please message me or post. Take care Angela x
Hi ladies, I haven’t posted for some years (originally dx 2007 age 34, now secondary diagnosis shortly after my 40th birthday). I have lung and bone mets and a stray cancerous lymph node in my neck. I have been put on Docetaxol x6, Herceptin and Pertuzumab. I had confirmation last week that the lung tumour has shrunk by half so at least I know that this hell I am going through on chemo is worth the effort. Can anyone tell me that it does get better once the chemo is over?? I have just had my 4th chemo, with 2 more to go and each bus that hits me is bigger than the previous time! I have been told by the onc that Herceptin and Pertuzumab works very effectively as a maintenance drug but as it is so new, I’d love to hear from others on this regime. Is there life after chemo? x
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