Diagnosed with Grade 1 tumour. No lymph node involvement. Had lumpectomy followed by 18 sessions of radiotherapy and taking Arimidex for 5 years. Now been told the tumour was HER2 positive and have the option of Herceptin without chemotherapy. Will the benefit outweigh the side effects and the fact this treatment is once every 3 weeks for the next year. I had thought I was back on track and this has really unsettled me. Grateful for any advice. My mind is going round in circles.
Hi Patlilmay
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Lucy
Hi Patlilmay,
I have had 6 doses of Herceptin so far, alongside my chemo. My chemo is now finished and my next one will be on its own.
Her2 positive is an aggressive one Iām afraid, and as it has been offered, please think carefully before refusing. Herceptin is the wonder drug for HER2 positive tumours. Did your oncologist tell you what percentage benefit it would have? If not, I suggest you ask him. Whilst it works better along side a Taxane chemo drug such as Docetaxel, it also works without chemo, but did you ask why you arenāt to have any chemo with it?
The side effects from Herceptin are very slight, often none at all. It can be harsh on the heart, but you will be given heart scans at regular intervals and they will keep a good check on you throughout. I know it is a bind having to attend every 3 weeks for a year, but not that much of an inconvenience when you think of how it may be preventing any unwanted recurrences.
The first dose is the worst. Only because it is a loading dose so it takes an hour and can give you a headache/flu like symptoms. My oncologist said to take 2 Paracetamols an hour before infusion and continue as necessary for a day or two afterwards. Iāve done this and have had no bother at all. Subsequent doses only take half an hour and Paracetamol can also be taken beforehand. If you have a holiday or something planned that might interfer with your dose day, they will work round it. You can miss up to one week but any more than that you have to have another loading dose.
xxx
Hello Lola (Linda) - I am glad to know that the chemo has finished for you! 
Patlilmay - like Lola, I have recently finished chemotherapy and I am carrying on with Herceptin alone now - dose number 10 coming up. Now that the chemoās finished itās fairly easy going for Herceptin. I have mine every 3 weeks on the chemo bus - you can also ask about having it at home, instead of at a hospital. I donāt get any problems with it.
Even though you are grade 1 with no spread to lymph nodes (I was grade 3, I had node involvement) your oncologist thinks Herceptin on its own will benefit you because of the HER2+ status. As Lola says, HER2+ is aggressive in that it has a higher chance of recurrence/spread. There is always a tiny risk of cells being left behind after surgery/radiotherapy, and if cells are HER2+ then Herceptin acts to stop these fast-dividing cells coming back. You could check with your onc. if you were borderline(2+) or strongly positive(3+) for HER2 protein over-expression. Also, what percentage benefit youād have if you took Herceptin. I would say the benefits of Herceptin definitely outway any side effects.
Jen
Hi If you are boarderline +2 then a further test should be done called a FISH test which determines if the tumour is positive or not. I know there is a study not sure if its started or if they are still looking for patients to take part which will determine if those with HER 1+ and 2+ would benefit from herceptin. My HER2 result was 2+ I then had the FISH test which came back negative. I do have a little thought in the back of my mind after reading about the possibility that HER 1+ and 2+ might benefit from Herceptin but I am nearly 6 years from diagnosis and fine so not really that worried. I donāt think they give herceptin without chemo.
Best wishes Melxx
Go for the herceptin. For most people the side effects are minimal and it gives you a bit of peace of mind knowing you have something on your side to tackle your HER status.
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I would go for it. Yes HER2+ is an aggressive one because of over expression of protein but Herceptin works by binding to the protein on surface an stopping cells from dividing. I was scared when I was told mine was HER2+ but apparently thats better than a triple negative lump that sits there doing nothing and not reacting as well to the meds.
There is another similar drug called lapatanib ( or something like that) but not sure the situations that is suitable for
Only bind with herceptin is it is intravenous as it is nt a drug as such it is an antibody. The guy who invented it few years ago is confident there will be a cure for bc within 10 years!!!
