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Herceptin without chemo?

18 REPLIES 18
Ali49
Member

Re: Herceptin without chemo?

Thanks Jay that is fantastic news. I starty PTH on wednesday and am feeling positive! I have coped ok with Fec. How were you with the docetaxol, herceptin and permuzetab? I am having 4 of them xc
Jay68
Community Champion

Re: Herceptin without chemo?

Hi Ali49, I believe that if they stop the chemo for any reason - as long as you've had Herceptin by IV they can continue to give you Herceptin by injection but you would not be able to continue with the Pertuzumab - thankfully I did manage 3 lots of EC and 4 lots of Doxetaxol with H and P and I'm pleased to say that when I received my pathology report following mx and lymph node clearance - all traces of cancer were gone - so all the unpleasantness of chemo was worthwhile in my case.

 

Good luck and hope your treatment goes as equally well for you. 

Ali49
Member

Re: Herceptin without chemo?

Thanks Bluessh x
blueash
Community Champion

Re: Herceptin without chemo?

Sorry Ali I have only just seen this!

 

My chemo ended early due to my blood counts going too low to safely continue and because of the Herceptin I was not required to wait longer or have a reduced dose. So you will have to wait and see how your immune system behaves.

Ali49
Member

Re: Herceptin without chemo?

That is a very good way of explaining it blueash. Thank you. I am to have 7 chemo. 3 FEC and 4 dotaxedol with herceptin and permuzetab. So could it be possible to have less chemo? I have grade 2 and her2 and er+ and will have masectomy after treatment x
Jill1998
Community Champion

Re: Herceptin without chemo?

You are a mine of information Blueash !!!
Jill1998
Community Champion

Re: Herceptin without chemo?

👍
Jobey68
Member

Re: Herceptin without chemo?

That's a great explanation blueash, I kind of understood it in my own head but could never word it to make any sense! This is so helpful Xx

Jill1998
Community Champion

Re: Herceptin without chemo?

Thanks that's very helpful should help people understand a bit better how it all works .
blueash
Community Champion

Re: Herceptin without chemo?

It is because the chemo was discovered first and was always used for aggressive cancers, then they developed Herceptin which targets the HER2 protein which is what makes this cancer grow so fast. So the Herceptin was to aid the chemo not replace it. It would be irresponsible of them to not give chemo to an aggresive cancer  and because as yet it is not licensed by itself they are not allowed to "experiment" on people without extensive trials which would take years.

 

 So  you either have chemo and Herceptin or you decline - BUT you don't always need 100% of the chemo because my blood went too low to safely continue and I had 4 out of the intended 6. When he reviewed my case the Consultant said he could lower the dose, wait longer between or stop at 4 and continue with Herceptin and bring the rads forward because I had had sufficient by then. So that's what happened.

 

They are currently doing trials to see if you can have less Herceptin and still be safe because in some countries you only get 3 injections but here we get 18 (1 every 3 weeks same as chemo). They are doing a trial currently looking at giving only 9 in this country details here:

http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-comparing-6-months-and-12...

Jill1998
Community Champion

Re: Herceptin without chemo?

Blueash why is that? People ask this question a lot on the forum and I don't know how to explain it .
blueash
Community Champion

Re: Herceptin without chemo?

They cannot give Herceptin without chemo - it is against all the medical guidelines.

Iyla
Member

Re: Herceptin without chemo?

Hi anita  Im also in the same boat,  er2+  3 estrogen postive , nodes clear,tumer 1cm

did you decide to take herseptin without chimo?

anitaboo
Member

Re: Herceptin without chemo?

Hi Jules, I have just found your thread... and being in the same boat as you were 2 years ago, I am wondering what happened re the perception without chemo etc? I have had my first cycle of chemo and not handled it at all well, and I know i don't really need it but being HER2+ I need the perception. How did you go on? I do hope you are now well and free of it all. Anita
jules_66
Member

Re: Herceptin without chemo?

Thank you all for your replies, I'm really grateful and will put the things you've highlighted to the oncologist on Thursday. Will let you know what the outcome is. Jules xx

Tussie
Member

Re: Herceptin without chemo?

