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Herceptin without chemotherapy

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Re: Herceptin without chemotherapy

Hi gsk

Not too informed on this but can shed some input in relation to what my mum is going through and has been told...

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 it's geade 3 but based on the above the senior consultant said she was pretty sure taxol and herceptin would be enough ...with less side effects??? These are the experts and I've read online these two drugs aren't given together (Paclitaxel and herceptin) I think it's because they give a smaller dose as hey are giving the herceptin but it's 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 "insurance" still hard though but they were helpful answering every question we had! And had a few...

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
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Re: Herceptin without chemotherapy

Hi, I was dx with IDC, Her2+, 1.5 cm in left breast and had a lumpectomy.  I am curious to know if you did have Herceptin only rx and how the therapy affected you? 

Hope you are doing well!

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Re: Herceptin without chemotherapy

Hi Jig,

I've been looking for anyone who received Herceptin w/o chemotherapy. There is also some research showing 9 weeks of Herceptin has the same results as 1 year, decreasing the negative impact.

Can you please share more? Where are you located? 

Thank you so much. 

 

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Re: Herceptin without chemotherapy

I was diagnosed with her2+  Brest cancer I January 2013.  I had a bilateral mastectomy.  I didn't have cancer in my lymph nodes  in July of that year after a lot of discussion and study, I choice herceptin alone gore one year.  I had treatments every 3 weeks.  I had a great oncologist who spent a lot of time with me going through my option.  As of today, I'm doing great.  Every person is different and medicine is definitely not an exact science.  Trust your gut, get other opinions and, as my doctor told me, stay off of the internet.  It will drive you nuts!

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Re: Herceptin without chemotherapy

Hi everyone, I was diagnosed in January, lumpectomy March.  I am ER+ and PR+.  Interesting about HER2.  My biopsy was HER2-.  My tumor tested borderline for HER2 (2.1) and my doctor had it retested and it came out 2.4 or positive.  This made me so anxious because I thought my treatement would change.  My oncologist was set on Herceptin alone for six months.  I started reading about Herceptin and as everyone here writes, it is given with chemotherapy.  I decided to go for a second opinion at UCLA and was told that I needed chemotherapy with Herceptin.  By the way, there are usually websites from the drug companies for the drugs we take and you can look them up on the internet and they usually provide a contact telephone number.  Genentech is the maker of Herceptin and I called them and spoke with a pharmacist who told me that Herceptin alone is "off label."  I went back to my original oncologist as a courtesy to him to tell him the result of my second opinion.  He actually spent an hour with me.  He told me that when they were originally researching Herceptin as the treatment for HER2+ tumors, they gave it alone and that Dr. Slamon's patients lived very long after treatment.  In addition,the oncologist at UCLA told me that cancer cells are not all the same and some can test positive and some negative (more confusion for patients!)  I have decided to have my tumor retested at a different lab and am now waiting for the results.  I am a believer in "tried and true" if available.  My second opinion oncologist is study driven and depends on statistics and data.  Makes sense to me because these studies go through years of testing (usually three phases of study) and then come up with treatments.  Why not benefit from this information.  I also am afraid of chemotherapy but I am more afraid of the cancer coming back in my liver or my brain.  So, if my tumor tests positive again for HER2, I will have chemo, knowing that I've done my best to overcome this.  I owe it to myself and my children.  Wishing everyone the best, 

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Re: Herceptin without chemotherapy

Hello I was diagnosed in November 2014  I am her2 positive so consequently had chemotherapy/ radiotherapy/herceptin which I finished in December my oncologist would not give herceptin without chemotherapy I have not heard of anyone who has been able to have herceptin alone there are some ladies who have been on herception for a long time but if I'm not mistaken these ladies have been diagnosed with secondaries but again I am not sure sorry I can't give you any more info take care love Judi

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Re: Herceptin without chemotherapy

Hiya. I dont have Herceptin as I dont have the right sort of cancer ( her + ) but a lady I used to work with insisted on just Herceptin for her lung mets. I think she had to fight hard just to get it without the pre chemo and it worked for 2 years on its own. I think she then had to have the chemo to give herself a boost .

I can understand your worries as chemo is quite a harsh treatment to undertake but your Oncologist will have a good knowledge of your situation and offer the right treatment plan. 

I remember reading a book by Jane Plant and she followed the Chinese approach to avoiding dairy and a lot of Western foods . It was very interesting and you might like to try to source it online.

 

Sorry hope you get a lot more replies that will be more helpful 

 

Carolyn x

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Re: Herceptin without chemotherapy

Hi, I am Chinese, now living in South Florida, US, and was just diagnosed last December with HER2+ 1.5 cm in left breast. Had very successful lumpectomy. But now am very frightened of chemo. All my life, have always used strictly Chinese herbal medicine, and have reacted terribly to the little bit of Western medicine I've taken so far. Here, I'm having a tough time finding an oncologist who will agree to give me Herceptin only. But from this forum, I get the impression that in the UK oncologists are more willing to prescribe it. True? If chemo adds only 3 o 4 perentage points, is it really worth the toxic damage to the body? I have a feeling I could reduce my risk a lot more than that just with extremely healthy lifestyle changes and without all the side effects. Any thoughts?