I havent started mine yet but am grateful mine is her2+ in a weird way as I know herceptin will open up a can of whopp ass on it
I think lapatinib is only licensed for previously treated advanced or metastatic BC. Although triple negative BC doesnāt benefit from hormone therapy or Herceptin patients usually have a really very good response to chemo whereas ER+ and HER+ respond better to hormone therapy or Herceptin.
Melxx
Thanks everyone for your comments. I have an appointment with my oncologist tomorrow and a list of questions. It has really helped to get your views. Will let you know what I decide and how I get on.
Hi wanted to share my experience of the wonder drug tht is Herceptin. Iāve been on it for the past 2 years and due to secondaries will be on it forever. I am happy to report in my experience there are hardly any side effects associated with this drug (most of my problems are attributed to previous chemo and taking tamoxifen) I get a bit stuffed up and and nasal during the infusion this is eleviated with taking a sudafed tablet, my heart scans have all come back normal. Really hope this helps you. xx
I found out that my FISH test was positive. My consultant and specialist nurse both reassured me about side effects and benefits of herceptin outweighed my fears so I am going for it and start treatment on 6th August. Have had my heart checked and that is fine so I am feeling confident that all will be well. Thanks everyone and good luck to you all. X
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Hi Patlilmay - I have been told that Herceptin is not licensed in my area without having chemo as well. What postcode area are you in as want the Herceptin but not the chemo? Thanks and hope things are more settled for you now
Iām confused. I had a grade 3 tumour and am ER+ and HER2+ . The tumour was 12mm on the scan but measured twice the size when it was removed 4 weeks later. Ā My BCN told me that they donāt give herceptin without chemotherapy. Originally i was told i just needed radio therapy. Iām due to start having 6 lots of fec-t (once fully healed)and the herceptin is given on the 4th cycle. Iām concerned on how late into the chemo this is. I have had to have a second operation as there was no clear margin so this has delayed my treatment.Ā
Hi everyone, have never posted on a forum before but here goes!Have to make a decision on what adjuvent Ā therapy to have. Had a lumpectomy Ā about six weeks ago. the tumour measured 15mm was ER &PR positive and HER2+ no node involvement and a clear margin. I am otherwise fit and well. just turned 50 and classed as premenopausal although my periods seem to have stopped. Saw my oncologist and it was good news. He said that without any further treatment i had an 87 percent chance of surviving 10 years and beyondā¦ If i have the radiotherapy and start Tamoxifen (which i fully intend to do) this brings my percentage up by 4 to 91 percent. He Ā then said i had the option of adding another3 percent to my rate if i chose to go through 6 rounds of chemo {Taxotere and Carboplatin] plus Herceptin for a year. He said it was quite a small percentage for such a gruelling treatment but would not give me any advice on what to do . Has anyone else had to make similar decisions? Does Chemo have to be used with Herceptin ? He also suggested that if Ā i found the chemo really bad i could just do one round and i would then be enabled to start Herceptin. But worried if i did this whether it has same benefits Ā dont know how much of benefit is completing all chemo or having the Herceptin or if you need allof both? I am usually quite robust with my health so should be able to cope with chemo Ā but seems so daunting to have to fill myself with poisonous drugs and lose my hair[i know it sounds fickle but i feel that losing my hair will make me feel really low and awfull about the way i look] Ā Have read studies on use of Herceptin with another drug is it Taxol? which is less agressive but no long term studies. Am veering towards having everything as dont want to be left wondering if it will come back if i dont do absaloutely everything . Have to let my oncologist know my decision Ā by this Tuesday 20th October 2015. Anyone got any ideas. sorry for rambling on!
