Thanks for the advice blueash, interesting about the vitamin D, I’m sure I will be low after the last few months. Hopefully I’ll know more after seeing my oncologist tomorrow about where I’m going and then can prepare. Thanks again.
If you get diarrhea and/or sickness you might want to try fasting for 48 hours before your treatment. Lots of us fasted for chemo to lessen the side effects and this is why:
Have a look at the two mice at about 38 seconds in. There is a long thread about it on here (do a search if you are interested). The ideal fast is 48 hours before, the day of and then eat the day after your treatment. If you cannot manage then the fast before is the most important.
Also make sure your vitamin D levels are adequate.
if you’re still here I’m so sorry if anything that’s been said has upset you, it certainly wasn’t my intention. The reason I originally asked the question was that I was given information on Herceptin and Pertuzamab by the hospital and the list of side effects are identical to those of chemotherapy. The thought of suffering these for the next 10 to 12 months certainly doesn’t fill me with pleasure, to the point that I don’t know if I could tolerate them. As I said I haven’t started them yet so have no idea how I’ll react. I really do hope that things improve for you and that your recovery goes well in the future, Vanessa.
Well that’s me told! Yes, it’s been a wonderful development, yes, most people sail through with minimal side effects - needing only the odd dose of Claritin, yes, I should just shut up and count my blessings.
I’m not looking for sympathy just pointing out that unfortunately a small minority of us have a very different experience of this drug combination. We realise how ‘lucky’ we are to have the opportunity to take it but it certainly doesn’t make it any easier living with the daily repercussions. But hey, at least I’m still alive to suffer those complications ...so I’ll now take my leave from this forum as I don’t need to be preached to any longer.
Yes I feel the same!
There is also a book which I have read
If you read the comments/reviews at the bottom of the page you really do begin to count your blessings.
Hi blueash, thanks for the advice, I’ll bear it in mind once I get started. I watched Living Proof yesterday, I was surprised how emotional it made me, I know that I’ve chosen not to acknowledge how poorly I’ve been but I think it brought it home to me. It also made me realise how very lucky we are that we have Herceptin, prior to it’s development we wouldn’t have had such a fighting chance so any side effects are a small price to to pay. Thanks again.
About the side effects - take Claritin hay fever tablets. They help with the runny nose and the aches and pains , I gave a link about them somewhere near the beginning.
Also watch a film called Living Proof it is all about how they brought Herceptin to the market.
this is the real doctor behind it all:
I’m sorry to hear that you’re still struggling, I wonder if it’s the combination of Herceptin and Pertuzamab rather than Herceptin in its own which makes the difference? I still haven’t started yet, had surgery on 9th October but have been fighting infections since then, though now improving and due to see my oncologist on Monday so I’ll hopefully get some more information from him. The results so far following chemotherapy have been fantastic and I’m sure that’s down to these 2 drugs so whatever comes next is hopefully a small price to pay. All the best for your continuing recovery.
Well unfortunately the side effects I have experienced have been far from ‘minuscule’ and have progressively worsened. I have found the last 11 months on H&P debilitating ...but that’s just me. Here’s hoping my body ‘sorts itself out’ like it’s supposed to once my treatment ends!
About the side effects of Herceptin, I think what the doctors mean is that the side effects when compared to chemo are minuscule. They are when you think that a few aches or a runny nose with Herceptin is NOT life threatening. Strong chemo can leave you with permanent damage to your nerves and blood or bone marrow which is why they are always looking at your blood to see if you can have it.
Even if the Herceptin impacts your heart (which is why you have echos) it sorts itself out if they stop giving it to you. So basically the side effects are "statistically insignificant" that does not mean that they do not exist. It is a term used by scientifically minded people to evaluate figures.
Hi Brogan, thanks for your post. I understand your confusion over the side effects, this was the reason for my original post. I was told by an oncologist that there would be no side effects, the nurses who administer the chemo said to ignore him as they are blasé about the treatment, the information I was given on Pertuzumab and Herceptin lists side effects which are identical to chemo drugs and responses from people who are undergoing the treatment vary greatly. I’m sorry you’re struggling, hopefully this will settle down. You’ve already come such a long way with the chemotherapy and surgery, I really hope that it gets easier for you, maybe having the treatment so soon after surgery means that you were still a little below par. I’m having surgery next week, on the 9th, I’ve been told I can’t start treatment until after post surgery review so I’ll have to see how it goes. Thanks again for your response and I wish you well with future treatment, Vanessa.
This is my first time posting I was diagnoised with HER2 positive breast cancer in January started 4 cycles of Herceptin pertuzemab and doxetaxal and then 2 cycles of FEC should have had a 3rd but decided to have an allergic reaction to the 6th cycle. I had mastectomy and reconstruction on 2nd September and awaiting radiotherapy. I started my targeted therapy 7days ago and the last 2 days I have felt rotten with headaches , diarrhoea, metallic taste and now a sore throat. I am hoping to avoid hospital but when I called they advice to take same precautions as chemo checking temp and taking paracetamol. I wasn't warned you could become neutropenic again with this therapy was anyone else?? I was told I would feel a little tired but no side effects like chemo and I feel very similar and worried now about returning to work as I work as a nurse . I dont know anyone in my area who's on this new targeted therapy and not sure if this is normal or not?
thanks again for your reply. That’s really interesting, I was due for my first cycle of Herceptin and Pertuzamab 2 weeks ago, the appointment was made, bloods taken, then when I arrived at the appointment I was told there was a new indication for the drugs which meant I couldn’t start them until after my post surgery review, I do hope this isn’t for financial reasons. I’m pleased to hear that you weren’t too affected by them. I know what you mean about having side effects just thinking about it, I do when I see the appointment written on the calendar! I hope the next cycle goes well on the 24th, thanks again.
