Triple Positive HER2+
Hi everyone BCNA Online Network established a Group with Triple Positive breast cancer which is useful also for people who might be HER2+ but not positive for oestrogen or progesterone. This post i...
Forum Discussion
Hiya I’ve been diagnosed Feb with this triple cancer - positive.
not good with the names yet.
Im feeling lost totally adrift from the world I was in before February.
Start 1st chemo tomorrow morning , 3 weeks of chemo and I week of another for the HER2
Finally received link few mins ago to BCNA I’ve been told I’ll have a nurse back in Feb, went to appt to meet nurse - no one showed up left after few hours Breast Cancer Clinic waiting room Totally in the wilderness, can you point me in the right direction if this is not the group for Oestrogen + Progesterone + and HER2 in Lobe
Thank you very much for taking time.
I have tried to include a link to the Triple Positive Group in my first reply to your message but unfortunately I keep hitting a blocker lollyshopgirl
This link should take you to a list of all the Groups, just scroll down until you see the Triple Positive Group. There’s also a Lobular Group.
Category: Groups | BCNA Online Network
Thank you, I've joined the group and 2 others that seem applicable. Need to find how I work thru this BC I feel like someone shot me out of a rocket and I'm floating cold and icy through outer space....out there I know people are speaking... I can barely hear and no longer recognise the language.... nothing looks right anymore .
Smiles from meAmazing image! Take carelollyshopgirl
I am sorry to hear about your diagnosis and yes, it’s absolutely ok to discuss being diagnosed with Triple Positive here.
Suki mentioned that there’s a private Triple Positive Group join by clicking through the link and requesting to be added.
Good wishes for tomorrow’s first treatment my experience was that the nurses provide quite a bit of information at this first treatment. I had my doses intravenously and at the first treatment the nurses discussed getting a “port” inserted for the duration of my treatment. I don’t know if it’s been mentioned but it was something that made things easier because I am always told my veins are hard to find.
I think the treatments affect each of us so differently so it’s worth keeping an open mind about it because you might have minimal side effects. I found I could always ask the nurse on the ward where I went for my treatments if I was uncertain about a side effect but also, you can always ask a question through this network about tips or suggestions. For example I found using Biotene helped with some of the side effects (a dry mouth) and having soups and crackers if I wasn’t feeling like a big meal.I echo Suki’s suggestion- even if you can manage 20-30 minutes walk or 3 x 10 minutes walk during the days after chemo I found being mobile and active useful. Eventually I discovered the oncology exercise rehabilitation program that was being offered by my hospital- a game changer for the good me.
Might I ask whereabouts you are located; there might be some of our members in the same area and they might know of other resources local to you?
Will be thinking of you tomorrowHiya there.
Thank you for your lovely reply. Things changed within hours of me posting. Date of 1st Her2+ and chemo starts today now. l
It's early am and I can't sleep or keep still. After having orientation to treatment instead of actual treatment and 1 hour plus of side effects
I'm a bit of a mess.
There is good news, I've been transferred to the smaller and nicer hospital in Lilydale Vic and will maintain the one Oncologist through entire treatment - hooray! Maroondah was overwhelming and a blood test takes up to 2hours waiting.
Lilydale's Oncology nurses do your blood tests etc Great news.
All a few mins from home.
I found lumb 1st Feb. diagnosed 7th Feb. Had many biopsies and then markers implanted. Then heaps of other things ie PET scan, MRI, loads of scans on other organs finishing up last week with a colonoscopy. PET showed flares in a few places, all had to be excluded. Except one biopsy couldn't be done, near top tier lymph... All negative. Exhausting
Treatment 1st thing this morning. Wish I could sleep instead of trembling.
First time I've been anxious - the whole lead up is like many body slams - was ready for Tuesday. Now I'm undone.
Sorry to go on. I've never said so much about myself. Not even my friends know yet.
I'm single mum with four adult sons. They've been wonderful - wow- who knew they were made of solid gold. For that I'm am truly humbled.
Big smiles and regards
TERRIFIC that it is so close to your home now xx Have you met up with your Breast Care Nurse yet? I hope so.
If you feel crook at any time of your first treatment, make sure you let the nurses know (most don't, but hubby had a slight reaction to the first dose.) xx. The staff are always so lovely & helpful ... If you feel cold, they may have warm blankets for you (the treatment rooms are kept at quite a cool temperature). Make sure you take a warm jacket with you too, for when you go home - as the temps are dropping now as we approach Winter. A soft warm beanie for your head, and even soft gloves too - hubby lived in his beanie, even at home! 🙂
Taking puzzle books, or an iPad (good for netflix, Wordle and other online stuff!) is often better than books as following the story line can be tricky, let alone remembering having read it.
You may feel very tired a few days after - just put yourself to bed & get up when you feel like it xx. Keep water & nibbles (even nuts/chips or whatever you like) handy, so you don't have to get up to get something .... and when you ARE up - eat small portions, more often, rather than a big sit down meal. Just eat whatever you feel like, when you feel like it! 😉. NOTHING is off limits (unless it makes you feel ill!!) Your taste buds may change a bit too .. Keep a bowl handy!
Further into the treatment, keep an eye on your hands & feet for possible flaking skin - let the Nurses know if that happens. xx. It doesn't happen to everyone .... luckily! Hubby's treatment dose was reduced a couple of times.
Terrific that your boys are being so supportive of you xx.Keep your water up, specially after your treatments, to help 'flush it out' of your system xx
Take care and all the best for your treatment today xx
Sorry to hear of your diagnosis and that you didn't get to meet with a BC nurse. Definitely follow up on the BC nurse, as they are very helpful. Mine could visit while I was having chemo, so maybe ask if that is possible?
We have a private Triple Positive Group - you can select to join through "Groups" at the top menu. But otherwise, there are awesome people who can provide you with their experience in this thread.
Chemo is daunting, but you do what you have to do. I completed six rounds of TCHP chemo for triple positive cancer, one session every three weeks. Make sure you tell your oncologist and the hospital about any side effects.
Be kind to yourself. Eat whatever works for you and drink lots of water. Take books, puzzles or whatever you like to do, as the first session of chemo takes quite a while (they go slowly to watch for any reaction).
Try to do some form of exercise (even just walking) over the time you are completing chemo, as it is known to provide both mental and physical benefits.
All the best for tomorrow morning xx
Thank you so much. Treatment changed to today. It's early am. Can't sleep, been reading and now reply to posts.
I'll ask about BC nurse today at treatment.
Big smiles and regards
