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Pertuzumab

nicky08
Community Champion

Re: Pertuzumab

Hi Belinda 🙂
I saw your news about starting Taxol on the new read you started, sorry to hear that you will be back on chemo but I know you thought it would happen sooner or later. I will be in touch but have had a very busy 'hospital/s' week plus catching up after Christmas so not had much time. Yes, I was very pleased with my latest appointment, all sounding very positive heart-wise, just have to hope the chemo has also done its job!
Take care
Nicky x

belinda
Member

Re: Pertuzumab

Good to read your heart news Nicky. I will be starting weekly Taxol soon, been assured it's heart friendly. X
nicky08
Community Champion

Re: Pertuzumab

Many thanks to you all for replying and sharing your experiences, it really is helpful and gives me a bit more awareness than if/when I have to face the question of more chemo. Although I have tolerated it reasonably, and this could be as I was on a reduced dose, I have felt increasingly tired each cycle and the last lot of blood results showed my wbc, neuts and haemaglobin had all dropped significantly whereas they had all been quite strong for the other 5 cycles. I did have good news yesterday when I went for my heart check up though and my heart function is continuing to be normal and in fact got better since the last echo. This is all down to fantastic (NHS) work at The Brompton hospital in London who got me to the stage of being able to even have this treatment after I'd had heart failure from my previous chemo back in 2008. Can't thank them enough but I'm also a good research case for them so I feel I'm giving a bit back to all the other ladies suffering from cancer treatments which affect the heart. Off to the dreaded CT scan soon, hoping not to come out feeling like a pin cushion as they try to find a vein, with results at the end of next week. I'll let you know how things are once I find out.
Thanks again for all your help, including the watery eyes, seems they'll be with me for a while yet 😞
Nicky x

madge1
Member

Re: Pertuzumab

Hi Nicky,
I only had one lot of the docetaxol as I had a severe reaction to this treatment, but decided to continue with the herceptin and pertuzumab as I had read of the good results from being on these two treatments and the oncologist recommended this. I am having my 5th treatment tomorrow. I'm sorry that I can't help you much !!!
I too have bad itching, especially on my arms !!!!! A spotty face which I've never had as well but I put that down to the exemestane !!!!
Wishing you well.
Love Julie
Xx
LemonDrizzle
Member

Re: Pertuzumab

I've had itching which is getting worse despite antihistamines but never realised it was the Pertuzumab. Been convincing myself it's something drastic to do with my mets so thank you for this info, Ange. Looks like eye problems are a common side effect.
LD x
Chocolates
Member

Re: Pertuzumab

Hi Nicky, I have bone and lung mets. I had 7 doses of docetaxol - the 7th was a reduced dose as I was struggling so much. Onc said 8 but just couldn't do it anymore. I finished in May and at that point still had tumours in lungs - since then on p and h I have become ned. It took a further 6 months for that to happen. I know of ladies who had tumours who didn't have the docetaxol, just the p and h and they are also now NED from lung and liver tumours after 2 years of treatment. It's a difficult one - in hindsight I wished I'd stopped the docetaxol sooner - my quality of life was appalling - never again - but it's a big decision. My family begged me to do more, my onc said enough and I was so relieved. I'd told them no more but the pressure was awful. It seems to be a good combination - saw a recent medical press release saying they were more excited by results of just h and p than tdm1 kadcyla which I thought would be my super treatment but perhaps not anymore.
Re the eyes, I suffered just like you. If did take about 6 months for them to recover but you will get there. Pm me if you want any further info.
Hxx
elliedog
Member

