Hi Everyone - so I found this site in January when I got diagnosed with grade 3 triple positive breast cancer at 39. Been stalking the boards for a bit trying to find the right one - all of the women here are such rockstars and while it’s not a fun club to belong to it seems like such a wonderful and supportive community. My nurse told me I need to stop thinking about it and finally join in on a support group so this seems like a good place to start. I had my chemo education meeting with my nurse today about my TCHP treatments and oh man it was HEAVY. I will start sometime in the next 2 weeks. Got a couple scans and bloodwork to do first but then they are kind of leaving it up to me and my calendar - I hate making decisions and there’s so much of that to do! And so much to consider with two little girls at home but they are so resilient - it forces you to be even stronger doesn’t it? So anyways that’s just a little snapshot of me. Sometimes this cancer journey feels lonely even with all the people I have supporting and loving through it. I’m so thankful the sun is shining today and I can soak up all the positive energy!
Gonna need to start my Amazon wishlist with all the great items some of you have suggested! Anyone a teacher? I haven’t told my students or many of my coworkers yet but feel like maybe next week it’s time now that I had an idea of a start date. Any tips?
Okay I’m done rambling! I hope all of you that have started your treatment are doing well finding your sunshine along the way.
I have been lurking since early March when diagnosed with ER8+/PR8+/HER2 positive 2.5cm Grade 2. Currently stage 2A as no node involvement on ultrasound/CSEM mammogram but obviously aware that can change after surgery.
As I had my first chemo session this morning (Not sure I’d call it ‘Good’ Friday) I thought I would join this ‘club’ Must admit I was very scared first thing, but it actually went much better than I anticipated (Docetaxel, Carboplatin/Phesgo). As I’m 62 post menopausal (obvs!) I decided to try the cold cap as I had seem some worrying data on permanent hair loss in post menopausal women on Docetaxel. I found the cold cap (Paxman) fine, even the first 10 minutes were bearable, after that I wasn’t really aware of it being there. Just hope it works. Not so concerned about the temporary loss (although it could be tricky explaining it to my elderly mum who has dementia), but the thought of permanent loss is scary (even at my age!), so I’m hoping this will help mitigate that
The rest of the procedures were fine. Phesgo injection first - nurse was very kind and I only felt a sting when it went in. The infusions were OK too. I was there about 5 hours due to the cold cap but there is plenty going on, so the time seemed to go quickly. Even got a free NHS sandwich for lunch -not exactly M&S but edible!
Hope you ladies are doing OK. No pearls of wisdom from me today as I’m a newbie but thought it might be useful to share my experience.
PS - I’m useless at social media. So hope this post ends up where it should and not in the ether somewhere, in which case I have just spent 10 minutes writing for nothing!
Thanks again to the Feb/March starters for helping us along.
Hoping the new starters are managing ok with any side effects.
On day 6 from my first one and feeling well. I can’t get past 4am but a midday snooze gets me through. Getting some walks in , doing jobs as normal and eating the same. No nausea at all
It feels like Covid days again, steering clear of infections ( At least we’ve had a practice!) - I think I’m maybe being too cautious and need to chill a bit!
Did you all go out shopping/ seeing friends/family inside as normal?
@suewil very good question. I’d say yes but with a few provisos. Avoid being in close proximity/indoors with people who obviously have coughs and colds. You really don’t want to catch anything as it’ll probably turn into something worse than you’d usually get, you’ll need antibiotics and your treatment could be delayed. We’re very susceptible during this period. Yes think Covid rules! I’d avoid entering very crowded/stuffy indoor places like small gyms, pubs, cafes etc. A large airy place like a big restaurant or a big gym studio should be fine. It’s about minimising breathing in germs from people you don’t know in an environment you can’t control. I still go to my gym but it’s large and I know the times when it’s almost empty. In a Pilates class I can tuck myself in a corner away from others. Exercise during cancer and chemo if you can manage it is really important so try to keep it up. If you end up neutropenic you need to be even more careful.
Equally you need to see other people so you don’t go mad and for mental health. Chemo isn’t meant to be a punishment! Just be sensible.
Another thing they say a lot is wash and sanitise your hands as much as possible. And wash all your fruit and vegetables. It is definitely very similar to covid/pregnancy! Even the nausea and some of the side effects remind me of being pregnant haha
Hey @suewil when I spoke to my oncologist pre chemo I was really worried because I didn’t want to have to fully isolate myself away, I have 2 young children so alot of playgroups/kids parties etc and go to the gym! He said to me it’s still OK but use caution, I still go to playgroups but choose the quieter ones and it’s getting abit easier now that there’s more outdoor ones in spring. I still meet up with friends as normal. We’ve been on lots of days out in the Easter holidays as we normally would indoor and out, but I make sure I’m washing hands more regularly and sanitising, keeping hands away from mouth etc! I avoid crazy busy places like soft play in the holidays (tbf I probably would anyway ). Like Sam says just use caution, try larger/airier places as opposed to really busy ones.
He said to me it’s important to keep mentally positive to get through treatment too because their main goal is to get us to the end of treatment so if that means going out for coffee and cake for friends so be it I think doing normal things has helped me so much!
Apart from the few days I feel the side effects I don’t feel like I’m going through chemo because life is just pretty “normal” xxxx
Thank you so much to you all taking the time to reply to my questions. I think I was feeling a bit daunted with 18 weeks to get through avoiding infections.