Hi all, so I saw my oncologist yesterday and I am healing nicely and he is happy to start chemo in a couple of weeks. I am to have 3 lots of FEC the start the T alongside herceptin. Not sure how many as he just said it would be for the next 12 months or so. He also mentioned I could have weekly treatment on the mobile unit that is closer to home but only if I am not using the cooling cap as they donāt do that on the mobile unit. Iām not sure if that would be both the herceptin and the T part that would be weekly or just the herceptin (so much info given and my brain didnāt process everything!!) Anyone else given the option of weekly cycles and is this more wearing on the body?
Iām kind of stearing away from the cooling cap as it would need to be on for an hour or so before the chemo starts and as Iām not great with cold as I get headaches even in cold weather. I also donāt think I could cope with gradual thinning over weeks.
I did ask about the hormone treatment and radiotherapy by he said we would discuss it at a later point.
How is everyone else getting on with their treatment plan? X
Hi gsk
Not too informed on this but can shed some input in relation to what my mum is going through and has been toldā¦
Mum diagnosed 1.5cm invasive grade 3 her2+. Lumpsectory on 15th nov, margins clear no nodes. Met with oncology today - herceptin cannot be offered without chemo. I am told all her2+ needs chemo, to keep the cancer from coming back and then inconjunction with the apparent wonder drug herceptin. I asked about why not just on its own and got told only progress made reg trials was the time reduced to one year - no trials (over here I assume) for it alone so I assume they are a few years off.
Mum has been offered Paclitaxel weekly for 12 weeks and then 3 weeks herceptin for a year, so they at some point J think add the herceptin in with the chemo. Not sure if mum should have the EC chemo - as itās geade 3 but based on the above the senior consultant said she was pretty sure taxol and herceptin would be enough ā¦with less side effects??? These are the experts and Iāve read online these two drugs arenāt given together (Paclitaxel and herceptin) I think itās because they give a smaller dose as hey are giving the herceptin but itās one case by case basis and they evaluate everything from size, nodes, type etc.
Mum has to have a heart scan )everyone has this wth chemo apparently and then start second week of jan. Keep thinking will every added week make a difference?? Consultant said no and said to remember main thing is the C is out and this is the āinsuranceā still hard though but they were helpful answering every question we had! And had a fewā¦
Seems silly for mum to go through Christmas with that if she can delay it a few weeks.
Hope everyone is ok. Just the second part of the journey this dreaded chemo, but positive attitude they say helps and we are trying to do that for mum xxxxx
****** typo on the below
Iāve seen and read that herceptin and palitaxel are given together!
Hi thereā¦I am trying to get herceptin without chemoā¦
Some of these posts appear to indicate it can be doneā¦
I live in Wales UK and would be grateful for any information.
Thank you
HER2+, oestrogen and progesterone positiveā¦1cm tumour.
By the way I went for an ultrasound and mammogram as I had a niggly pain in the side of my left breast. Both clear 12 months agoā¦he said I had very dense breast tissue for my age (63), more like that of a 40 year old.
He decided one more mammogram 12 months laterā¦(Dec 2017). I had the odd pain but not often. The mammogram showed changes to micro-calcifications. He did an ultrasound and there it wasā¦same place as the painā¦taller than it was wide, irregular and with a base shadow. Needle biopsy for tests but I knew the shape!!
My point is why do they say it is not painfulā¦I have no discernable lump but the pains/swollen feeling and this tumour are in an identical placeā¦
Hi BKK girl
I have the same aims as you it seemsā¦ I am trying to avoid chemoā¦herceptin only seems to have been licenced with chemo as it was tested on final stage Breast cancer patients receiving chemoā¦ it helped so thatās how it is licencedā¦but it appears to work as well for 9weeks as for 12monthsā¦
I canāt seem to find much data on its efficacy without chemoā¦
BUT we have been doing chemo for yearsā¦ and it doesnāt appear to do more than kill your cells and damage your immune systemā¦Yet recent research shows our immune systems are vital to fight cancerā¦hence the big money research into immune type treatmentsā¦
Heart scan is because of damage of herceptinā¦can be aggravated by type of chemoā¦