Breast Cancer Now Forum

Julia, sounds like you're having a really raw time of it. My doc prescribed Corsodyl the moment my gums started getting sore and that's been amazing - so far managed to get away with one or two ulcers max and it seems to be keeping at bay what looks like the start of a fissure on my tongue. If you're not taking anything, it may be worth asking for some. Some say it discolours your teeth but I've not found that - especially if you water it down a bit and don't have it every day (like flossing, it's easy to forget or get lazy about!) Sending mutual sympathy for the fingers. My nail beds feel bruised but, when I banged a finger earlier, it felt exactly as you describe fingers being in ice.  A question for all - anyone else experiencing blisters under their toes? Thought I needed new shoes but apparently it's another weird and wonderful side effect of chemo! ... View more

Kim, what a relief it must be to be back home after the scare of getting covid on top of it all. It really is difficult to differentiate between the symptoms - I had to test myself last week but luckily it was just the filgastrim and round 4. I hope you're feeling a bit better and are on the mend. Sending you extra strength! ... View more

Hi all,  So sorry to hear of the various trials you've all been having. Although, selfishly, it makes me feel so much better as I certainly went down the rabbit hole over this past week! 4th (and final) round of EC on 23rd took it out of me completely, physically and emotionally. Everything seems to hurt from the veins down to my derriere. Christmas was a write off, and my birthday two weeks before (coming two days after the 3rd round), but I've been ok with that - took some explaining to a few people who didn't get it - but I personally felt super lucky to spend these occasions recovering from chemo and blasting the tumours rather than be on some waitlist for treatment worried sick the cancer is spreading. But it was the final round of the hard stuff and I am beginning to feel somewhat better now. Just need to build up the energy and resilience to face chemo part II next Thursday - 12 weekly rounds of Phesgo and Herceptin every 3 (I think). Been told that regime is a walk in the park compared to EC - not sure that's quite the case when I hear the tales of nerve ending issues - curious to find out and to see what I can do to try and get ahead of the new side effects! How I admire the courage of those who have braved the shave. I need to do that too but have been too emotional at the thought of it, despite thinking it would be ok when I first thought of it a few weeks ago. I lost so much after round 2 but I've hung on in the hope the loss would slow down - it has, but it is continuous and getting patchier each and every day. I'm down to about 10-20% and what's left doesn't even resemble my old hair - it's almost comical, like a bad toupee flopping in the wind. Also, it means the cold cap is almost unbearable, even if they put gauze on the bald bits like they did with me - stonking headache and felt really sick by the end of the 4th infusion. You have saved yourself that pain so, while I'm sure it was hard and emotional, it was definitely a good decision. Part of my reticence has also been seeing the sebaceous cyst I have on my head stare back at me in the mirror making me feel even uglier. I nearly got rid of it during the summer but didn't want a bald patch! Oh, had I known a BC diagnosis and chemo were just around the corner ... wonder how long after chemo you can have something like that removed? Maybe there will be a silver lining in this after all! I'm sending everyone the best of wishes for the New Year, and lots of strength for the challenges and milestones ahead. May the grey clouds be fleeting with little rays of sunshine amidst them to uplift our spirits as we keep trooping on. Kx  ... View more

@karzo Pleased to hear you’re laughing this week, and experimenting with styles, whether they were the look you were going for or not! My hairdresser is looking forward to trying out ideas from Pinterest as mine grows back. Could be a lot of fun and, just think, no haircut or bad hair day will ever seem as bad as the ones we are having right now - that has to be liberating longer term, doesn’t it! ... View more

@Jukat the lady in the chair next to me yesterday had shaved all of her lovely thick long white hair off and was very stoic about it - refused to go through either the ordeal of the cold cap (brace yourselves for round 3 if you’ve lost a lot on top - rather more bracing this time round even if I remembered the headband for the ears! - I tried to imagine myself in one of those ice baths by a sauna in Iceland, which is where I had hoped to spend a few days this winter!). Anyway, she’s going to turn it into a wig if it doesn’t grow back as luscious. And then said it’s really just vanity, probably more important when your young like me. Made me think all the way home about whether that’s true. People do tend to shrug it off a bit as temporary don’t they? I don’t think it’s just vanity. It’s like you said, it’s part of your femininity and how you express yourself. It doesn’t have to have been long, could have been short, but we take care of it, experiment with styles, dress it up, moan when it frizzes into a mess in the rain… It doesn’t change you as a person but it does play into confidence and how you feel.  Of course it will grow back and we’ll take it on the chin and have a giggle (hopefully) if it come out totally different in texture and colour until it works itself out but no one gets that unchosen and sudden loss -  you have to through it personally. People forget it goes alongside other anxieties you may have either because of other physical changes you’ve experienced or have yet to face which are also so inherent to being a woman. I’m trying not to think too much about what lays ahead, one step at a time, and stop trying to project future feelings until I know exactly what the permanent changes will be. In the meantime, just lovely to go through this with others who get it!  Where’s Wally! That made me chuckle. I feel I look the same with glasses and a bobble hat. Now have a lovely red woollen hat that sits closer to the head but not sure if it will disguise the chemo hat - find out tomorrow  as I’ve wrapped it up for my birthday tomorrow. I suspect a Russian style hat might have been better and great for the cold snaps of January and February instead - Christmas present to me sorted! ... View more

@KC57 - great to hear someone else’s body didn’t like the filgastrim! I’ve never experienced pain like it - it seemed to radiate out from the small of my back and went in waves and I could barely walk. I thought it was an adverse reaction after treating myself to a glass of wine until I read the chats on another forum (even though I’d been told alcohol in moderation was fine with the meds I’m on, I’ve tried to eliminate it entirely given I’m having EC every two weeks and need to stay as hydrated as possible). I started aching after the 6th injection round one but it was after the 7th and final one that the crippling pain really kicked in. The doc gave me codeine for it - they gave me two weeks’ worth of pills which had me worried how long the pain hangs around for - luckily just needed to take them for one day only. Started getting aches after the 5th injection in round 2 but taking painkillers as soon as the niggles started worked an absolute treat and kept the aches to a minimum and far less intense.  ... View more

Hi @Pigaletto, Thanks for the nail tips. I hadn’t really paid attention to those but bought cuticle oil yesterday and some nourishing polish. I’ll put a dark layer over that too. Never been good at putting it on - perhaps I’ll become an expert by the end of this!  I’m two rounds down on EC and doing the cold cap too. I lost quite a lot of hair after round 2 - it’s been an emotional week to say the least as I didn’t expect it to come out so quickly. I’ve taken to wearing a lovely hairnet these past few days to catch the hairs - was spending a lot of time with the lint roller and hoover. A friend who went through this not so long ago said to expect another big hair dump after round 3 - that’s today for me - it then may slow down. Reckon I lost at least 60% last week so psyching myself up for it all going or possibly braving the shave to avoid a patchy look. Now trying to focus on the positives. With each hair that falls, the stinging gets less and I always thought it looked quite a relaxing experience when men run those electric shavers over their bald heads, so maybe it won’t be traumatic after the initial shock. I also have an array of hats, super wide head bands and turbans (apparently all the cool kids are wearing those so perhaps people will just see a woman having a mid-life crisis trying to be young and fashionable rather than a chemo patient). Another tip I have for the cold cap - wear a hairband. Boots sell them in packs or two for a couple of quid and they’ll help stop your ears and forehead freezing. I was wondering why round 2 felt harder under the cap and then realised my error as I pulled the hairband out the bag when I got home! Not making that mistake again. Kate ... View more