So far pathology etc result of grade 3 invasive carcinoma NST .ER- PR- HER2 pending. Got results via zoom at my request because I was on the road.Off to GP today for referrals then into BSQ tomorrow for info session. Trying to navigate my way through the lingo 😩. Not sure whats ahead…..feeling lost.

Hi @Number2 Sending you hugs for your neoadjuvant chemo.I did TCHP for triple positive IDC last year. When my hair started falling out, I did a number 4 with the clippers. I didn’t need to shave as the rest fell out anyway, but there was less mess as it was shorter. I wore a bamboo beanie as it was warm (for winter) and soft for my head.Hopefully someone else can help with the nostrils and armpits, as I didn’t have those side effects. Definitely contact your oncologist if you are concerned about the armpit swelling.My tongue would be thick and horrible in the first week after chemo. Everything tasted bad, including water so I struggled to eat and drink. I would gargle warm, salty water all throughout the day or Oral7 mouthwash. Also try chewing gum.All the best

hi @Number2 I am so sorry to hear about this diagnosis for you. Understandably you are wondering about how this could change your plans in 2025. I echo @iserbrown - it’s a frustrating wait for you because the duration of your active treatment will depend on your results. It will be tailored to take into consideration many things including your pathology (noting you have had a biopsy already) your family history, and a CT scan/or MRI or PET scan along with the size and location(s) of your breast cancer.When I was diagnosed I remember being astonished there was so much variation in the types of breast cancer and therefore so much variation in treatment. I really didn’t absorb quite how long I needed to make space for my specific treatment in my life. If it helps I can share my treatment timeline.The main thing was my diagnosis as HER2 positive (only 15-20% breast cancer diagnoses are HER2 positive). I was also oestrogen positive and progesterone positive.HER2 positive treatment is usually administered over a 14 months timeframe. On the upside the treatment is very targeted and effective. I commenced in March 2023 and finished 14 months later at the end of April 2024. Luckily the treatment didn’t cause side effects for me that required the treatment, surgery or radiation therapy to be stopped. I hope it gives you an insight into the duration and if it turns out you are HER2 positive please sing out if you have any questions. Sending you lots of positive energy for the days and weeks ahead as you continue to work through your diagnosis and what 2025 could look like for you.

Hi @Number2 some great tips there from @Blossom1961 and @iserbrown 🌺🌻🌸🌷Nails: I think the medical term prefers you to wear something that isn’t too hard to remove. My surgeon required nail polish off for my lumpectomy. I had the chalkiness, splitting and discolouration but also, one of them became infected* (fairly late into the 6 cycles) so think about polish that’s kind on the nails and easy to remove. *My GP prescribed antibiotics to fight the infection.I agree with @Blossom1961 and encourage you to feel confident about asking your medical team if you’re not feeling too good after treatment. On the couple of times I needed to, the nurses were very kind and responsive and constantly assured me they would prefer we erred on the side of caution and called them, or that we present to emergency if it’s after hours, to be on the safe side. Here’s some suggestions, in line with @Blossom1961 ”be prepared” I received a care basket from my lovely niece with a few of these items in it … Biotene (you may get mouth ulcers) soft bamboo tooth brushsensitive toothpasteCanesten cream (thrush under the breast was an issue for me)box of Mylanta [the nurses and doctor will dispense the anti nausea prescription “big guns” immediately before and after chemo], Hydralyte or GastralyteGastro-StopMovicol (some people experience constipation whereas I was the opposite)Moo Goo moisturiser Hylo Forte eyedropsTissues or hankies (I never knew what a great job nose hair does until mine went MIA during chemo 😃)Facemasks (it’s advisable to avoid big crowds during the first 6 doses but if you have to be out and about you might be more assured masking up) A notebook to keep a record of how you’re feeling and the information you’re given.