Re: Pertuzumab

Hi Nicky
I did do 6 treatments with the chemo but I do know many that have had 8 or more treatments with the chemo (with good results). I was lucky as my scan showed only scaring in my liver at the end of the 6 PH and docetaxel and my last scan in March last year continued to show NED. My onc only wants to scan me once a year now as he feels I have responded well to treatment. I am monitored carefully through blood tests, how I feel and examinations every three treatments.I have been just on P and H plus tamoxifen for the past 15 months. The watery eyes problem took about 6 months to carm down after chemo however I do now need glasses to help me read now but that could just be my age (44).My worst side effect comes from the Pertuzumab which is horrible stinging itching however its improving as time goes on. Overall this has been a good treatment for me and I hope it will continue to be for a long time although the onc has suggested that in time we should talk about taking the Pertuzumab away. I generally feel well (hair grew back in better condition and skin is healthy looking now plus everyone around me seems to catch all sorts of bugs where as I haven't caught anything since finishing chemo which is incredible as I work in a school )and to be honest the only draw back at the moment is going for my infusion every 3 weeks.I hope this helps a little but if you have any questions pleased let me know.
Ange x
LemonDrizzle
Member

Re: Pertuzumab

Hi Nicky
Originally the plan from onc was to definitely have 6 cycles of Docetaxel but probably 8. Unfortunately I only managed 3 due to the toxicity. However, I did tell onc that I would continue with it for as long as I could if necessary but decision was made to stop for my own health. Primary and mets all shrunk when having all three drugs and have continued to shrink slightly or remain stable since being on H and P only. Hoped for better results but after stopping docetaxel it's probably as good as it gets. Next scan is in Feb, so will see then what is happening but onc has said that I will stay on H & P until it stops working.
As for my eyes, well they have suffered a lot through this treatment. Although the watery eyes have more or less cleared my actual vision has been affected and they are very sensitive and itchy so can't wear eye makeup.
Hope this helps
LD x
nicky08
Community Champion

Re: Pertuzumab

Hi Ladies

I hope you all had a lovely Christmas and New Year and were able to switch off a bit from the 'C' part of our lives.

Now I am back to the real world I have a couple of questions that I'd like to ask and as this seems the only dedicated thread to Pertuzamab I thought this would be the best place to ask them. Also, when fergal jay has asked questions about her Mum's treatment there's been a good response from ladies already on this combo or have been on this combo (P, H and T) and I'd like to tap into your experiences if you don't mind.

I am due a CT scan this week to see how my liver mets have responded to the 6 cycles of P, H and T This I was expecting but what I wasn't expecting was my oncologist saying at our last appontment (just before cycle 6) that I could have 2 more cycles of Tax if needed.  I know one of you ladies (forgive me for not remembering who, I'm blaming chemo brain here Smiley Wink) was also told that 8 cycles could be given but I had expected 'only' 6 and had prepared myself for this.  Obviously if it will make a difference to the overall outcome then I'd have the extra 2 but, with Christmas and New Year interfering with scan appontments etc I will have had a 6 week break from chemo before restarting and I'm not sure I can face going back onto it, in the meantime I've had one cycle of P and H.  Did any of your oncologists suggest you have 8 not 6 cycles of Tax?  And, if you 'only' had 6 did any soft tissue tumours respond completely to the chemo ie NED or did you still have some evidence of lesions before going on to P and H?  Have these continued to be stable or get smaller once you went onto P and H alone?  I'm only asking as I need to think about what I would want to do if given the option to have more chemo  and will be dependent on my CT results.  I know the CLEOPATRA trial from which the results have come from, was based on 6 cycles of chemo (correct me if I'm wrong) so I would like to know if anyone had more chemo cycles.  I also know that several of you are on P and H when you weren't able to have the chemo part of the treatment and that these two antibodies have been getting good results in their own right.  A bit of a dilemma if I get asked what I want to do, which has happened before, and I'd like to have some additional information and more imprtantly experiences from ladies who have been on these drugs, not just the facts from the trial itself.

My second question is about some of the side effects I get, particularly watery eyes - which drive me nuts!         Did any of you have this whilst on the chemo part of the treatment and, if so, did it stop once the chemo stopped?  Or is it a side effect of P and H?  I can almost deal with some of the other, more expected SEs, but this constant watery eye SE really does get to me especially when I'm on my 10th tissue of the day!

