New preventative treatment offered for breast cancer

Hi , don’t think I’ve seen you here before so a warm welcome if you’re new and apologies for bad memory if you’re not! Can’t help re your particular treatment as I had a different brand of beast but will tag Northerner as she was also HER2 positive and also  for the same reason- hope I’ve got that right! 
I’m sure others will soon pop in with advice and information. Sending a big virtual hug to you in the meantime, HFxx

Hi   welcome glad you found us if you click on my name you will be able to read my story if you want .

Firstly take a breath I know it's a rollercoaster and when things are changed it must be worst .

All our plans are different because we are . We react differently and the cancers are different or we have other underlying problems that change plan i.e. My plan was changed because I had IBD which would have been affected by docetaxal. Your age is also in the mix when the team discuss and do plans .

My treatment after diagnosis 55mm calcification was masectomy within 8 days then on results told cancer clear but grade 3 HER2+ so requiring chemo x6 then herceptin x18 and then Bisphosonate six monthly for three year .

The chemo I had was EC x 6 more normally it's x3 then another maybe docetaxel or pax all depends on number of factors I think .

Any way  you have had  FEC which is the same EC I had for the first 4 I found it manageable with minor SE ...so nausea ,fatigue for 4/5 days possible mouth ulcers/ oral thrush. Dry eyes all of which I got meds for . Mostly by day 10/15 I was back up to 10000 steps a day and off to caravan for a week before next cycle . After no 4 SE lasted longer in cycle because of cumulative effects of EC onco offered to change me to weekly for 12 weeks of Pax . I chose to continue with EC so Se no different but lasted longer got quite dehydrated So skin peeling on finger an big toe nails gave up after chemo finished . But it was all doable last one was delayed for a week so I could recover before last one . So I wasnt too tired over Christmas .

one of the reasons for being off was first  Bisphosonate was given with no 5 EC double whammy !!  ( would have refused if I'd known ) 

I started herceptin three weeks after last chemo so staying on same cycle Se were very minor tiredness not fatigue bit achy for a few days .Also feel the cold a lot more ? 

Bisphosonate infusion are ok just feel a bit fluey for first week .

Im 18 month down the line since diagnosis and apart from needing to get fit ( covid partly to blame for lack of exercise ) I'm still here glad I've had belts and braces treatment to hold back any recurrence . 

I suppose im trying to say Chemo is not as bad as your imagination says it is some people sail thru it but if you are feeling rough I just think chemo doing its job and kicking cancers butt !

One thing more the I'll shut up You say you were ill on FEC-T a lot of people are . Some people asked and had the F part removed and coped much better . I would discuss with you team the SE you had last time and put meds in place to help . Then be an absolute pest demanding help if you not well . They don't want you to suffer and will support you . .

All of the above is my reaction to chemo etc remember you could be different . Hopefully you'll hear from others .nip on to the Jan chemo thread in the grey area at top quite a few HER2+ just starting chemo .

take care cone back with questions if you want 

Hi

Thank you so much for your message and welcoming me to the group plus tagging me to those with the same cancer as me.

Big vitrtual hug to you too xx

Hi Margaret

Thank you so much for your reply and telling me your experiences..you sound a strong positive lady. 

I suffer with IBS so think that's why I struggled with the FEC-T particularly badly..especially sessions 4-6.

I have another phone appointment with the oncologist before I start so hopefully he can reassure me that it's not as bad as the previous chemo. I also had to have injections for 5-7 days after each session which also came with yet more side effects so I'm hoping I wont need them this time but will see what the chemo nurses say in the pre treatment chat.

Anyway thanks again for all your help.

Hi make sure they take your IBS into account  by the sounds of it you could have been getting very strong cumulative Se as well like  I said I was fine up til 4> 6. Just remember they there to make sure you can cope 

stay well 

Hi, I have just started chemo for HER2 positive, last Friday and like you I was terrified by the possible side effects. I am being given Docetaxel and Carboplatin for chemo proper and Trastuzumab and Pertuzumab as antibodies. I will have 6 cycles of chemo with antibodies, 1 every 3 weeks and then only the antibodies for up to a year.

I prepared myself really well for the chemo. I felt being terrified was too negative and I managed to see the treatment as a blessing. I meditate and I ended up looking forward to starting the treatment. On the day, while every drug was going through my body, I just relaxed into my breathing and even fell asleep at times.

The side effects have been very minor and very short-term: slight acid reflux, hot and itchy face. Worse problem is not sleeping at night. I have a home made remedy for acid reflux. I use one TSP each of umeboshi plum paste, one of arrowroot or kuzu a one of agar agar flakes (macrobiotic product). Mixed with water and bring to the boil 2or 3 minutes and drink when cool. I drink this before food and it works wonder. I also think it helps me to not be constipated from taking anti-nausea tablets.

I also started to take Mistletoe before starting chemo. It is a natural remedy which is used on the continent as complementary treatment and helps alleviate the effects of chemo and radiotherapy.

So far I have had good energy, I walked yesterday for 3 hours and 1.5 h today. It is early days I know but I think having a positive attitude is paramount. 

Take good care xx

Hi , I was wondering where do you get your mistletoe from. Heard a few reports about it. Not started chemo yet but going in tomorrow for mastectomy and lymph node removal. Good luck everyone. We’ve got this! Xx

@Selinab Hi, It is prescribed to me by Dr Geider from the Camphill Wellbeing Trust in Scotland. It is a Charity. You need to contact them on admin@cwt.scot 

You can also check their website. Once you contact them, they will send you patient forms and detailed information about mistletoe. You will be in touch with a Doctor who will prescribe mistletoe and how to inject it, etc. They will also send you a list of other prescribers in England and NHS places where you can have it for free depending on where you live. I inject myself 3 times per week and it costs me about £130 per month. The dosage is increased progressively. You need to buy the seringes and needles separately. I just bought 100 for £19.online. 

I am planning to take mistletoe alongside my conventional treatment and thereafter, for a few years.

When you have a consultation online or by telephone, you receive a service summary which tells you the cost of the service but it is not an invoice. You are welcome to donate accordingly to your means as the charity relies on donations to continue to function for the greatest number of people.

Wishing you good luck for tomorrow. I had a mastectomy with immediate reconstruction and lymph removal on the 11th November. Take good care xx

Thanks for that will look into it. Not looking forward to tomorrow but just be glad to get treatment started. Unfortunately I can’t have reconstruction because of covid so will have to have at a later date. They have just started to do surgery again as had stopped so grateful to be able to have this done. Take care. Xx