Hi Jules!
I had a grade 3 invasive ductal carcinoma and DCIS close to the margin, node negative, ER negative and HER2 positive. After 2 WLE the surgeon did not think any more surgery was necessary, the oncologist said that my five year survival benefit with chemotherapy and Herceptin would be 6-7%. I was under the impression that the chemo would mop up any stray cancer cells and the Herceptin would make the chemotherapy work better as well as blocking and destroying the HER2 growth.
I am now undergoing chemotherapy, TCx4, it's not a nice experience but I, together with all others in the same boat will get through it somehow.
After chemo I am not sure what will happen as my tumor was not visible on any scan inc MRI. I have very dense breast tissue and not sure how to proceed as yearly mammograms is not going to reassure me of anything. Another discussion with the oncologist in the near future...
Take care and good luck x


somerset
Member

Re: Herceptin without chemo?

Hi Jules

I was in similar position. Mx showed HER2 positive invasive cells but the SNB was clear. Surgeon thought no more treatment needed but oncologist disagreed - he did not like the way it was behaving (found largely by accident as did not show up on mammograms/u/s etc). He did say it would be reasonable not to have more treatment and could be overtreatment but he recommended chemo, herceptin and radiotherapy to reduce risk of recurrence. Like you I was told I had to have chemo to get herceptin - but 'only' 4 cycles (ie minimum amount). At the time I believe trials were going on to look at herceptin without chemo but I don't think the results are out yet. As far as I can see Nice guidance has not changed anyway. 

 

I decided to take the onc's advice - he was keen on herceptin for me so I found it relatively easy to decide to put up with the chemo to get it - especially as he told me it is possible for cells to bypass the nodes and chemo should help to mop these up. I had more trouble deciding on the radiotherapy because although he recommended it onc was less bothered about this and benefits less clear cut. In the end I did do radiotherapy as well. Possibly the most helpful thing he said to me when we were discussing options was how would I feel if it came back as a distant metastasis in a couple of years and I had chosen not to do the chemo/herceptin etc - would I still feel that I had made the right decision and it was just one of those things or would I regret it and wish that I had gone for all the treatment options?  I thought hard about this and decided I fell into the latter category so I went for the lot. Just keeping all my fingers crossed that it has worked!

 

I did also consider the possibility of long term side effects from chemo/radiotherapy but I decided that these were only longer term possibles whereas the HER 2 positive cells were a current fact and it is a more aggressive form of bc. 

 

I hope you have a helpful discussion with the oncologist. It is tricky being in this position and I was grateful the onc took the time to talk it all through with me. Best wishes with making a decision.

Donnaandfamily
Member

Re: Herceptin without chemo?

Hi Jules

I know of several ladies on here who had the same predicament. Their consultants got round it by them having one dose of chemo - and no more...but this then permitted them to have the herceptin. Maybe discuss this with your consultant?

All the best and I hope all goes well...it seems a long journey but it flies past

Donna

jules_66
Member

Herceptin without chemo?

I wondered if any of you lovely ladies have been offered Herceptin without having to have chemo.  I was diagnosed mid March with Grade 3 IDC and underwent a mastectomy on 1st April.  I am both HR and HER2 positive so will be given Herceptin and Tamoxifen.  The SNR all came back clear but by chance 2 lymph nodes were removed, one showed to be clear but the surrounding tissue showed early cancer cells and the other one is having further tests (although the Consultant is hopeful this will also be negative).  He told me that because I would benefit from herceptin I would need chemo too as for primary diagnosis it would only be funded if chemo was given too and that I may end up being over treated just to get the Herceptin.  I do have to discuss this with the Oncologist this week but I wondered if anyone else had found themself in this position or indeed had been given Herceptin without chemo.  As much as I don't want chemo I will have it if it's thoguht to be benefical however I am struggling to think i have to have it when I really don't need it. There is a chance radiotheraphy will be given too later on but this is yet to be decided (apparanetly I'm not a black and white case - par for the course with me!!) Any help would be really appreciated. Thanks Jules xx