I hope this gets seen/replied to, and don't want to hijack the thread, and may start a separate thread if it gets lost.  Many thanks to anyone able to help.

Nicky x

madge1
Member

Re: Pertuzumab

Hi Ladies,
I had a lovely Xmas, didn't have to do much as went to my mum's for both days as my sister and family came down to celebrate!!!!! Can't believe it's been a year since my double whammy diagnosis and so much has happened, but I'm here to celebrate a few more yet!!!
Wishing everyone a Happy New Year !!!!!
Love Julie xxx
fergal_jay
Member

Re: Pertuzumab

Hi all hope uv had a great Christmas x
helen44
Member

Re: Pertuzumab

Hi, I started Herceptin back in June after my op to remove tumour on sternum showed I had changed to Her2 +. I wasn't given pertuzumab as it wasn't considered 'necessary' at the time. CT scan in October showed stable bone mets but 2 liver lesions so I am now 3 cycles in on docetaxol. I asked about pertuzumab but was told I could not have it because I didn't start it with herceptin at the beginning of treatment -apparently it's not going to be funded in that way in the near future. So I can't have it just because I had herceptin on its own. Doesn't make much sense to me xx
fergal_jay
Member

Re: Pertuzumab

Thanks both yeah its the fear of no.chemo but hoping to see a good response on stans fingers crossed she is also possibly getting hormone treatment too not sure details tho
LemonDrizzle
Member

Re: Pertuzumab

Fergal, I've had 5 or 6 ct scans since I've been on H & P but they're being done 3 monthly now (phew) Hope this helps.
LD x
madge1
Member

Re: Pertuzumab

Hi Fergal-jay,
I did have a ct scan and also an u/s scan just before my 3rd treatment, as the oncologist wanted a baseline for this treatment. They did show a good response to treatment, but then I had been on Capecitabine for 10cycles and had one lot of the docetaxol. Wanted to stay on the herceptin and pertuzumab as research has shown that they do have a good result/response and you are only funded once for it, so kept chemo he offered me for later. I was also started on exemestane (hormone tablet/aromatose inhibitor) for the ER pos.
Hope this helps !!!
Julie xx
fergal_jay
Member

Re: Pertuzumab

Hi madge so did you have a scan after your 3rd cycle of h&p?
madge1
Member

Re: Pertuzumab

Hi,
That's great news about H and P !!!! I've been on it for 4 cycles, first one with docetaxol and as I said I had a severe reaction to that and made the decision to stay just on the H and P as I had read that there had been really good results as a combination. Fingers crossed that we all remain on this treatment!!!! Wishing everyone well !!!
Love Julie xx
LemonDrizzle
Member

Re: Pertuzumab

Thanks for taking the time to post - this makes me feel so much better and gives me more hope.
LD x
elliedog
Member

Re: Pertuzumab

Hi. Not sure if this is of any help. I was dx double whammy (liver) Feb 2014. I did 6 rounds of chemo with the H and P which luckly gave me a clear scan. I have since continued with the H and P plus tamoxifen and continue to have clear scan however they have now said that they want to only scan me once a year now and monitor me through my bloods and how I feel. I had a recent check up and we discussed the latest research results published about H and P and the word among the oncs is they are quietly gob smacked with the results.My onc has said that this is another turning point in the mbc world and that the H and P together are amazing. I have read the research results and about 80% of the ladies from the initial trials are still clear or stable five years later on just the P and H. These types of results have never been seen before. I am now over 14 months on P and H and am back at work and feeling well. I am waiting for my appointment for reconstruction to my right breast which I never thought the onc would give the ok for as I am now mbc. However he said why shouldn't I have reconstruction because I'm going no where any time soon.(he alsohas ladies that have been on Herceptin alone for over 10 years now and doing well)I suppose what I am trying to say is have faith that the drugs can work because they are working for many people out there.Sorry I've gone on but if you need any more information don't hesitate to ask.x
fergal_jay
Member

