Breast Cancer Now Forum

Congrats to Linda & Kathy for getting to the finish line. 2/15 rad sessions down for me & got my first of 26 Avelumab treatment after rads tomorrow so bit apprehensive. As it's a new trial it's just fear of the unknown but I know I'll be fine once it starts. Hopefully the side effects will be minimal as it's a year long treatment. Good luck for tomorrow if you're having any treatment/tests/appointments. Sam xx ... View more

I'm also under 50 and will be having 3 weeks of radiotherapy not 5. Maybe it depends on location and/or the individual treatment plan? ... View more

Hi ladies, I'm in too. 1st of 15 sessions on the 15th. Also signed up for a new phase III drug trial, which starts in a couple of weeks if I'm one of the chosen. Best of wishes, Sam xx ... View more

Thank you for sharing your experiences, it's really encouraging to hear that everything went well for you and that your recovery times were quick. I don't drive and I live only 5 minutes walk from work so at least I don't have that to think about. I'm a Receptionist at a Business Centre so I don't have any heavy lifting or hard labour to do so I'm lucky in that aspect. Also they've been very understanding at work and my boss has said that I can go back when I'm ready and that I can go home early when necessary, especially as it's usually so quiet on the run up to Christmas. I'm so lucky and I count my blessings every day that I have that kind of support around me and that I've been well enough to work throughout my chemo. I guess I'm just a little apprehensive about my op as I've never had one before and I don't know how my body will react to the anaesthetic. I felt the same way before I started chemo so I guess my body can take more than I gave it credit for. Thank you again ladies xx ... View more

Hello everyone. I'm having mx & axillary node clearance on right side next Tuesday (Nov 20th) and have chosen not to have immediate recon as I'm due to have rads - altho my surgeon & onco said it wouldn't matter either way. I just finished chemo on Oct 26th (3xEC & 3xDocetaxol both 3 weekly) so I was kinda surprised that the op was so soon (5 days after the 21st day of the last cycle). I think the biggest shock for me will be having so much time off work - I worked all through my chemo and don't ever use all my 20 days annual leave, which is probably a good thing as I can use the extra days left for recovery. Can I ask for anyone's experience of recovery time? I need to prepare for my finances as I'm on a zero-hours contract and won't get paid after my 2 weeks leave is up. Thanks in advance x And apologies for the long post x ... View more

Georgie Gee, I read beforehand that this is quite common. I lost my taste buds between days 8-13 and found it very weird and unsettling. Everything tasted like nothingness, I think I was as prepared as well as I could be for all the other SEs but I certainly didn't really know what to do with the lack of taste. I lost my appetite, which wasn't great before chemo, so had to keep setting reminders to eat. I was advised to steer clear of my favourite foods/drinks as it can put you off them -great advice imho - and I know now that it passes (well, last time it did and fingers crossed that it does this time). Now could be the time to start new foodstuffs - I found that I actually like kiwi fruit as my taste buds started coming back - dietary needs permitting of course. I hope you find something that works for you x ... View more

I'm sorry to hear that you has a horrible time at the wig place in London but glad you had a much better experience in Ware. I couldn't get to the one in Ware - impossible for me to get to and too expensive - so I went to Raoul's in Paddington and had a great experience, even came away with a couple of freebies, and found my perfect wig that was just the style I'd visualised before I went. I had a great time trying on a few different styles and it was done in a private room where I could take all the time I needed. I could've stayed all day if I hadn't had to leave for work! Although my hair is very patchy and the mess is awful, I haven't gone for the shave. It just seems like an unnecessary expense, which I can't afford anyway, and I don't know anyone with clippers/shaver who can do it for me even if I did want to go down that route. I know it helps some people feel that they gain some control back and that's great. I, however, don't feel that I need that, I just feel bad for the cleaners (especially at work) as I moult everywhere I go! I clear up what I can see but I know I'm missing quite a bit. Had a bit of a wobble this afternoon (1st one since initial diagnosis) and although I felt bad at the time, I now know it was much needed as it has clarified a few things I've been putting off. Sorry for long post. I hope everyone is feeling good or on the way to feeling better. Sam xx ... View more

A counsellor friend recommended the Headspace app so I downloaded it. Although it's set out well and I wouldn't have minded paying the small annual fee, I found the guy's punctuation really annoying and his voice grated on me. Needless to say, I wasn't relaxed at all. I wonder if there's a way of changing it. Or maybe I'll just try Insight Timer instead. Sam xx ... View more

Hi Sunflower, I'm glad that you felt a little better today and I hope it continues to ease. Advice I got that has helped me is: Try to drink as much fluid as you can - I know that's easier said than done when you're feeling like crap - and listen to your body, sleep when you need to & eat little and often if you can. Obviously if you're working or have a young family or dependants that can be difficult so accept help from your support network if you have one. I was surprised by some of the people who have become my support network and equally shocked by those who have distanced themselves from me. Maybe they'll reappear at some point but I'm not going to put my life on hold waiting for them to come to terms with my diagnosis. Life's too short. Sorry, that kinda turned into a little bit of a rant. ... View more

