Triple positive stage 2 disgnosis

FeR

Hi everyone, I’m Fe. Sad to be joining you all but grateful your all here.
was diagnosed on 22/7/24 with triple positive stage two breast cancer and had the second of my neoadjuvent chemo and targeted therapy yesterday. Overwhelmed sad frightened and struggling with early side effects that have already resulted in 10% decrease in one of the chemo drugs for yesterdays session. Wondering if anyone else had really bad side effects from their first round of tchp protocol?
sending everyone on this journey all the best.

arpie

I am So sorry to see you join us here, @FeR ....  We have a private group for those with Triple Positive that you can join & chat with those who are also 'doing it'. Jump on this post & click Join & you should be joined up tomorrow xx
https://onlinenetwork.bcna.org.au/group/31-triple-positive-breast-cancer-tpbc

Also, consider checking out the podcasts by Charlotte Tottman - as she is a specialist BC Counsellor. She's had a double mastectomy, stayed flat and KNOWS what we've all gone thru!  She was surprised too, at the emotions she went thru herself, as they were different from what she'd 'thought they were' when she was counseling women prior to her own diagnosis.  So she 'gets it'.  They are very easy listening too. xx
Go to this link, click on the 'list' (it should show 22 tracks) and start off with No 13 (the first one of Series 1) and work your way thru them.
https://soundcloud.com/search?q=charlotte tottman

Also, check out this post for lots of 'general' info on the forum that you may like to look at too further down the track! (Even some funny bits, as we all need a laugh xx)  You can show off your garden, your fur-kids, your art & craft ..... or start a new thread, with your favourite hobby!     
At the bottom of the post are some Tick Sheet PDFs that you can print off & fill in, to follow your physical and mental health .... that you can take along with you & show your team, if you need xx
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

Wishing you all the best for your ongoing treatment xx

Tri

Hi @FeR it sounds like you’ve had a rough time of it so I’m sending you big virtual hugs.
@arpie’s post has some great information in it and we do have a triple positive group you can join. 

I was triple positive (diagnosed in Jan 2023) and I also had targetted TCHP neo adjuvant treatment. 

It’s no cakewalk, that’s for sure. 

I did struggle with a range of things including sunburn-like redness and heat on my hands, face and feet. I was hit by jet lag like fatigue. Some things I experienced included losing my sense of taste, my appetite, mouth ulcers, thrush, hair falling out and later on in the regime I began to experience diarrhoea. I am glad the dose has been reduced a bit for you, this was the case for me too and it did halt the worsening of my redness on my face. 
My tumour responded well despite the dose reduction and shrank by the time surgery went ahead.
My coping strategy was to remind myself that the chemo was doing its thing and I took the anti nausea tablets the oncologist prescribed. I just tried to focus on each 3 week phase and generally began to feel more myself by the third week. To preserve energy I paced myself and went into a bit of self imposed lock down, listening to audiobooks, sleeping if needed, and just seeing a handful of folks for short visits on weekends or weeks two weeks after the chemo during the TCHP phase. I relied on my very supportive husband to ferry me to appointments and I was very grateful to receive beautiful home cooked soups and soft food that I could eat. 

After the fourth dose the oncologist discussed the side effects with me and said I could try having small doses weekly, instead of the regular dose every three weeks, to see if it was better tolerated. 

I opted to stay in the three week cycle. 

I found starting a specialised oncology exercise physiology program with the hospital a very positive thing, as I was experiencing loss of strength and the program helped me feel like I could rebuild it. 

The adjuvant treatment was much more manageable. I finished the treatment at the end of April and am all clear.

Very happy to chat more if you have any questions and sending you ❤️🌻 best wishes for getting through this next few days and weeks.

Suki

Hi @FeR
I was diagnosed with stage 2 triple positive EBC in December 2023, so have completed 6 rounds of TCHP, had surgery and am now on Trastuzumab (Herceptin) only and have started anti-hormone therapy.
I am also in WA and am being treated at SJOG Subiaco.
The three weekly TCHP regimen is hard.  After the first session, I had a bad diarrhea so Gastro Stop became my best friend! Make sure you mention your side effects to your team so they can suggest remedies.
You can do it - while it is hard, it does work.

arpie

Hi @Suki

Great that you are finding your treatment 'doable' ... 

Feel free to tell us a bit more about your story so far here:
https://onlinenetwork.bcna.org.au/categories/newly-diagnosed

I'd suggest you join the Triple Positive private group (where only members see what is posted) ... it is a fairly new group but I am sure your input would be appreciated as well xx
Click on this link & then click 'join' ...
https://onlinenetwork.bcna.org.au/group/31-triple-positive-breast-cancer-tpbc

take care & all the best on your continuing treatment xx

Tri

Hi @Suki it’s really supportive to hear about how you experienced TCHP and how you are finding your current phase with Herceptin only, thanks so much for sharing it (and I agree with the tip about Gastro Stop!) 
It would be great if you and @FeR might consider joining the Triple Positive group as it’s quite specific treatment and it can feel like a long haul. 

