I have been diagnosed this week after finding a lump. Im really scared that this is the end for me as I've read it's one of the worst breast cancers to have. Anyone had this type and can reassure me?
That's really good news! I imagine that's enough to keep you going. I'm not sure what time dactyl my treatment plan is yet. My consultant mentioned weekly chemo and the breast cancer nurse mention 3 weekly cycle but I'll await to hear from the hospital as I imagine they're the ones who will plan it out.
Think I might start researching wigs.
oh gosh you definitely can't work in a supermarket! We're supposed to have building work start on 3rd Jan and the nurse said I really need to look at putting it off due to the risks. Feel like the next 12 months are just on pause.
I was also diagnosed with IDC triple negative. My consultant also told me it is totally curable, so with that in mind, it's those very words which keeps my positive thinking going.
We can do this Bella, we can all beat it, believe in yourself sweetheart
Ah thank you! I've been a lot more positive recently. Treatment has started and I've just completed my 6th weekly pacli taxol/carboplatin, got 3 more to go and then onto the dread EC 'The Red Devil' . The name is enough to send shivers. Thankfully I've not had any major issues with the weeklies other than some of the obvious and fatigue but I try to nap before the kids get home to see me through the evening.
i hope you're both well on your way with your journey to blasting this thing away! Xxxx
I am soon to start chemo, starting with EC for 4 rounds and 4 rounds of Docetaxel/Carboplatin.
I feel scared, especially as at the moment we aren't allowed anyone to come with us for some comfort. Can you give me some insight as to what I am to expect?
im currently on pacli taxol/ carboplatin weekly for 3 rounds and then I move onto EC. I'm also currently cold capping. To be honest I've been largely quite well mainly digestive issues, fatigue and nausea (manageable with the meds). It is cumulative so each week I'm more tired but it's not like I imagine it.
The nurses are great and I would say be honest with any side effects as they have lots of hints and tips to help you through.
on treatment day the first is the most scary as you don't know what to expect but you soon get into the swing. I take my iPad and download lots of cheesy things to watch that aren't too taxing and drink loads of water! You want to flush it out. If there's anything you want to know just ask ️. I'm only 6 weeks in so still a newbie. I've joined a fb group specifically for TNBC it's a U.K. group (joined the American one by accident at first). Lots of useful tips and a good way to vent with others going through the same thing.
I am also thinking of cold capping. I was told I would lose my hair almost immediately, although it differs from person to person. How long are your sessions? Mine will last approx 1 hr in the first round and be more intense as it increases to 3-4 hrs in the last 4 rounds. Also have you got a cannula in your arm or the back of your hand? Yes it is very scary!
Hopefully it won't be too long before I start my first round
My wife has found the cold cap to work. However, she stopped using it after 3 sessions of EC (she's had 1 more session of EC and her second type of chemo since stopping and her hair has thinned, but still has hair albeit she cut it short herself). It was thinning prior to her stopping using it. The main reason why she did stop it was due to the thinning and finding hair everywhere and the 2 or so hours it added onto the actual chemo appointment. She found the hair thinning quite stressful, so bit the bullet so to speak.
But it does work for some people. your hair will probably thin to some extent even if it does work.
Not a problem! I remember those early weeks and the constant unknowns. The first session was scary as I had no clue what to expect during or the days to follow. Take the meds even the extra ones you get if you feel nauseous. Makes such a difference. I got heartburn so my oncologist gave me something for that and I hate to say but constipation. The anti sickness causes it and it's important to stay on top of that. I've learnt to manage the above which makes it easier.
With my treatment I have pac for an hour and then carboplatin for 30 mins. Mine is broken down so I receive carbo weekly rather than an extra hour and a half on week one of the cycle. I have thick hair so I cold cap 45 mins before pac and then 90 mins after, during that time I have carbo and a flush so it kind of fills the time a bit. For me so far it's worth it to retain what I can. I'm on week 6 and have had more shed this week than any other but most wouldn't know it. Slightly patches along my parting and my hair isn't as thick. I've purchased toppik powder to help fill in anything I can see but many others wouldn't know.
in terms of cannula, I had to have a port fitted after my second session due to issues getting one in. I found that mentally tough but now it's the best thing I could have done. They use it for all bloods and treatment. Kinder on the veins but more of a commitment. Not everyone has issues with this so fingers crossed that's not the case for you. Xx
I'm not as far along the journey as ye but I'd decided to go for the shave before chemo. I don't want people to know....I don't tell them the rest of my business :) Going to do it for charity and if people suspect the reason they can, I won't be telling.
I've been reading how you're doing with the cold cap and now I'm not so sure. The consultant today said to get down to the wig shop although he doubted there'd be anything like mine. I said I could paint up a mop top and use that :)
I already lose a good handful of hair each wash but it's not noticeable. I'd have to keep colouring it though...it'd look really odd else. Not sure I can colour it on chemo, I know I saw something about not colouring it too quick after chemo. Read so much lately :)