SO sorry to see you joining our select little group here, @Number2 xx We all still remember that day that we were told 'You've got cancer' .... and it is a bit like a cricket bat to the head :( You don't remember much after it! We'll do our best to help you thru this .... it sounds like you've already had your surgery? Or are these results from your biopsy? See if they can send you through a written report on your pathology results - and if you've been assigned a Breast Care Nurse, you can ask her all the questions ... but feel free to put stuff here & those with similar results will be able to help you understand it all, in plain English. If you feel a tad overwhelmed, please consider calling our Helpline to have a chat with a sympathetic person xx. 1800 500 258 - Mon-Fri, 9-5. Just talking to someone should help calm the nerves & prepare for the 'next step'.Check out this thread for lots of 'general' info about the forum - including some other threads that may be helpful to you. Some 'off topic' threads may give you a bit of a giggle, or if you are into art & craft, pets or gardens, you can show off your bits there xx We have lots of informative threads too .... and some 'tick sheets' down the bottom that may also help you self assess your mental & physical health - that you can print off & take with you to your appointments - sometimes it is easier to give them the 'ticked sheet' than to actually talk about it, when it is all so 'fresh' .... it does get easier, with time tho xx https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latesttake care, remember to take it just one day at a time, one hour, if necessary .... try not to get ahead of yourself with the 'what ifs' ..... and definitely stay away from Dr Google. A lot of info there is just plain outdated, or not relevant to your own diagnosis xx. Whack up any question that you have, here & we'll do our best to give you an honest answer .. as we've 'been there' and 'done that' .... and understand what you are going thru just now.Wishing you all the best xx

Good morning @Number2 that’s progress 🌸🌷I really hope Friday goes well for you when you meet with your surgeon. Their recommendation and guidance at this first interview usually gives us an initial idea of the treatment plan. From the information you have you’ll see the next steps can be really variable, it all depends on your specific diagnosis, and your particular situation.Some people have surgery straight away, whereas in my case surgery was 6 months after my diagnosis. Because of the particular characteristics of my case the usual approach was to have chemotherapy first, before surgery and, if needed, a bit more afterwards. Will be thinking of you on Friday. 🌻☺️

Lost | BCNA Online Network

53 Replies

Tri
Member
3 months ago
Hi @Number2 my hairdresser took the clippers to me after treatment 1, as my hair was coming out at the slightest touch.

Agree - Biotene or Oral 7 can help, it was explained to me that these are more than a regular mouthwash, they try to mimic the lubricant job that your saliva cells would normally do which might make eating and speaking a bit easier. I found having Fruit Tingles livened the mouth up a bit but not so good if you’re battling mouth ulcers.
@@Afraser recommends asking at the pharmacy about nose oil.

Sending you lots of energy 🌻 and virtual hugs during this not so fun phase ❤️🌸
Number2
Member
3 months ago
Thanks @katie46 but my breastcare nurse has not responded from 3 days ago…….as usual.
Katie46
Member
3 months ago
Hi @Number2, I buzz cut my hair when it started falling out, it was more comfortable once I did that, but I left the rest to fall out by itself. I think I read somewhere that it was better to leave a bit of length to help the hair fall out.

Biotene mouthwash helped me a lot, I had a dry mouth, especially at night, and I'm sure I read on here you can get an oil you can use for your nose.

I would talk to your oncologist or breast care nurse if you are concerned about the lumps under your arm, they will know if it's a known side effect, or something they want to check.
Suki
Member
3 months ago
Hi @Number2

Sending you hugs for your neoadjuvant chemo.

I did TCHP for triple positive IDC last year. When my hair started falling out, I did a number 4 with the clippers. I didn’t need to shave as the rest fell out anyway, but there was less mess as it was shorter. I wore a bamboo beanie as it was warm (for winter) and soft for my head.

Hopefully someone else can help with the nostrils and armpits, as I didn’t have those side effects. Definitely contact your oncologist if you are concerned about the armpit swelling.