Thanks @arpie for making the link available and your support too ☺️

FeR

Thanks so much @arpie, @Suki and @Tri for your responses. I have joined the Triple Positive group and am really grateful there is one specifically for us as initially I struggled a bit to find information on people having the same type of treatment as me. 
My second round of TCHP hit me hard with fatigue and nausea (I couldn't even begin to work out how to respond to messages in the last few days) but I didn't get bone pain this time so no opiods and very pleased about that!! Sadly my peripheral neuropathy which is the main reason for the reduction in docetaxel has got a bit worse again so I'm not sure what they'll do about that...it frightens me I'll get stuck with it and never be able to drive again. I'm also frightened that my liver and kidney blood tests were marked as high and the kidney ones for potential specialist management, they were all good before the first dose - I lie there worrying they'll get the cancer but the treatment will get me, or that they won't get the cancer and the cancer will get me or a thousand other things...I worry a lot at the moment. 
I'm still a little unsure how to work out how to reply directly to peoples individual comments rather than tagging everyone in...and my chemo brain is not helping....but I'll jump into the private group and connect with you all. Thanks so much for sharing your experiences - I'm so sorry you are having them but it helps to know I'm not the only one going through the same thing. Sending you all the biggest of hugs xx

arpie

Try not to get too ahead of yourself, @FeR .... My Dr suggested trying Mindfulness .... staying 'in the present' as you have some control over that - whereas imagining all sorts of stuff in the future, can just scare the crap out of you, & you have no control over that - other than it upsetting you 'now'! xx  Also, consider ringing our Help Line too - Mon-Fri 9-5 on 1800 500 258 (up in the blue banner at the top of the page.) Sometimes it is just nice to be able to talk physically with someone xx

Take care & all the best xx

FeR

Thanks @arpie I have a wonderful yoga practice (and a wonderful pain psych whose helping me through this journey) and that has helped but its in the night when I can't sleep and my brain starts that the techniques I've always relied on don't necessarily work....my mind has always liked to chatter away but at the moment it could talk underwater ha ha.
And yes I think calling the HelpLine might be really helpful for me xx

arpie

It is great that you've been able to avoid Opioids as they really are quite dangerous, specially if ending up depending on them ...  There was an article in the Sunday Paper about the reliance of people on Opioids - with bad outcomes   

Maybe consider having a chat with your specialist/GP about the possible use of Medicinal Cannabis Oil as it is 100% legal now and can help with side effects of chemo too.  I've been using it for a few years now & it really helps ME with sleeping.  I HATE it when I can't fall asleep!!  I take it only at night now, half an hour before I go to bed (less than 1ml) and it really helps me nod off & stay asleep.  If I forget to use it - I am awake on & off ALL night & it is a real pain in the proverbial!  Depending on the strength, it can also take the edge off pain too ... so a win/win.  
Take care xx

Tri

Hi @FeR big virtual hugs ❤️ for the worries, this is understandable and shows up in us in so many different ways.
i am so sorry to know your neuropathy has really affected your sleep and day to day life. 
We all experience the treatment differently, I hope you have signs of improvement soon.
In my case, after my oncologist reduced the dose, the redness and inflammation in my feet and hands gradually resolved by about treatment 4. I did try really hard to keep my weight stable because I lost about 4-5 kg in the first three weeks and I believe the doses are calculated against weight amongst other things. 
I continue to have neuropathy but found the oncology exercise program helped me with my foot balance, and since finishing treatment, the night pain in my feet really dropped back once I started regular yoga. I don’t know why but the pain no longer keeps me from falling asleep as it once did. Yay!🥳 
I was offered Lyrica for the foot pain but didn’t try it in the end. I still have some limitations on how much walking I can get under my belt each day without feeling pain later but the interesting thing is, for me every morning is new and I don’t have pain and my feet are good to go: another yay! 

A friend of mine who had developed neuropathy like symptoms after her chemo completed tells me she no longer has it (3 years on) so that’s a positive.

cactusk

Hi @FeR
Sorry to read you're having a tough time in the middle of this part of the 'journey'.
One thing I found useful and helpful when I was in the midst of active treatment, was I formed a whatsapp group with a bunch of my nearest and dearest. I have 2 friends that I spoke to directly with updates, and then they took turns in posting an update to the group. That way, I didn't have to tell the same things over and over, but the people I cared about (and who cared about me) were all informed at the same time of what was happening, and what was helpful to me at the time (walk around the block, them collecting me to take me to the markets, afternoon visits when I was up to it and wanting company). I could read the updates too but it just took the pressure off. Maybe that could be something that could work for you?
Absolutely sending all the vibes to the West (i'm originally from Perth!) and hoping the side effects start to become more manageable for you.
Kx