The day before my surgery i had one session of Herceptin and Pertuzumab (H + P) on its own, didn't really notice any side effects but i suppose they were mixed in with the surgery side effects. I haven't read about the side effects i am just going to wait and see, sometimes i can have side effects just thinking about them! My next dose is 24th Sept.
I think they just carry on with the two targeted drugs after your chemo, i didn't have a break for surgery, although it may be different for everyone. Let me know how you get on with everything.
thanks for your reply, I’m pleased to hear you’ve had surgery and are progressing well. I haven’t had surgery yet, I have a provisional date of October 9th, saw the surgeon on Monday, slightly confused by all the options but have some time to think. Then it’s radiotherapy followed by the year of Herceptin and Pertuzamab. It’s good to hear from someone is having identical treatment, I’m really struggling to find anyone locally who is! I too have a runny nose, and I find the streaming eyes a real nuisance, I don’t want people to think I’m crying! I haven’t noticed my hair growing back yet, but I’m sure it will. I think we’re fortunate to be receiving this ongoing treatment, I understand it’s really successful, it would be lovely to hear how you are once you begin the regime. The list of side effects for Herceptin and Pertuzamab are very similar to chemotherapy but I’m hoping they are nowhere near as severe. Thanks again for your reply and best wishes for your continued recovery, Vanessa x
I am on a very similar treatment to you, 3x EC, 4x Docetaxel, Herceptin and Pertuzamab. Surgery , radiotherapy then carry on with Herceptin and Pertuzumab for a year every 3 weeks. I have just had surgery on the 4th so waiting to go for my results on the 20th.
The side effects i have had so far are runny eyes and nose but i can't really pin point anything else. My hair looks to be growing back but slowly.
Have you already had surgery and finished your radiotherapy?
I am still off work but hope to return soon, i am going to ask my consultant on Friday when i see him. I suppose it all depends on my results.
Hi Slowski, that’s good to know, about returning to work and hair growing back. I’m typing while sniffing away but I also have streaming eyes which are making it difficult to drive and read at times, my oncologist said it wasn’t a typical side effect but after hearing from you maybe it is🤷♀️ I’m hoping they settle down as I look as if I’m crying all the time!
Thanks so much for your reply and best wishes, Vanessa
I only had Herceptin, 18, after chemo. I returned to work ok and my hair grew back quite rapidly. My main side effect was an ever runny nose, such that I never went anywhere without a tissue! Although this was very persistent and long-lasting, it wasn't at all debilitating - as long as I had a tissue to hand.
Hope that helps.
Hi Blueash, thank you for your reply. That’s good to know, I seem to get different answers from different doctors so it’s giid to hear from someone who’s had the treatment. Best wishes and thanks again.
You do get blood tests but just not every 3 weeks as you do on chemo. I think they do it around the time of your heart scan. Mine was always OK on the Herceptin but I had to stop the chemp early due to low blood count of something.
thanks so so much for your reply, it’s really useful to know. I asked the nurses while having chemo today and they said, as you say, everyone reacts in a different way. They said consultants tend to be very blasé about it, but they find lots of people struggle, like you with diarrhoea and tiredness. The consultant also said I wouldn’t need regular blood tests as they don’t affect your immune system on their own, but the nurses today said they do and I would continue with the blood tests! All very confusing, but like you say it’s a case of see how it goes. At least I’ll have had a few cycles while I have surgery and radiotherapy so I’ll know how I feel before I make a decision about returning to work. Excellent news about the hair! Don’t want to be at work looking like this 👩🏻🦲😂! Thanks again for your reply and best wishes for the rest of your treatment.
I also had 8 chemo and Herceptin and Pertuzamab- have just had infusion number 10 ..so 8 to go.
My main issues have been chronic diarrhoea, heart palpitations and tiredness.
The diarrhoea started after the very first infusion of H&P so if you haven’t suffered this then maybe you’ll be lucky 🤞 - I just feel really drained and have lost over a stone since chemo finished. I couldn’t imagine returning to work whilst I’m receiving the infusions.
I’ve also been experiencing heart palpitations - my last echo showed some irregular heartbeats so I’m now waiting to get fitted with a 24 hour Holter monitor to get that assessed.
Generally, I feel tired a lot of the time and sometimes just have to sit down for a rest.
Apart from that though I’m fine😉!!
It’s a matter of seeing what side effects you get lumbered with really and soldiering on as best you can. Despite everything I still feel a whole lot better than I did during chemo.
My hair has grown back too - had my first trim last week 😁
All the best with the rest of your treatment x
I only had Herceptin by injection but I can answer some of your questions. Your hair is not affected but you may suffer with aches and pains and if so take claritin hayfever tablets. Here's why:
You will be there longer with the IV obviously. Also I gained weight due to water retention but it comes off when the treatment is over.
Hi, this is my first time posting and I apologise if this has been asked before. I was diagnosed with HER2 positive breast cancer in January I had 4 cycles of FEC followed by 4 of Docetaxel, Herceptin and Pertuzamab, the last being next Monday. This is to be followed by surgery and radiotherapy. I’m then due to receive another 14 doses of Herceptin and Pertuzamab by infusion, one every 3 weeks. I’m wondering if anyone who has received these targeted therapies in this combination can let me know how it was? I have looked up the side effects for them both and they don’t appear dissimilar to those of the chemotherapy drugs, but my oncologist suggests there will be no problems. I am keen to get back to work so would love to hear from anyone who has done this whilst on Herceptin and Pertuzamab, and also will the combination prevent my hair growing back?! Many thanks.