Re: Pertuzumab

Hi all, I'd like to know that too lemon as mum has just been told they're gonna keep her on h and p without chemo and look at chemo if she needs it down the line! She's dissapointed but glad theyre keeping her on the pertuzumab as onc says there's bin some good results. This does mean tho that's she's had no chemo since diagnosis which is concerning us

Any experience of any of this please put our minds at rest or share your own experiences
LemonDrizzle
Member

Re: Pertuzumab

Julie, hope you don't mind me asking but how long have you been on h and p without chemo? I've been on just the 2 since June (plus Zometa for bones) and wondering how long they can be effective for. Thanks
LD x
fergal_jay
Member

Re: Pertuzumab

Hi all that's good to know about herceptin as she's worried that's what's causing this. She is back up hospital today after coming home last night as having palpitations again. I'm hoping she may just be stressing herself out worried about everything and that's whats causing it but they gave her no answers yesterday so that hasn't helped.
madge1
Member

Re: Pertuzumab

Hi everyone,
Fergal J, hope your mum is feeling better, and as the other girls have said Herceptin can cause long term heart problems and not usually acute ones.
Regarding the treatment, I was given all 3 treatments the same day '!!!!!!!! I did have a severe reaction to the docetaxol a few days later, now not on it for that reason, but remain on the herceptin and pertuzumab.
Wishing you all well !!!!
Julie x
nicky08
Community Champion

Re: Pertuzumab

Hi. I have also replied to your same question on the bone mets thread, and it's good to see LDs reply as it backs up my thoughts. It may be worth asking why all 3 were given the same day (although it doesn't change the outcome) as the protocol is to split the doses for the very reason of seeing which of the drugs causes a reaction if there is one.
Nicky x

LemonDrizzle
Member

Re: Pertuzumab

Hope your mum's starting to feel a bit better. My onc told me that Herceptin causes heart problems long term so I would think it's not that causing the fluttering. When I stopped the docetaxel (after only 3 cycles) I wasn't given antihistamines and had an allergic reaction to either the P or the H so went back on them immediately. Perhaps your mum is having some sort of reaction too or can the steroids she was taking cause this? Another thought, could it be because she was given all the large doses in one session - usually it is given over two days at first. Hope you get positive answers tomorrow and your mums treatment can continue without all the extra stress and worry.
LD x
belinda
Member

Re: Pertuzumab

Hi, I did answer on bone mets but just to add here I'm not her2+ but do know they can tweak the dose. Hope you get some answers quickly, to put your mind at rest, waiting and not knowing is so stressful. X
fergal_jay
Member

Re: Pertuzumab

Worried it may be herceptin playing up and after the reaction she had stopping her from having.the chemo I'm worried theyll stop herceptin too
fergal_jay
Member

Re: Pertuzumab

Knackered now belinda but chest xray and bloods come back fine hearts skipping a beat so will find out what that means for treatment on friday
belinda
Member

Re: Pertuzumab

Oh dear, hope this is nothing serious and your Mum is home soon. Take care, you must feel exhausted. X
fergal_jay
Member

Re: Pertuzumab

Well after Monday mum was fine yesterday and is now in hospital as had a flutter in her chest they've found her heart is skipping beats and she's now waiting for blood results. Panic stations yet again
fergal_jay
Member

Re: Pertuzumab

Thanks all that's just what I wanted to hear
LemonDrizzle
Member

Re: Pertuzumab

Fergal, don't stress too much about your mum not having the docetaxel. The Herceptin and pertuzumab are an affective combination so they will already be starting to work. When she sees her onc he'll have other ideas for chemo. Try and have a restful evening after the anxiety of today.
LD x
Chocolates
Member

Re: Pertuzumab

Hi Fergal-jay - what a day you've had. Really feel for you. Just thought I'd let you know a lady at my clinic who is 86 refused the docetaxol but went with the herceptin and perjeta only. Two years on her extensive bone and lung mets have disappeared and she is doing well. She's very eccentric and doesn't always turn up for her appts etc yet she's had remarkable results. I had the chemo with h & p and am now just on h&p only. One year on I'm ned and still going. So what I'm trying to say is that the h&p combination is excellent and is having good results on its own. Therefore there is time to explore other options. xxx
elliedog
Member

