Chemotherapy for HER2 positive cancer

1. Hi Shanty, its a confusing scary time. My MX was the 12th Nov and was also told I would not need any further treatment as they said my scans showed my lymphs were clear. Setinel node and one further had tumors. So everything changed as well, Chemo and Radio. I will start chemo after having node clearance. You do read about side effects but then there are many people who have very little problems. A friend exercised through out her treatment and just had a few days of feeling tired. They also have improved Chemo so much to suit each individual. I am trying to help myself by eating well and exercising. My BCN said the fitter you are to start with helps lots. My cancer was HER negative. Hopefully someone whos positive and has been through treatment will offer advice. When does your chemo start? Let me know how you get on. We can do this. Hugs Anna 

Hi , we have met on another thread! Have remembered that Northerner had HER2 positive treatment so am tagging her as she will have advice and experiences to share. Love and hugs, HFxx

Thank you very much Anna for your reply. It is so encouraging to read your reply. I am trying to be as fit as possible before the treatment. It will start on the 8th January. I am doing long walks in the forest nearby and I am eating well too although no animal products at all except fish and seafood and nothing with sugar except fruit and mostly berries. I am interested in researching the relationship between food and cancer. Nobody knows for sure where cancer comes from and there seems to be so many factors involved and also so many types of cancer. In my case, I have a suspicion that it has been caused by grief over losing my son and only child 4 years ago but who knows? I had started to feel really much better after 4 years, had found a much more suitable new job, new motivations in life and then this.

I will let you know how I am getting on.

Hugs to you too. Shanty

Hi sorry I missed your post this morning ..If you click on my name you can read my story since diagnosis in June 2019 . Had masectomy then results came back aggressive grade 3 Her2+ . 

Took the news quite calmly cos that is what I do ..I need to digest then ask questions . Was very annoyed at BCN ( not mine ) who said she was worried about me cos I wasn't upset enough ???

initially more upset that chemo now coming .

So my plan was chemo EC x6 then Herceptin x18 plus an bisphosonate infusion every six months for  three years .

Everyone's plan can be different everything is taken into account cancer type ,your age, pre or post menapausal also is there any underlying health issues that can affect treatment . My plan at first had EC x3 then Docetaxel x3 but I have IBD so no Docetaxel.

unsure what you know or want to know about Her2 + but it is not as bad a diagnosis as it once was. One lady on here had been treated 13 year ago she no longer on here very often as she is busy getting on with life !

Her2+ was explained to me as a protein type that could attach to any rogue cell causing it to grow rapidly hence belts and braces treatment after cancer clear message post masectomy .

I finished Herceptin yesterday so after sixteen month can get of the three weekly cycle only the infusions every six months . 

Feel free to ask any questions you like and I will try to answer them 

Thank you very much HappyFeet1. I am already feeling more positive xx

Hello Margaret,

Thank you so much for your response. I am glad for you that you finished Herceptin. It must have been such a long journey, a journey that I am now contemplating. You sound very positive about it all and that is what I want to become: positive. And I must say that being able to communicate on the forums with you and others is already helping me enormously. Last night, I could not sleep and thanks to your reply, I had the courage to go online and find out more about the treatment for HER2 positive and I now understand why it is so heavy, considering it is aggressive and the risks of recurrence are high if not treated the way it is.

My treatment will consist of 6 cycles of Docetaxel (chemotherapy) with Pertuzumab and Trastuzumab (targeted therapy drugs), 1 cycle every 3 weeks and then I will receive only the targeted therapy drugs every 3 weeks for up to a year. I am not sure what Herceptin is in relation to those drugs. Is it another name for one of them? I understand that I might also need radiotherapy in the armpit but that would come after the chemotherapy has finished.

I have read about the side-effects of all the drugs and that terrified me. I would like to know what kind of side effects you suffered from if any and how you coped with them. Did they affect your every day to day life and for how long? Were you able to work or go on holiday?

Have you heard about Iscador? It is made of Mistletoe and is a complementary treatment for cancer much used on the continent and less used in GB although available. I have started to take it to alleviate the side-effects of the conventional drugs. I must say that I considered only taking Iscador but this was not recommended to me so I am taking it as complementary. My oncologist has confirmed that I can take it and that it does not interfere with the drugs which I will be having. My son had cancer while living in France many years ago and Iscador was part of his conventional treatment. He hardly had any side-effects. There has been a trial with Iscador and breast cancer treatment done by the Bristol University Hospital.

