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Herceptin without chemotherapy

84 REPLIES 84
rosietd
Member

Re: Herceptin without chemotherapy

There is no such thing as a standard treatment plan! It is a very personal decision for everyone. And I think there is a small degree of gut feel in it too, which only you can gauge. Whatever you decide to do, it will be right for you.

Best,

Rosie 

Simi7
Member

Re: Herceptin without chemotherapy

Thank you ggg. I guess there are different reasons for not doing chemo and just having herceptin. Everyone’s situation is so different is something I’m learning in this process! 

Simi7
Member

Re: Herceptin without chemotherapy

Received thank you Rosie 

ggg
Member

Re: Herceptin without chemotherapy

I had a mastectomy February 2020 4cm and 3 cm removed plus 2/8 nodes , due to previous burn injuries I was unable to have the recommended radiotherapy, due to my wound healing taking 7 months I missed the window of opportunity for chemotherapy and personally felt unable to tolerate the toxic tamoxifen.

after12 of 18. Herceptin decided to stop as I feared the potential damage to my heart.

i now rely on  natural methods diet, exercise, herbs, vitamins and attempt healthy diet, I also quit alcohol.

rosietd
Member

Re: Herceptin without chemotherapy

Hello there, I have just PM’d you.

The Royal a Marsden offer a second opinion service which you can access online. You have to pay for it of course! But I have used it twice and it has been hugely helpful in making decisions about treatment.

Rosie

Simi7
Member

Re: Herceptin without chemotherapy

Hi Rosie hope you are doing well. Can I please ask who the consultants were at the marsden? I have her2 positive invasive element to the DCIS and it’s approx 5 mm , 4 mm on final pathology and approx 2 mm on biopsy. My oncologist at the marsden do not recommend any further treatment as I have had a mastectomy. I am extremely worried about this and will get a second opinion . You can dm too if that’s better for you. Thank you 

Simi7
Member

Re: Herceptin without chemotherapy

Hi ggg

just saw your message and was wondering how you managed to get herceptin without chemo? I had DCIS and now a small invasive element too which is approx 5 mm it was 4 mm on final pathology but they also took out 1-2 mm on biopsy . It is her2 positive and hormone negative. My oncologist are not recommending any further treatment I had a mastectomy. I’m really worried about recurrence etc and I know people have had chemo for small her2 positive tumours. Any similar situations will be great to hear please.

ggg
Member

Re: Herceptin without chemotherapy

I have Herceptin without chemo, I think the Covid situation changed the normal protocol 

whitmic4
Member

Re: Herceptin without chemotherapy

Hi Heather,

The oncologist has left it with me. There isn’t any literature available to gauge against. He even called the USA. He said if I wanted to I could have 12 weeks of Paxciletol(same as you) then Herceptin. I’ve decided to go with it. I think 12 weeks now is a small price to pay for the little added insurance. 

shirleyemm
Member

Re: Herceptin without chemotherapy

Hi

I had Herceptin without Chemo as the oncologist said because of other health problems it would make me too ill and with me being 74 I managed to get 12 doses out of 18 my oncologist stopped it in February as it was affecting my heart, I was diagnosed with Grage 3 ER+ and HER2+ in March 2019 had lumpectomy and radiotherapy  then 3 weeks ago I found a swelling at the top end of my breast up into the chest I only had a mammogram in June but as I understand they don't screen that part of the breast so i'm back at Breast Clinic on Wednesday I know I cannot have Chemo or Herceptin any more so if its another tumour I dont know what they will do or give me.

I hope you manage to tolerate it without any heart problems

sending you a hug and good luck

Shirley 

xx

shirleypage72
Member

Re: Herceptin without chemotherapy

Hi there

i met with another oncologist as my first oncologist was unavailable for our appointment and she urged me to have chemo. She asked if I was a risk taker. I said I wasn’t with my life and so she said “Well there is your answer” 

I finish chemo on Monday, still have radiotherapy to go and herceptin every three weeks. 
My chemo was weekly paclitaxel and I have been really well throughout. I also scalp cooled which means fingers crossed I have kept my hair.
I wanted to have a belt and braces approach and look back and think I did everything I could to try to stop it coming back.

I hope this helps - PM me if you need anything else - I’m happy to chat.

Best of luck

Heather

whitmic4
Member

Re: Herceptin without chemotherapy

Hi Shirley,

can I ask what treatment plan you decided in the end? I had really small invasive element, 2.5mm removed with DCIS, nothing in my lymph nodes but unfortunately HER2+. I meet with oncology tomorrow and my understanding from the nurse is it’s my choice. I don’t want a choice, I want them to advise. I’m scared of making the wrong decision and regretting it. 