Re: Pertuzumab

Hi fergal jay. I wonder why they gave all 3 together for her first treatment, they usually give the chemo on a seperate day. However there are still chemo options open to your mum including chemo at a reduced amount but more often. In America I have read about ladies that never had the chemo and just received the H+ P with great results. I am still on the H+P (I finished the chemo 15 months ago).There are still many options available to your mum with this mixture which I am sure your onc will go through at your appointment. Big hugs x
fergal_jay
Member

Re: Pertuzumab

Hi all, well today didnt go well. Mum had the herceptin and pertuzumab without a problem but had a reaction to the Docetaxol so has not had any Chemo today. They are looking for an alternative but this is so scary knowing shes not getting any chemo at the moment. Surely this is not good!!! She has an oncologist appointment Friday anyway so they said theyll talk to her about options then. Im one very stressed and worried daughter right now, please someone say im over reacting!!

nicky08
Community Champion

Re: Pertuzumab

Hi fergal jay

Good luck with your Mum's treatment today, it is a very long day and she will be exhausted I'm sure.  Make sure she drinks a lot of water afterwards (and during) and rests as much as she needs.  I found the side effects came on after I finished taking the steroids so she may feel OK for a day or so and then it hits her.

It's best not to take any herbal supplements unless you have asked her oncologist first.  Although milk thistle is known for it's cleansing powers of the liver it can also interfere with absorption rate of any drugs.

I found the first cycle of this treatment the worst, all the others afterwards have been far more bearable.

Nicky x

fergal_jay
Member

Re: Pertuzumab

Well here we go, mums first treatment today 7 1/2 hours 😞

Also was going to ask if any of you have tried herbal items like milk thistle to help with SE
nicky08
Community Champion

Re: Pertuzumab

Hi
I had a wig from the lady who goes to our local hospital and have used it when I wanted to look 'normal' however I do hate wearing it, it looks fab but just isn't 'me' I agree with LD about wearing hats and I got quite a few jersey head coverings from the wig lady and wear those most of the time. The best hat I've got is a light grey fleecy one I had for skiing which is soooo comfortable and looks like I'm just wearing a beanie like everyone else in this cold weather. I also found a lovely dressy turban style head covering for a wedding I went to last weekend which I was complimented on.also I have a sleeping head cover, essential as you can get cold at night although once I'm tucked up and warm I usually take it off 🙂 There's lots of choice by the way, much more so when I had chemo 6 years ago so I'm sure you're Mum will find something she's happy with and more importantly comfortable wearing.
N x

fergal_jay
Member

Re: Pertuzumab

Thanks lemon x
LemonDrizzle
Member

Re: Pertuzumab

I found a wig that was virtually the same shade and style as my hair but it's never been out of the box! I managed all through summer with hats and scarves and then when the woolly hats came into shops I bought some of those. I preferred these to the others as I felt they everyone knew I was ill when I was wearing them, but woolly hats made me feel just like everyone else. There's lots of options for your mum, it's a case of finding what she's comfortable with. Even though it was summer, I was surprised how cold I always felt without hair so prepare your mum!
LD x
fergal_jay
Member

Re: Pertuzumab

Mum has an appointment at the hospital for wig as they try to match colours etc she's really hating the idea
LemonDrizzle
Member

Re: Pertuzumab

Fergal, unfortunately yes I did. I'd been stressing about it happening but when I started pulling chunks off after about 12 days after 1st chemo it wasn't half as bad as I expected. In the grand scheme of things I decided it was only an inconvenience and it made showering and getting ready so much quicker. Now I've just got enough regrowth to need to zap it dry with a hair dryer and although it only takes a minute it's driving me mad! Back in March I never thought I'd say that as it was worrying me as much as the chemo itself. I didn't bother with the cold cap because the nurses said I'd probably lose it anyway and I didn't want to prolong the time I had to be there for treatment. If your mum wants to try it there's nothing to lose.
LD x
fergal_jay
Member