My tongue would be thick and horrible in the first week after chemo. Everything tasted bad, including water so I struggled to eat and drink. I would gargle warm, salty water all throughout the day or Oral7 mouthwash. Also try chewing gum.

All the best
Number2
Member
3 months ago
couple questions tonight. Had 2nd round of neoadj for her2+. So hair is maybe 1cm……do i get it shaved or leave it be and why? Sticky nostrils from no hair…..what do i clean and moisten with? Tounge feels wierd, I thought it was thrush but maybe just tastebuds dying?. And finally…. both armpits are tender , I can feel small lu,ps under the skin….do I GP or call oncology clinic and chat to them?
Blossom1961
Member
4 months ago
Bamboo sleep caps can be bought online, at a wig shop or a good hat shop.
Number2
Member
4 months ago
Where is the best place to buy the bamboo sleep caps?
arpie
Member
4 months ago
Great that you were attended to quickly at the ED, @Number2 ... I think they keep the front curtain open, so 'they' can see if you get distressed/have an incident - as many of these things are 'silent' & would be missed if the curtains were drawn - so anyone walking past would spot a problem situation pretty quickly & act on it. They usually only draw the curtains when you are being checked out by the Drs or having procedures done etc xx. Great that your partner helped you on the way out xx

Keep the fluids up and take some Gatorade as well now & then ... terrific you are seeing your GP tomorrow & also chatting with your Onc.

Hope everything settles down for you soon.
Tri
Member
4 months ago
Hi @Number2 my diarrhoea took about 3-4 days to settle. I didn’t experience it so intensely with the first dose but it’s possibly because I didn’t (for a variety of reasons) take any Maxollon after the first treatment. Maxollon is the anti nausea medication that the nurses cautioned can sometimes contribute to a runny tummy. After my second treatment I had it but the nurse on the ward mentioned it’s side effects can be balanced out with Ondansetron (the other anti nausea drug) as it can have the opposite side effect, and so counteracts the runny tummy.
In the next few chemo rounds I reduced how frequently I took these anti nausea drugs.
I hear your reservations - a supportive partner comes into their own! We are very fortunate with our facilities in my regional city but it is worth considering the risk of encountering other possible sources of infection when you’re immuno suppressed, so yes there’s a quandary if you need to go in and if you do, best to mask up. Sending you lots of positive vibes, and hopes for a firmer 🙃better day ahead ❤️🌸🌻
Number2
Member
4 months ago
Thanks @Tri and @arpie, How long was your phase of gastro? I have a gp appt monday morning, getting a new gp, and a “ how did u treatment effect you” follow up phone appt with my onco on monday afternoon so was hoping not to have to ED tomorrow but will see what the day brings.
I have watched my temp and no rise as yet.
Day 5 after treatment I felt so crook and washed out I thought I was dehydrated, I was struggling to drink and eat enough that I got hubby to call ambo and encountered my first trip to ED as my temp did spike. Now don’t get me wrong I’m grateful that we weren't “ramped” and i was triaged quickly but the absolute lack of privacy when you are laying on a mini slab for 3 hrs with the curtain at the foot of your bed wide open so that everyone is looking at you and the drunks are staggering past while you wait for blood results and a chest xray. The multitude of coughs flying around the room…….oh but there was some type of portable air purifier parked next to my bed,I was given a half bag of fluid, iv maxalon and iv antibiotics. Apparently I have to have bloods, urine, xray and be seen by medical dr before they are allowed to get an onco dr to see me. Anyway was seen and told its just your reaction to chemo, your not dehydrated and you don’t have a temp , you don’t have diarrhoea (at that point) and the guy palpated my gut that hard I nearly flew off the bed, bloods are fine so here have a sandwich and then go home. And yep even though you are fatigued here let me point you in the direction that you have to walk your own ass out seeya! Thankfully I have a loving hubby who was happy to walk the long slow walk with me…………what happened to wheelchairs out of hospital to the pick up spot?… I’m obviously out of touch.
Not too keen to go through that again unless it’s absolutely necessary.