I spend a lot of time with our 2 Grandsons 2 & 4 so will enjoy lots of outdoor fun with them.
Great that it is better weather ahead and not the depths of germy winter. I’ll bear in mind all your advice and carry on sensibly.
Hey @alpacagirl - we have the same diagnosis so I wanted to check in. How are you doing today after your first chemo? I hope your side effects were at least manageable and you found some rest and comfort. I’m not starting chemo until the 22nd but will have the same treatment. The whole thing is very scary and the hair loss has me completely deflated - my oncologist doesn’t recommend cold capping said I’ll lose my hair anyways but I’m still not convinced. I guess I have 2 weeks to decide for sure and I really really hope it works for you! I’ve seen a lot of women post about their successes! The permanent hair loss is a definite fear of mine also - although my wise 10 year said it will be okay because I’ll still be mommy right?
Hi, hope everyone is doing ok. I had my first (slightly delayed due to another biopsy appointment)EC yesterday. Felt ok but then I stupidly ate quite a lot and then felt super sick all night - I think folk said it was a bit like pregnancy nausea which I think is pretty accurate albeit I only had that really badly with my first.
I’ve had my steroids and antisickness but I’m to take this with food and I really don’t feel like eating - I wondered if a mini milk ice lolly was ok or something similar that doesn’t make me feel like throwing up - any tips? I’m actually gluten intolerant so I know people eat dry bread but gluten free bread is pretty disgusting if it’s not toasted (although I did think that if I get constipation I will probably just eat some normal bread which always results in me running to the loo).
Ive heard of people eating frozen pineapple to help so maybe frozen fruit sorbet would be good, the fruit ice lollies. Also never forget the power of a ginger biscuit or herbal ginger tea, even a fizzy ginger beer might help
Tr y a really good Italian make GF pasta, it’s far better than any of the supermarket own brand GF pastas and certainly the ghastly breads. DH makes a simple mild GF cheese sauce.
M&S make a decent ginger snap type biscuit that is very gingery in their ‘Without Wheat range so you can have a decent ginger biscuit to nibble on.
Mesa sunrise cereal (GF) added to a little yogurt and fresh fruit is rather good as a healthier desert or snack. You can make porridge using GF oats and home made soup is always a good one to have to hand.
Jus-rol have produced a really good ready to use GF puff pastry. IT does not rise as much as gluten filled pastry but it makes tasty sossy rolls and can be used to make on the go healthier snacks. Follow the cooking instructions and try to handle with care or you will knock the air out of the pastry. It’s far better than breads.
Check out some of the recipes shared in the Tips section under ‘cancer made me eat’ as many are GF or can be easily adapted to GF.
If nausea is an issue that lingers speak with the hospital as there are alternative drugs if the ones you have been given are not helping. Expect to feel a tad unhungry for a couple of days but try to eat what you can when you can and make sure you are drinking the minimum of 2 litres a day to help your body.
Yes absolutely. For the first week (atleast 5 days really) I take the anti nausea tablets 3x a day, even if the nausea is only minimal. By the 2nd week I dont need them at all.
I think they can cause some constipation so fruit everyday helps and I can eat that anytime without sickness. I also take the herbal constipation tablets each day for a few days after chemo just incase
Hi… thanks for asking. The first 3 days were fine, but I have experienced symptoms since then - mainly fatigue, acid reflux, bitter taste and a higher than normal heart rate. All pretty normal I think. Not sure if you are in the UK but we get given an ‘alert card’ with a number to phone if any concerns. I tried it yesterday as wasn’t sure what medication I could take for reflux. It worked well and I got a quick response to try Gaviscon first - seems to be helping.
I can understand you being scared. I was too. But honestly I felt much better in myself as soon as the treatment started. I think its partly fear of the unknown. I’ll know what to expect at the next session. Cold capping was a tricky decision for me. Paxman website says approx 67% will retain around 50% of hair but you just don’t know. As the risk of permanent loss is higher in post menopausal women, I decided to try it partly because I have a mum with dementia and I was worried she might be frightened if she sees me with no hair It might well happen anyway of course. You have to do what’s best for you. Your 10 year old sounds very sensible. You will still be his/her lovely mum whatever.
I’m 56, post penopausal and on weekly Paclitaxel. I haven’t cold capped and 8 weeks in I’ve had hair thinning but not gone bald by any means and it is actually growing again since I shaved it off. So it’s not a given that you’ll lose all your hair, it’s very individual.
@sam1204 it’s interesting to hear a perspective on not cold capping. I’m doing taxotere so different from you but still one of the awful taxanes. So you haven’t done the big shave yet? I always wondered how long the hair would actually hang on without shaving but it’s hard to find that info as I know it gets annoying and sad to watch it slowly fall out.! 8 weeks with thinning And also new growth! That gives me hope!
@alpacagirl the permanent hair loss is such a fear! And agreed it’s such a tricky decision and there are just so many decisions! And with a mother with dementia I completely understand wanting to give it a go! I hope it continues working for you!
I’m glad to hear you are doing fairly well after your treatment - I know a few days after can be a bit harder than the first. Hang in there!
It might well happen anyway of course. You have to do what’s best for you. Your 10 year old sounds very sensible. You will still be his/her lovely mum whatever.