Hi Jude, so sorry that you are still suffering. I hope you find some anti-sickness meds that work for you. A blog is a great way of keeping track of your whole journey - I'm not tech-savvy enough to even attempt this right now especially with chemo brain - not only to show your chemo team but also so you can look back and say "wow, look how far I've come!" When I reread my long post, I didn't realise how many SEs I'd actually had but I still feel lucky that it wasn't worse. They're much easier to deal with when it's one at a time. Take care & I pray that you feel better soon. Gentle hugs, Sam xx ... View more

Hi Jude, I hope you feel better tomorrow. Maybe mention it to your chemo team as they may be able to change your anti-sickness meds. My head felt like a Mexican wave was going on in my brain and I felt a little dizzy after my 1st EC. The chemo nurses said it was the C so maybe the fuzziness you're feeling could be the same kind of thing? I keep a record of any SEs in a pocket diary just in case I need to report them to my chemo team (hence my in-depth and long-winded last post). ... View more

Hello Sue & Georgie and welcome to the club no-one wants to join. My 2nd chemo is on Friday 3rd and so far the SEs have been minimal. I have tnbc stage 3 with node involvement and I'm having neoadjuvant EC-T and my SEs to date are: Days 6-10 mild headaches but no temp - took paracetamol to ease pain & keep temp down. Days 8-13 taste buds went awol - eat anything but my fav foods little but often although my appetite was pretty much nonexistent. Days 11-13 mouth ulcers (2) - used medijel (savers own brand similar to Iglu gel which was recommended by bcn) also gargled salt water so not sure which helped more. Days 11-16 mild sore throat but no temp. Also had today briefly. Paracetamol eases a little. Days 15, 16 & 18 mild diarrhoea but no temp - took Imodium which helped a lot (fingers crossed). Rash at PICC line site noticed at dressing change on day 13 - chemo team thinks it may just be heat rash but put on an allergy-free dressing to see if that helps. Taking Clarityn which eases itching although it looks worse. Hair loss approx 50% thinner but my hair is thick and I had a lot of it so people haven't noticed. Started appearing on pillow around day 14 and has got steadily worse. Saturday (day 16) it was shedding all day and now I can't move without being covered. It's like I'm competing with my friend's cats! I can't quite bring myself to shave it off as it feels like I'll be admitting defeat. I know some people find it empowering or that they're taking some control back but I don't feel that. Maybe my feelings will change when it goes patchy. The worse thing is how sore my scalp is, it kinda feels like I'm being scalped (or how I'd imagine that feels like as obviously I've never actually been scalped!). Anyway, good luck with your first chemo on Thursday and I hope your treatments are kind to you both. Sam xx ... View more

Thank you ktk. I will have a look. Sam xx ... View more

Day 8 of the 1st cycle of EC, Sam's taste buds have been evicted (imagined BB voice style haha). It's weird for everything to taste the same, completely bland and actually tasteless, and for even the strongest flavours that usually would burn my face off to have no effect whatsoever. I hope it soon comes back as I'm losing my appetite because of this. I know it could be worse (eg mouth ulcers, sores, etc) so any suggestions would be very much appreciated. Sam xx ... View more

Thanks Shi. I'm doing fine, meds are working as they should be so SE are practically zero at the moment. 1st G-CSF injection tonight, scary but I will do it! I have a very high pain-threshold so I know I'll get through it. PICC line bled Saturday so went to A&E to get it changed but ECG showed a discrepancy and blood tests showed an abnormality so nearly had to spend the night. Luckily I had no other symptoms so they let me go home instead, phew! ... View more

1st of 3 EC went well today. They have given me 3 types of anti-sickness tablets & a pack of steroids to take over the next few days. Also I have the G-CSF injections to do for 5 days starting on Tuesday - terrifying thought for a major needle-phobe (okay, so that's not a real word) like me but I will try to do them myself and ask my GP if they will do it as a backup. I slightly wavy kind of head straight after the chemo (normal on C the nurses said) and on my way back to work I was sweating like there's no tomorrow! Probably a mixture of the heat & beginning of menopause but I'm going to monitor my temperature just in case. Also I'm very windy for the first time ever! Anyone else had that? I feel a little weary now but that's probably because I went straight to work afterwards and, although I tried to take it easy, I may have fallen into my old ways and worked at normal pace. This is going to take some time to change but hopefully I'll do it before my body has to make me. A lazy(ish) weekend is on the cards I think. Take it easy my fellow chemoers xx ... View more

Have a great weekend Warcol and good luck for Monday. Sam xx ... View more

Thank you cdc1811. Yes of course you can 🙂 that sounds great I will definitely take a look. Sam xx ... View more

PICC line went in Tuesday - which was painless at the time, a bit achy yesterday but now fine - now ready for my 1st EC tomorrow (I think!). Good luck to my fellow chemoers (this should be a word if it's not IMO), fingers crossed that it treats us all kindly xx ... View more

Thank you RoadRunner. Sam xx ... View more