I was diagnosed with small areas of ER- HER2+ in June (mainly in DCIS). I had a wide local excision at the end of July. (I previously had DCIS in my other breast with a mastectomy and no further treatment)
I met with my consultant last week who said he was happy with how surgery had gone, I had clear margins and the sentinel node biopsy was clear.
The next stage is chemotherapy and herceptin. I was told by my bcn that oncology were running about at 60 days for an appointment however I then got a letter in the post giving me an appointment at the end of this month.
So I am trying to get my head around the whole chemo thing. I read threads on here about the different drugs given, cold caps, special diets, temperature taking, etc and everyone seems so knowledgeable. How much of this is self-taught or learned here and how much will I be told when I meet the oncologist?
Why don’t you join the September chemo monthly thread , hopefully someone a little bit further along will be able to help answer your questions ?
I’ve not had chemo myself but I would imagine people get their information in all
the ways you mention.
Hey @scientistamafier I’m sorry you find yourself on the chemo journey but I know you will get lots of support from this forum. I am mid-way through chemo at the moment.
You usually have a pre-chemo appointment with your breast care nurse/oncologist and they explain the likely side effects of your treatment and things to be aware of (i.e high temp) and you sign a consent form to agree to the treatment. They give you information to take away and will give you a telephone number to ring incase you have certain side effects.
Things I would suggest getting in place are: 1. a dentist check up (tell them you are starting chemo), its hard to have dental work done during treatment. 2. Order a good thermometer as you will be told to check your temperature regularly. 3. Do some batch cooking and freeze some tasty meals for when you are too tired to cook. 4. Let your friends and family know so they are ready to support you.
I was told by my oncologist not to do any special diets, but to just eat a normal, healthy diet with plenty of protein and vegetables.
Try to do a bit of exercise if you feel well enough, walking is perfect and it’s nice to get outside!
Cold capping is offered at most hospitals, it hasn’t worked for me (lost about 90% of my hair) but it does seem to work better for some people.
You learn things as you go along, and soon you will be an expert X I wish you all the best on your journey!
Hello
I’m sorry to hear of your diagnosis but glad the treatment is in full swing. I hope it all goes well for you.
I had two types of chemo for my BC.
Everyone responds differently to treatment but the nursing team are excellent and should answer any questions you have. None of which are ever silly!
Chemo can be horrible but is tolerable. More importantly for me it removed my tumours so was worthwhile.
Make sure you take something to keep you occupied as it can be boring. Take all the rest you need and time off work if you need it. Get all the help you can with practical things.
I found these things useful: a notebook and journal, water bottle, scarf (for warmth and comfort), boiled sweets, puzzle book, music and someone to drive you home if possible.
My oncology appointment is on 26th September so it will be right at the end of the month before I have my first session. I can’t decide whether to join the September thread or wait until the October thread is started.
I would like to add my advice to all the other useful tips given by others. I had chemotherapy and Herceptin injections 9 years ago and there are a few things I would add:
Make sure to drink plenty of water - I had awful constipation after the first round of chemo, which made a bad situation worse! I also took a salad with me to eat which helped too.
I tried the cold cap for about 30 seconds but couldn’t tolerate it. My hair did fall out after a while but it wasn’t as bad as I expected - I bought a pretty scarf/turban online and just ignored the odd stare when I went out.
I felt worst the day after the chemo so if you feel the same, stay in and be kind to yourself. Do whatever makes you feel more comfortable - comfy clothes I found best and keeping warm. I did have a horrible metallic taste in my mouth and boiled sweets were the only thing that got rid of this - sherbert were the best.
The Herceptin injections were done by nurses who came to my house, which was brilliant. The chemotherapy admin lady sorted out all my Herceptin appointments and was really helpful. No side-effects at all with these but they did carry on for a year.
The main thing to focus on is that it worked with me and I am now recovered - that’s the main thing to focus on with any treatment. Get through it and life will be better. Good luck.
Yesterday I met with my oncology consultant to discuss my treatment. I will be having Paclitaxel once a week for twelve weeks and Trastuzumab (herceptin) (I think every three weeks) for a year.
I am booked in for an echocardiogram next week and then should have a meeting with a chemo nurse (possibly via Teams).
I am finding the wait to start treatment frustrating. It feels like our lives are on hold as we don’t have a start date yet.
Hello, I did my yesterday - Paclitaxel and one of the immunotherapy treatments as oestrogen positive. What worked was to take a ginger extract 2 hours prior and not eating on the day before and during the chemo very much (just small snacks). I started eating at 3pm all fine. Cap cooling helped with any headaches I had from the steroid injection. Felt fine afterwards and if you can take some melatonin overnight. Helps. Good luck.
Hi @miriam3
Thanks for your post. I am yet to have surgery and chemotherapy will be next. Where did you get you melatonin from please and how does it help?
Thanks very much x
I’m sorry you find yourself on the chemo journey but I know you will get lots of support from this forum. I am mid-way through chemo at the moment.
X I wish you all the best on your journey!