The more I know about breast cancer, the more I want to know but as you say, one step at a time is crucial, otherwise it becomes overwhelming.

Thank you very much for taking the time to write to me and I wish you all the best.

Big hug and xx Shanty

Sorry  I missed your reply ...when you are replying to someone if you use @ before their name no space a list of names will appear click on one you want in my case northerner it then highlights it and they get notification . Doesn't really explain this anywhere but it does work .

Anyway glad you feeling a bit better in view of your sanity please try not to use google for answers ,it can send you round the twist and is mostly out of date . I only ever used it to get questions for Onco or BCN therefore getting up to date relevant to me info . They got used to me getting phone out with list of questions starting with ..I understand that .......is this correct in my case .

My nodes were clear do no radio for me 

With regards chemo SE I can't say which ones you may or maybe not get because I was on EC x6 so different also we all react differently . If you go to the chemo Jan thread there is a group of ladies who have just started out on chemo last month and some may be on Docetaxel . I did not get Docetaxel because it can cause stomach problems and I already have them thank you !

With Ec I was given a list of possible Se when signing consent forms my Onco also gave me what read like a medical paper on it lol

Yes you need to know what they might be but rest assured you shouldn't get them all and certainly not all at once that's greedy .

Inwas lucky and felt what I got was not nice but minimal /manageable yet others were feeling rough . With EC Nausea is quite bad and I think usual with most chemo  but meds are given and if you still feel nauseous ask your unit to change them  . You shouldn't be that ill you vomit if you do ring the unit they will prescribe something .

i checked my temp daily to make sure no infection requiring attention . I never had an infection . If you keep a daily diary you will see a pattern emerge e.g. My pattern was nausea /fatigue 3/5 days fatigue/tiredness 5/10 days then feeling more "normal " we used to plan 10/14 days in Cumbria at our caravan coming back ready for next cycle .( still took overnight bag in case of high temp infection) only visited Penrith hospital once with sore throat had bloods done passed fit and went back to caravan .

From about day three I would make effort to walk gradually building steps back up to about 10000 by end of cycle and go for local days out away from people ( practice for Covid ) 

EC is classed as a harsh chemo can lose hair within days I was stubborn hair stayed for around eight weeks before starting to shed .So by Dec2019 was bald and wore hats or wig . Had it shaved then to give shape . Went into shielding in March bald and needed haircut in July when I came out lol now gets cut every four weeks growing do fast and thick.

Read the chemo tips page for hints on what to prepare for the niggly SE . E.g. For me . Oral thrush ,dry eye,  brittle nails .

Too old for work so can't answer that one but still active in home and garden throughout with help for  heavy work .

Trastuzumab is Herceptin 

I had ( like that HAD ) 18 three weekly finished last Tuesday SE for me was minor nausea and tiredness not fatigue . Whilst on herceptin have had regular heart echo to make sure healthy  last one next month . If you do get a problem with heart it is reversible So treatment would stop whilst heart recovered ..I never felt this was a big problem as the drug had a more important job to do . 

Enough of my waffle for now have a look at chemo thread . 

Speak soon 

Northerner

Hello Margaret, 

I hope I did this correctly and that you will see my response. Thank you so much for all the info you are giving me. It is really helpful: checking temperature every day, keeping a diary, etc...

I really don't know how to find the chemo thread. I have been looking everywhere. Please can you tell me where it is?

My employer has been so supportive but now that I have received the NHS letter recommending me to shield, I think I will be furloughed until April. ( I work as a carer in a care home). That is when the chemotherapy will stop but then I will continue with the targeted therapy drugs and I guess I will continue to be at risk unless I can be vaccinated against Covid-19.

I have an allotment and I look after honey bees. I also love walking and cycling and meditating. I have been using my "sick" time to learn Italian and playing the recorder and learning to play the guitar. So I will take the furlough as a blessing, allowing me to have the time to do what I love.

Happy New Year to you too xx

I’m on phone at minute as out doing daily exercise but grey at minute lol here is the link for chemo thread

community.macmillan.org.uk/.../january-breast-cancer-chemo

NorthernerThanks a lot Margaret.  Your list of things to have handy is really useful. What part of the North is this? I live in East Sussex and I love the sea, no matter the weather. It is always different x