Preet
Member

Re: Herceptin without chemotherapy

Thank you. We pray that God heals us all. 

Louie604
Member

Re: Herceptin without chemotherapy

Good luck Preet. Take care x

Preet
Member

Re: Herceptin without chemotherapy

Hi 

I have been told I can't have chemo or radiation so I'm having herceptin with pertuznab. I might have letrozole. 

Preet 

Louie604
Member

Re: Herceptin without chemotherapy

Hi

i haven’t started yet as I have heart problems and I need more tests to see if I can tolerate it. Good luck with yours. 

Preet
Member

Re: Herceptin without chemotherapy

Hi louie

I'm goi g to be having herceptin and pertuznab with out chemo. 

Have you started yet? What has been your out ome so far?

Do you have a tumour?

Preet 

rosietd
Member

Re: Herceptin without chemotherapy

Hello there. I have just (two weeks ago) started Herceptin-only treatment for one year. My onco wanted me to have Paclitaxel + Herceptin, but I have a contraindication to Paclitaxel due to anther drug that I am on, for something unrelated. I had to really fight for Herceptin-only treatment - I ended up changing oncologist and getting two second opinions from the Royal Marsden - but I finally got it approved.
I have only had one treatment so far - and the side effects were much as I had been warned they would be - flu like symptoms, aches and pains, tiredness. 
The big risk is obviously to the heart so I will be having three monthly scans to keep an eye on that.

Hope that helps.

Rosie

Preet
Member

Re: Herceptin without chemotherapy

Hello 

I just read your story from 2013 and wanted to know how you are doing now? I have been told not to do chemo as well and take herceptin.

Please could you let us know how you are and how you found the treatment?

Preet 

rosietd
Member

Re: Herceptin without chemotherapy

Update - I will be starting one year of Kadcyla at the end of May. My (new) oncologist Has recommended it, but says that if I can not tolerate it, then I will have Herceptin only for the remaining part of the one year period. And he has even managed to persuade my medical insurance to pay for it. 

Whilst I am very relieved to have some treatment now planned - thanks to a more open minded oncologist - I am really nervous about starting treatment. Actually no, I am very scared.

 

The wonderful world of cancer huh?
Rosie

rosietd
Member

Re: Herceptin without chemotherapy

The PM system is not letting me send a message for some reason.
So I had surgery privately but my onc does work at Northampton GH. He told me to seek a second opinion from an onc at Oxford University Hospital (but I had already sought one from the Royal Marsden). 
I am HER2+, hence the need for aggressive treatment.

Rosie

Louie604
Member

Re: Herceptin without chemotherapy

Thanks

its interesting how you were given the 3% for HER 2 as I’ve been given over 10% benefit with chemo plus 9% with Herceptin. It’s odd how different areas of the country give conflicting information. I guess it depends on the extent of the BC and node involvement. 
Elaine 😊

shirleypage72
Member

Re: Herceptin without chemotherapy

I’m HER2+

Louie604
Member

Re: Herceptin without chemotherapy

Lol 😂 thanks 

rosietd
Member

Re: Herceptin without chemotherapy

Ok, I will try again. Bloomin’ IT!!
Rosie

Louie604
Member

Re: Herceptin without chemotherapy

Hi

Are you Her 2 or TNBC? 
Elaine 

rosietd
Member

Re: Herceptin without chemotherapy

I was wondering whether treatments were being initiated at the moment - gosh, what a choice to ask you to make. My reason for not having chemo is due to a severe contraindication between chemo and a drug I have been on for many years.

Sending best wishes,

Rosie

Louie604
Member

Re: Herceptin without chemotherapy

Hi Rosie

No it’s not come through. 
Elaine

shirleypage72
Member

Re: Herceptin without chemotherapy

Hi

i live in leeds and  was offered herceptin only last week, my oncologist is not keen for me to have chemo due to the covid situation. He did say there was no scientific evidence that the herceptin only route would be effective and therefore advised me not to have either treatment (chemo and herceptin). He said that the risk covid poses outweighs the 3% increase in survival rates that the treatment would give me in 10 years. He couldn’t give me the increased risk of recurrence without it, clearly there is one.

He had left the choice of weighing up the potential risks of treatment versus non treatment to me....