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Re: Herceptin without chemotherapy

Hi Bobbie,

So much info to take in when you are in a state of shock... FEC-T is usually a total of 6 sessions long, given three weekly. Herceptin is given three weekly either through a drip or with an injection and the gold standard currently is a year long treatment plan (18 lots). I'm not sure what he meant by weekly but it would be to do with your chemo. Herceptin is Definately given on a three week basis so if the 'T' part of your treatment is weekly for some reason, your Herceptin will still be every three weeks. The T part uses a chemo agent Doxetaxel. They don't give Herceptin for the first three chemo session (FEC) because that chemo contains substances that are not compatible. 

 

Hope this helps

 

ps: once I'd finished chemo I went onto three weekly Herceptin injections (given in the thigh) miles quicker -only takes 5mins (not counting the waiting time before being called into the treatment room!!)

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Re: Herceptin without chemotherapy

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 don't do that on the mobile unit. I'm 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 didn't process everything!!) Anyone else given the option of weekly cycles and is this more wearing on the body?
I'm 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 I'm not great with cold as I get headaches even in cold weather. I also don't 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
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Re: Herceptin without chemotherapy

Hi getitsorted tried to send you a private message but didn't work I literally am exactly the same as you are but nearly a year ago now since diagnosis and surgery  I fully expected radiotherapy only as no node involvement and clear margins but then bang you are her2 positive so everything suddenly changed of course I could have said no chemo but knowing my nature I would always have thought what if  so after a long chat with the oncologist and my lovely breast care nurse I opted for the chemo originally I was going to have four sessions but on the second dose I developed neutropenia where my white cell count was low so they decided to stop I was just unlucky the majority of ladies have been ok and been able to continue even with a reduced dose  but I continued with the wonder drug as I call it  herception which I have been absolutely fine with I'm currently on number 13 with no adverse effects I have regular heart scans which are fine as herceptin can affect the heart I can't believe I'm at the end of the tunnel it's been a long one but am getting there I also had three weeks of radiotherapy which went without a hitch it's a tough decision for you but this is a marvellous forum and I have met and talked to some wonderful ladies hope this helps you keep strong you will get there love Judi x

 

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Re: Herceptin without chemotherapy

Hi everyone, have never posted on a forum before but here goes!Have to make a decision on what adjuvent  therapy to have. Had a lumpectomy  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 beyond.. 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  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  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  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  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]  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  by this Tuesday 20th October 2015. Anyone got any ideas. sorry for rambling on!

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Re: Herceptin without chemotherapy

Hi mine was slightly larger than yours and I was er positive and her2 positive but no lymph node involvement I had chemo and am currently on my 13th herceptin and no problems at all I had to have chemo to be able to have herceptin. but it could be different  for you it's a difficult decision for you but I knew because I was her2positive I needed the herceptin I can't believe how quick the treatment has gone I finish in January my fourth heart scan is due next week and up to now all been fine love Judi

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Re: Herceptin without chemotherapy

I recently had surgery and am now facing treatment decisions.  No lymph node involvement; Triple positive but HER2 positive as well. tumor size .7 cent.  Oncologist recommends herceptin and chemo. says that if the tumor was .5 cent or less and the HER2 was negative, she would not suggest chemo.  I really do not want chemo and wondering about herceptin as a stand alone  treatment.  Any one with similar experience?

 

thanks...

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Re: Herceptin without chemotherapy

Hi Bobbie. Herceptin is given with the T part of FEC-T chemo, which is the last 3 sessions. It's not given with the FEC part due to both FEC and Herceptin having possible affects on the heart. I have had 10 of 18 Herceptin treatments so far and haven't had any real issues with it. Hope you are doing ok xx

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Re: Herceptin without chemotherapy

I'm 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.  My BCN told me that they don't give herceptin without chemotherapy. Originally i was told i just needed radio therapy. I'm due to start having 6 lots of fec-t (once fully healed)and the herceptin is given on the 4th cycle. I'm 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. 

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Re: Herceptin without chemotherapy

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
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Re: Herceptin without chemotherapy

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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Re: Herceptin without chemotherapy

Hi wanted to share my experience of the wonder drug tht is Herceptin. I've 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
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Re: Herceptin without chemotherapy

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.
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Re: Herceptin without chemotherapy

I think lapatinib is only licensed for previously treated advanced or metastatic BC. Although triple negative BC doesn't 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

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Re: Herceptin without chemotherapy

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
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Re: Herceptin without chemotherapy

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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Re: Herceptin without chemotherapy

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 don't think they give herceptin without chemo.
Best wishes Melxx

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Re: Herceptin without chemotherapy

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 chemo's finished it's 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 don't 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 you'd have if you took Herceptin. I would say the benefits of Herceptin definitely outway any side effects.
Jen
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Re: Herceptin without chemotherapy

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 I'm 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 aren't 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. I've 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
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Re: Herceptin without chemotherapy

Hi Patlilmay

Whilst you await replies from your fellow users please feel free to call our helpline to talk through your concerns, lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000

We also have an 'Ask the Nurse' email service and you can read more about this here:

http://www2.breastcancercare.org.uk/breast-cancer-services/ask-nurse

Take care

Lucy

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Herceptin without chemotherapy

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.