Re: Pertuzumab

Does she have to ask for that nicki, mums more worried about her hair than her treatment
nicky08
Community Champion

Re: Pertuzumab

Yes! It started coming out before the second cycle so I had it cut really short. However you Mum could try the cold cap which can be successful if fitted correctly! But does add a lot of extra time onto the treatment time as it has to go on at least 30 mins before the chemo is given and stays on for as long afterwards, could be longer though as I can't remember.
Nicky x

fergal_jay
Member

Re: Pertuzumab

Did u all lose your hair with treatmrny
LemonDrizzle
Member

Re: Pertuzumab

Thanks Julie for replying. Snap - double whammy for me too back in March. I'm ER+ too so perhaps I'll have something like that in the future. See you at the Christmas Eve party!
LD x
madge1
Member

Re: Pertuzumab

Hi LD,
I did ask my oncologist if I would continue to still be funded for the pertuzumab now I'm on it and he said yes, which is a relief!!! The exemestane is an aromatose inhibitor and is in the same group of drugs like Letrozole. It is for the ER+ part of the tumour. I was diagnosed a year ago with double whammy, and it being ERpos HER2Neg and then in August I complained of more tenderness and swelling under my arm, they done a biopsy again and it came back as HER2pos so treatment changed. Hopefully I will continue on this treatment for a long time !!!! Next ct scan will be in 3-4 months.
Wishing you well LD and a Happy Christmas.
Love Julie x
LemonDrizzle
Member

Re: Pertuzumab

Julie, the dreaded docetaxel certainly didn't suit you - it amazes me how we all react in different ways. It's good to know we'll be funded for this while we're already on it but it annoys me that the drug fund is even being discussed - it's as if we don't really matter. My onc is like yours, more chemo is available later if and when needed. Hope you don't mind me asking, but what is exemestane for as hormone tablets haven't been mentioned to me.
Glad to see your treatment is going well, long may it continue to do so.
LD x
madge1
Member

Re: Pertuzumab

Hi ladies,
I will be on my 4th cycle of herceptin and pertuzumab on Monday, getting my bloods done and portacath flushed this afternoon!!! I did have one cycle of docetaxol but had a severe reaction with diarrhoea, spiked temps, severe joint pain, neutropenia and a 13 day stay in hospital and 2 visits by the community nurse !!!!! I have never felt so ill and really can't remember the first week in hospital!!!! Because of the severe reaction my oncologist did not want to give me any more docetaxol even a reduced dose as he said I'd have the same reaction. He gave me 2 options but I decided to stay on the herceptin and pertuzumab as he said I would not be funded again in the future. Staying on this means that I have the other chemo in line !!! He also put me on exemestane (hormone tablet) and I've had more side effects from that which I'm now coping with. I had a baseline ct scan which showed a couple more mets on spine but with sclerotic healing and no further new mets so a good response from the previous chemo Capecitabine. I don't have to see the oncologist for 3 months !! I did have a muga heart scan a week after my first cycle which was ok!!!
Nicky, sorry to hear about having another 2 cycles of docetaxol, but at least it is doing it's job!!! Long may it last ! Thank you for your support re: my portacath, it's a god send!!!
LD, good luck with your continued treatment.
Fergal_jay, wishing your mum all the best for her first chemo on Monday, I will be thinking of her when I have my treatment.
Love Julie xx

fergal_jay
Member

Re: Pertuzumab

I'm so glad you both commented it's good to be in touch with people who have experience with what mums going to start. Dreading and yet looking forward to Monday as really don't want to see mum suffering but I know she wants to do whatever she can to try to beat this as much as she can. She's now got a pain in her side which onc has said is from liver mens so she's struggling to lie down to sleep but apparently that should go when chemo starts Monday. Hope all results have been good with you guys, and nicki altho annoying to have another couple doses if it could shrink tumours like you said best to do it sooner. Hope your all well xx