1 chemo and herceptin radiotherapy tamoxifen

2 herceptin radiotherapy tamoxifen 

3 radiotherapy tamoxifen 
Difficult choice! I have a week to decide.

rosietd
Member

Re: Herceptin without chemotherapy

Did my message reach you? I’m not sure if it sent.

Rosie 

rosietd
Member

Re: Herceptin without chemotherapy

I will PM you with more info.

Rosie

Louie604
Member

Re: Herceptin without chemotherapy

That’s interesting as I’m Northamptonshire too. I will look into that. Are you with Northampton or Kettering GH? I’ve seen both oncologists at NGH and neither of them will budge or even listen. 
Elaine

rosietd
Member

Re: Herceptin without chemotherapy

I am in Northamptonshire but I sought a second opinion from the Royal Marsden in London. They have a second opinion service which you can access online. They charge a fee of course! 
Rosie

shirleypage72
Member

Re: Herceptin without chemotherapy

Hello

i hope you are well. Do you mind Me asking how you got on with your treatment. What did you decide to go?

Louie604
Member

Re: Herceptin without chemotherapy

Thank you

Could you please let me know how you get on with a treatment plan. What area of the country are you in please? My oncologist won’t even listen to me about this. 
kind regards x

rosietd
Member

Re: Herceptin without chemotherapy

It is all still under discussion, but herceptin without chemo is now definitely on the table. I have had to fight for it and have had to request two second opinions. It shouldn’t be this hard!

I am hoping that I can get a treatment plan agreed over the next couple of weeks.

Sending best wishes,

Rosie

shirleypage72
Member

Re: Herceptin without chemotherapy

Hello

ive just found your post, I know you posted this a while ago. Just wondered what decision you made. I’m in a similar situation having to make the same decision, plus covid.

Thanks

 

rosietd
Member

Re: Herceptin without chemotherapy

I am coming to this post as I am having such frustrating times with my oncologist about this. He wants me to have weekly Paclitaxel + herceptin, but I have a severe contraindication for chemo due to anticonvulsant medication I am on. Specifically, NICE guidance is that Paclitaxel should not be mixed with the drug I am on. I have asked about herceptin-only treatment, I have dug out what research I can find, I have even offered to self-pay - but today my oncologist flat refused to do it and told me to go get a second opinion if I wanted to. I feel absolutely abandoned.

So if anyone HAS managed to crack this one, I would be really keen to know who / how.

Rest assured I totally understand that chemo + herceptin is the standard route, but doing this carries very big risks for me due to my current anticonvulsant medication. And coming off that medication carries equally big risk. What the heck am I supposed to do?

Rosie

Louie604
Member

Re: Herceptin without chemotherapy

Hi

i read your post and although old now I was wondering if you managed to get Herceptin without the chemo at all? 
I would be grateful to know as I am seeking the same. 
Thank you 

Pjsun
Member

Re: Herceptin without chemotherapy

Hi wavy locks,

i can agree about the wait for the injection.. I was 5 hours waiting today..

abby72
Member

Re: Herceptin without chemotherapy

Hello! I am new here! I am Swedish but living in Spain. 45 years old at diagnosis. I have got a weird one for you; I was diagnosed with BC "In Situ", 5 mm, ErPr+, Her2- (neg), grade 2, clear margins, no vascular invasion, no necrosis. Had surgery begining January 2018. Since the lump was palpable, during surgery (lumpectomy), they also took out a 3 lymph nodes, 1 had micrometastases, and 1 had ITC. The doctors where perplexed, where did these micrometastases come from? The pahologist searched and searched; finally they found a tiny Micro IDC, 0.18mm. It could, due to the small size, not be tested. I did not get chemo, but had 20 rounds of Radiation. I did change oncologist after that. My old oncologist was a very unsympathetic person, older, and seemed kind of tired of his job. Anyway, fast forward, my new Oncologist, head of largest BC clinics in Spain (Madrid and Barcelona), working in many EU countries and the US (researching), said it was too late for chemo, but decided that I needed Herceptin. Yes, you read right; Herceptin! I argued that my In Situ was Her2 Negative, but he said he "didn't care" about the In Situ lump. But that if a 0.18 mm tumor can send metastases to lymph nodes, it is a very very agressive one; therefore a big chance of being Her2 Positive. He did say that he agreed, they do not know, and that they are "fumbling in the dark" with me. But that he thinks that the side effects of taking Herceptin, outweight the risk of this 0.18 mm tumor being Her2 Positive. I get Herceptin in injections. So far no side effect whatsoever. They said he injection would hurt a lot, but it didn't hurt at all. Doing heart screens and blood tests. We will see how it goes. I am in a very "grey area", and it doesn't feel good at all. But anyway, I am getting Herceptin every 3 weeks for 1 year, without chemo...

blueash
Community Champion

Re: Herceptin without chemotherapy

Hello Adele,

 

I had my surgery first BUT mine was tiny 3mm or as big as a peppercorn. If your tumour is large compared to your breast then many surgeons want you to get the chemo first because then you might have less invasive surgery. Sometimes the chemo makes the cancer melt away completely and and other times it shrinks it to a great extent. 

