Yes, our immune systems are suppressed just with the Herceptin, as (like the Perjeta) it is an antibody treatment. The suppression is obviously not nearly so marked as when on chemo, which is why we can go back to work, but with a novel virus such as COVID-19 we become at risk. If you have not already had a normal flu jab, you will probably be offered it as it is available free to people on cancer treatment. You have to check with your oncologist at what point in the cycle you should have it when you are on chemo. I was on a three-weekly cycle and had to have the jab at the end of the three weeks when my neutrophils were higher, but I’m not sure how it works if you are having weekly cycles (which I guess you are, if you are on Paclitaxel). It won’t help with COVID-19, of course, but it will at least provide some resistance to the common flu which is also circulating at the moment.
As for hair loss, I chose not to use the cold cap because the chance of retaining my hair (or at least some of it) was only 30% with the chemo regime I was on. I lost all my hair 12 days into the first cycle of EC, and it fell out in huge clumps over a weekend. The falling out was preceded by a prickling feeling, so I knew what was coming. I had already arranged to have a wig fitting and had got a wig which resembled my natural hair, so I just adapted to wearing that and it has been OK. My hair started growing again when I moved on to the Herceptin/Perjeta/Docetaxel regime, so you might in fact be fine - EC is much harsher on hair than the taxanes like Docetaxel or Paclitaxel (and Paclitaxel is gentler than Docetaxel). My hair is now about 3-4cm long and quite thick, but is coming back curly and initially emerged in a variety of colours on different parts of my head! Now it seems to be settling back to its natural brown colour, thankfully. Once it is a bit longer I will ditch the wig and get it cut into a proper style.
It’s good that you are managing well after the first treatment, and I hope that the next ones go well too. I think that side effects do increase slightly as the cycles go on (my oncologist said it is due to the cumulative effects of the drug building up in the body) but I found that they were still manageable. Strangely enough, the effects of the taxanes can emerge a long time after chemo - for example, my toenails began to fall off only a couple of weeks ago (but luckily there is always a nice new toenail growing underneath!)
All the best with your treatment, and take care.
Thanks for the reply Blackcat...I am encouraged by your report of minimal side effects...because my diagnosis is early, detected on mammogram, small tumour, no invasion to tissues and no lymph node involvement (minimal lymph channel involvement) I had partial mastectomy with 5 lymph nodes removed in January. 12 weeks Paclitaxel and Herceptin started last week , then 3 weeks of radiation. The oncology nurses said I should have no trouble going back to work with Herceptin. I have a supportive employer so far, although I didn’t realize there was a break for 3-4 weeks before radiation therapy, which my work wasn’t expecting, I am worried about that. My first treatment went well last week, just tired so far the day of..I’m assuming that will worsen. I too am concerned about being around people with this new virus! I am also in healthcare so would be more at risk...are our immune systems suppressed with just the Herceptin drug?
How did you do with hair loss?
Thank you again for your information on your experience so far, I appreciate it...best to you with your treatment.
I am currently on three-weekly Herceptin/Perjeta infusions, after having completed 6 cycles of chemo (2 x EC and 4 x Docetaxel/Herceptin/Perjeta) between August-December 2019, followed by surgery (mastectomy and axillary node clearance) in January 2020. I have also just completed 2 weeks of radiotherapy, with one more week to go. I returned to work full-time one month ago, and am having my Herceptin/Perjeta infusions last thing on a Friday so that I have time to recover over the weekend. I have found that the side effects are minimal compared to having these drugs alongside chemo. I have slight digestive problems (stomach discomfort and diarrhoea) on the evening after the treatment, accompanied by some blurry vision and some joint/muscle aches on the following day. Other than that I feel OK, and am fine to go back to work as normal on the Monday.
One problem that has recently arisen due to the escalation of the Coronavirus threat is that targeted therapies such as Herceptin/Perjeta do compromise your immune system, so I was told at my latest treatment last Thursday that this places me in a high risk group in relation to the virus. This means that my work has had to do an individual risk assessment for me, which has resulted in me being told to work from home rather than in the office or out in the community (I work in frontline health care). Up to last Thursday I had also been travelling to my radiotherapy appointments by train after work, but now I have been told by my treatment team to use the patient transport minibus (which takes much longer) instead to reduce the risk of coming into contact with crowds. I had really been enjoying getting back to a normal lifestyle over the past month, as I have been feeling well, so it is disappointing to have to adjust my working practices but I know that I have to take the advice of my team and that the current situation is exceptional.
I hope that your chemo goes well, and that in due course you will get back to work while on the Herceptin/Perjeta. It is certainly a powerful combination, as it completely dissolved my tumour - after the second cycle of Herceptin/Perjeta/Docetaxel, a breast MRI showed that only the titanium clip could be seen, with no evidence of the tumour, and this was confirmed by the histology report after surgery. The result was so good that I was told I did not need to have radiotherapy, but I chose to have it as a belt and braces approach.
All the best with your treatment - take care.
Hello al1and, I hope it goes well for you, just be gentle with yourself for a couple of days afterwards. I understand with some people that the symptoms increase slightly the more you have, in the way chemotherapy does but to nowhere the same extent. I think what has surprised me is how long it takes to get back to normal after treatment, I was shown my blood test results in hospital while they have been looking into my lungs, and the readout was predominantly in red, when I queried it they said it was highlighting the problems that still existed with my blood, anaemia being one of them, apparently this is perfectly normal. I think what I’m trying to say is listen to your body and give yourself plenty of time to get back to normal. I’ve found it really useful to speak to a couple of friends who have been through a similar experience, one of whom is a nurse who gives cancer patients Herceptin injections and she has made me realise how lucky we are to get this treatment and what fantastic results it gives. All the best to you x
Hi nessa46, Ok that sounds scary for you with the lung issue, I have early stage HER2 positive, not in lymph nodes but traces of cells in a lymph channel...I had partial mastectomy and removal of 6 lymph nodes...no invasion into tissue, blood tests and ECG all good and healthy...I'm just hoping I can go back to work and have minimal side effects, I work in health industry with patients...my employer is very supportive but there are 3 women filling in for my medical leave. I just hope to have minimal side effects, I know everyone is different..pretty nervous in general...the oncology dept at my local hospital says the have the referral and working on getting me in soon...thanks for your reply and supportive words! I have some good friends and a few family members helping me out emotionally...
it’s good to hear you’re getting on ok with your treatment. I finished radiotherapy on January 3rd and have been having Herceptin and Pertuzamab every three weeks. I haven’t suffered any side effects which would stop me returning to work, a little woozy, sickness and diarrhoea after one of the treatments, slightly achy joints and a little tiredness but I have treatment on a Friday and by Monday I’m fine. I haven’t returned to work as yet as I’m due to have more surgery late March and unfortunately I’m now having some problems with my lung which my oncologist believes are due to radiotherapy damage. I’m confident though that once these are sorted I’ll be able to return to work. Best wishes for your future treatment, let us know how you get on x
Hello, i am new to this forum...I had surgery Jan 22, was recommended this therapy, awaiting phone call for appt with local cancer clinic...was told last week by oncologist i should have no trouble going back to work after I do the 12 weeks Taxol and Herceptin combo, then radiation for 3 weeks...then as you know, 9 mos of Herceptin. How are you managing going back to work? I am very concerned about side effects but the oncologist I saw said that they are minimal and shouldn't be a big deal?
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.