I noticed @feck had mentioned the BCN secondary group so I thought I would post the link here
Secondary breast cancer is full of uncertainties. But you can count onLiving with Secondary Breast Cancer to be there for you, no matter what. You’ll be able to talk, listen and learn with people who understand the challenges that secondary breast cancer brings. Our groups are open to people with a secondary diagnosis. Monthly sessions, facilitated by a therapist, are held in a variety of locations across the UK and online. Find a group. And if you are 45 or under? Our Younger Women with Secondaries Together events provide information and support
LiveChat: Open to people with a secondary diagnosis. A private chat room where you can talk to others in a similar situation.
Someone Like Me: Will match you with a trained volunteer who’s had a similar experience to you. They’ll be a phone call or email away to answer your questions, offer support, or simply listen. Call on 0800 138 6551 or contact our email volunteers may be able to match you with someone else living with secondary.
Hope the links help.
@feck I cold capped and wore my glasses, Paxman recommend wearing them over the neoprene outer cap. I didn’t find this out until a few weeks into my weekly Paclitaxel and ended up with bald patches above my ears on both sides. But overall I kept most of my hair. I did cut mine into a pixie from a bob but after finding Paxman I think I could have kept the bob. My hair thinned but it wasn’t so noticeable. You seem so organised. I hope sharing your diagnosis on here helps as I noticed you said you haven’t told many people in your life. I hope you have someone close that can help if you need it. I had my husband and he was brilliant.
For all please look at and book the course on Look Good Feel Better charity. Great for skincare and makeup, nails ( especially if on taxane chemo eg Docetaxel/Paclitaxel) and hair care etc
Cancer Hair Care Jasmin is great and works with Look Good Feel Better as well as Paxman for cold cap @feck already posted the link. Please check it out if cold capping as many do not fit the cap due to time and it can prevent it from working properly. Your time is booked to include the cap fitt8ng so don’t let the nurse rush it.
Little Lifts are a wonderful charity who will send you a chemo bag of goodies if you provide your diagnosis, this information is destroyed once the parcel is issued. I still use my fabric bag regularly.
Thanks @naughty_boob for your help.
I’m in the BCN SBC Group in Belfast. I joined just after my secondary diagnosis and it has been invaluable as we are all in a similar position. We really do support each other. I would recommend it to anyone with SBC.
I am doing a virtual LGFB Nailcare workshop tomorrow evening and a Hairloss one on Thursday. Also one for Wigs, etc in a few weeks. I’m still undecided about the cold therapy socks/mitts so I might get some advice tomorrow.
K x
Let us know how no.2 goes - my 2nd is a week after you. Hoping will go like my first one. Have a look at what @naughty_boob posted below on some of the support this forum can offer.
HI @hasnae87, I hope you are feeling a little better today.
Would it help to chat to our team of breast care nurses? Don’t worry if you’re not sure what to ask, or if you need time to think things through - our nurses are happy to talk, at your own pace.
You can reach us on freephone 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm).
Sending our warmest wishes
Bernard
I had my second round of EC this Morning. Hoping it’ll be similar to my first round. I found that if I kept on top of the anti sickness tablets then I was pretty much without nausea.
But the steroid crash was something else, my whole body buzzed and I had the loudest ringing in my ears for a day or two.
Not looking forward to the filgratstim injections again. I really struggled with these. Hoping I find a good coping/medication routine that makes the aches better!
I’m cold capping too. The first time I found it pretty much painless. Today though, I did feel that initial 15/20 mins of brain freeze which did make me feel a little nauseous. But, after those first few minutes it was fine
Is anyone else cold capping?
Also, how is everyone looking after their nails? I read on here that polybalm was recommended. I wondered if there might be a slightly cheaper alternative though that someone is thinking of using
my 2nd EC next week, also cold capping. I took filgastrim at 6.30 or 7 at night with a paracetamol. The only one I had any slight symptom from was the morning after the 5th but even then mild lower back ache that paracetamol quickly resolved
Nails - I bought and use vitamin E nail and cuticle oil which was suggested in another forum. Guess I’ll know at the end if it worked or not
Hi everyone! Good to see that everyone is having progress
I had my second chemo (only Paclitaxel) on Tuesday and so far feeling almost normal. Some nausea here and there but the antisickness meds are helping. The only unpleasant thing is an almost sleepless night after steroids but hopefully will catch up today.
Bought my wig today! I noticed that I’m mentally ready to lose hair in a way, bought a bunch oh hats, warned everyone around that it’s coming. In some way I’m in piece with this fact.
What are your plans for the hair loss/thining? Will you get a wig or just some covers (or nothing at all maybe)?
I had round two of Paclitaxel today. Same as last week, my BP/temp/heart rate went high so they triaged me. One of the nurses tried to stop it as she knows it happens but a Dr insisted. Everything was ok but gave me IV antibs just in case. Anyone got the chemo over 2 hours instead of one and all was ok. A 6 hr stay but home and yes wide awake but exhausted!