AdeleS
Member

Re: Herceptin without chemotherapy

Yorkie hi

Chemo+Her prior to or after Mastectomy

I have had similar indentical diagnosis

ER+ 4 PR 0 HER2+ 3+

Invasive Grade 3 , DCIS Grade 3 not exercised yet, but the WLE didnt deliver clear margins and as the DCIS was not 16mm as advised but  32mm  will be requiring further surgery but after treatment

The plan always has been to have Chemo + Herceptain and it's taking ages already 30 days  and yet to be n by an Oncologist such a challenge to get appointment so unlikely will get chemo within 50 days. Am at a Central London Hospital

My Question to you and anyone else is did you have your Chemo+Herceptain prior to Mastectomy or after

Thanks

 

Rebecca14
Member

Re: Herceptin without chemotherapy

Really sorry to hear this Shona and wish you best of luck with your treatment going forward!

I am on my last herceptin and have followed your exact path - altthough I had a mascteomy and reconstruction. It's only last week I realised that i could get a reocurrance in my reconstruction so will need to be really vigilant

Shonagh
Member

Re: Herceptin without chemotherapy

I don't want to be the voice of pessimism here but I should point out that Herceptin doesn't always guarantee a successful treatment. I've had chemo and 18 herceptin injections for my Her2 positive tumour. My tumour was completely destroyed by the chemo and I had a lumpectomy. The histology confirmed there were no tumour cells left in the tissue and my lymph nodes were all clear. The week before my last Herceptin injection, I was very suspicious that all was not well and I have just been told that the cancer has returned. It has not responded at all to Herceptin. To say I was devastated is an understatement but I also didn't realise there was the possibility that the tumour cells wouldn't respond to Herceptin. I don't recollect that ever being mentioned so I guess I just assumed it always worked. So I'm now back on this roller coaster journey. I really wanted a mastectomy first time round but because my reponse to chemo had been so good, the surgeon talked me out of it. Hindsight is a great thing but sometimes you need to really go with your gut instinct.

Honey
Member

Re: Herceptin without chemotherapy

Yes, agreed. CaN i ask where you went and your oncologist. I cant return to my local as treatment was appaulling. I would very much like to have E/C alongside herceptin but told thats not possible at my hospital....are you in london?
Honey
Member

Re: Herceptin without chemotherapy

It’s a very though time and so sorry to hear, but feel certain the Dr has made the right choice for your mum...
Can i ask what hospital your mum is. I def would llike to have e/c with herceptin as do not want full dose chemo. I need to find an oncologist that might help m get what i would like.
Honey
Member

Re: Herceptin without chemotherapy

Herceptin without Chemo

I’ve read a couple of posts where people have had Electrochemotherapy with herceptin. My cancer is on the chest wall, and i asked about this but was told I could not have E/C 

Can someone tell me at which hospital, consultant where someone has managed to get electro chemotherapy alongside herceptin. The treatment at my local hospital has been terrible with very arrogant oncologist who wont even follow me up now. I have to see someone else I know, but so desperately want to find someone sympathetic to my wishes and beliefs

I do not want full dose chemo which is the only thing being offered to be me at the moment

 

Yorkie
Member

Re: Herceptin without chemotherapy

I was also grateful of 18 doses of Herceptin and had no heart problems. I had my last dose 5 weeks ago.
Yorkie
Member

Re: Herceptin without chemotherapy

Please try and remember that the doctors dont give you chemotherapy for the fun of it, it costs the NHS thousands.  The aim is to keep you alive.  If they suggest it then go for it.  Chemo is not pleasant for any one but it can be done.  Side effects vary greatly between people.  I had a bad time with it but am still pleased i had it as it has given me a better chance of life.  Be grateful it has been offered.  18 doses of Herceptin is not a walk in the park either, you might as well get the whole lot over with, give yourself the best chance possible and get on with life.