They now know this is the norm for me so say it will be ok next week.
Last week I was very tired and a bit iffy but didn’t take the sickness meds as I think it was partly stress causing it,
I got my wig last week but need a fringe cut into it by my hairdresser when I eventually have to go get hair shaved! I’m a bit traumatised by the thought of losing my hair so want to look as normal as possible. That might change as I will probably melt under a wig in summer!
Hi
I bought the Polybalm as it is ‘The Only Product Clinically Proven to Profoundly Reduce Chemotherapy Nail Damage’. It was recommended on Cancer Pal and somewhere else so I checked the Polybalm website. It is unfortunately very expensive but I thought if I didn’t use it and my nails were affected, I would regret it. Other products may work just as well.
K x
I think I’ll give evenings a go this round, see if it makes any difference
I’m injecting into my thigh as after the first two in my stomach I had really bad pain in my stomach. Felt like labour
This time round I have started the injections the day after chemo - still for 5 days. I am trying evenings this time round too.
Feeling okay, still on the strong anti sickness and steroids. I’ll have my last lot tomorrow and then the side effects will kick in
Hoping I find them easier this time round as I know more of what to expect.
One thing that has happened again is 24ish hours after the EC I get a hot, flushed face. No temp or anything though. Lasted last cycle for 48ish hours. Strange symptom I haven’t heard of anyone else having!
Finally starting chemo tomorrow after diagnosis Oct ‘24 and operation just before Xmas. (Grade 3, HR+)
Been putting this day out of my mind for weeks, as chemo has been postponed numerous times due to my boob not following the healing schedule and doing its own thing! (Considering it tried to kill me, the least it could do would have been to heal in a reasonable timeframe! )
So after going the scenic route to destination chemo, my question is what should I actually take to the session with me? What have you found to be useful?
The health board I’m under works with an amazing charity and they have provided me with lots of useful things to help during every stage of this process but I don’t know what will be useful during the chemo session itself.
Currently I have hastily packed:
a blanket
fluffy socks
cool bag to take meds home in
thermal cup
lip balm
hand cream
mints
a book
special boob pillow for comfort (had what is hopefully my last surgical procedure today! )
I was going to pack my iPad and headphones too but unsure if headphones will fit over cold cap.
And it already looks like I’m going on a long weekend camping!!
Sounds like you have packed everything you might need
I took snacks in. But depending what time you’re due to go in today, if around lunchtime- they might bring a sandwich, snack trolley round. They offered warm drinks too.
I made sure to have a big bottle of water with me.
I’m cold capping and not able to use headphone’s. iPad for reading or games to pass the time though
Are you going alone or having someone with you for company?
Just checking in as I was fully expecting to be a March starter after my first oncology appointment on Monday. But they have ordered an Oncotype DX to see if the score gives more information about whether I would benefit from chemo.
Having already decided that there was no option I found this chink of light really encouraging as theres a possibility the score will come back low and I wont have chemo.
That said, now I am worrying that if it comes back low and I dont have chemo would I be making a mistake as it sounds like I can chose to have it if i want to.
Im ER/PR+ HER- had WLE with clear margins but the only 2 nodes removed are both affected. Grade 2. Ive been offered full clearance or radiotherapy and im inclined to go for radiotherapy as the slightly lesser risk of lymphodema and because the 2 options are supposed to have similar outcomes regarding the cancer.
In my head Im thinking if they did do a clearance and found many more nodes affected then it would def be chemo, but if I dont have them all removed then no one will know how far its spread. And if I dont have chemo would that be a mistake.
Has anyone else had an oncotype score? Ive looked it up on the forum and it looks like people with a low score are not having chemo.
Its so hard to live a normal life with all this swishing about in my head.
Sending you all lots of warm fuzzies for a restful (and warm) weekend x
Hi lovely ladies,
I hope you don’t mind me joining this thread on behalf of my Mum. We’re thinking she’ll start chemo late March (and if it ends up being April I’ll hop over to that thread). All dependent on various tests coming back OK.
She was recently diagnosed with IDC Grade 3, ER 8, PR 6, HER2 +++ so her treatment plan is chemo first, then surgery and whatever else they need to throw at it!
She’s in her 70s, and doesn’t really do forums, but I think I’ll find the info useful to pass on and who knows, I may even persuade her to say hello!
I had a different chemotherapy treatment to you but I also found I had a flushed face the next day. I phoned my emergency line and they said it was because of the steroids. As well as taking some on the morning of the chemotherapy I was given extra to counter-act a reaction I had to the drugs. This double-dose resulted in me talking for England for the evening before crashing and then spending the next day trying to cool my face down
on the hair front great to hear your experience so encouraging
)
and they have provided me with lots of useful things to help during every stage of this process but I don’t know what will be useful during the chemo session itself.
xxx