Hi. I go to the triple negative breast cancer at Maggie’s, 3rd Friday of the month. I find it really helpful. There is also a place I’ve found in Bury which I’m finding useful anyone can use it that’s been affected by cancer. It’s called Bury cancer support services. Worth looking up. Hope you get a different tablet that works for you. Good luck. X
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That’s the one I’m hoping to get to when I’m better as I’m triple negative as well. Hopefully I’ll get to meet you at the next one x
Ancient & brave do a pretty good one which has magnesium in it as well. I thought I’d cracked it with Artah’s one which is lovely but then realised it had maca root added which is a no go during chemo. Oshun is super simple ingredients but a bit more to the salt side. I also neck coconut water like there’s no tomorrow-rebel kitchen is the cleanest I’ve found x
Hopefully see you next month then. It’s on the 17th. X
Not to get ahead of myself because chemo isn’t done with me yet but can I please just get my hair back now?! I think it’s because the summer is coming & with the hot sweats multiple times a day my cashmere beany has felt a bit hideous during this last few nice days of weather! I have had a patchy bit of regrowth through taxol after losing it all during round 1 of EC & my eyebrows & lashes disappeared during my final EC round but this really is a long old downer for any vanity we have left!
How is everyone else doing with growing bits like hair & nails? My nails seem to be doing ok (shhhh don’t tell chemo!) with daily oiling but I’m nervous that could still change.
@whataloadof I know this wouldn’t be for everyone, but I have jumped straight to ‘don’t give a monkeys’ territory and I just whip my beanie off at will. I secretly rather like the shock factor but also want our appearance to be normalised. I remember feeling really sensitive about this at the start, but now I have released my inner Punk. As it gets hotter, I plan to sweat for no-one. Of course this means lashings of sun screen! xx
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@jaygo You are marvellous & I love the punk attitude! I embraced the hair loss by shaving it all off before chemo & no cold capping without hesitation but I think it’s that last drag towards the end of chemo getting to me now!
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I know, it is so hard to be so near yet so far. I hear you and you have my total empathy. I’m enjoying the mini break before it all kicks off again for me. xxx
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@jaygo enjoy every moment of respite x
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I’m so impatient for my hair to start growing back too, and for my nails to grow out their red/brown marks (and stop hurting!). I know it’s early days though… I painted them last night to hide the marks and it felt so good to give them a change of look! Still using Polybalm twice a day and have been since the end of December when I found out about chemo. My toenails have survived amazingly well (so far…I’m aware they may have a post chemo downturn!)!
As for my head hair, I have the shortest random spiky bits but they’re the ones that have clung on throughout. Waiting to see when my head wakes up…I’m guessing in a month or so maybe?! x
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@anncuk Come on hairs!!!
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Hi everyone!
I hope everyone is carrying on well with the chemo cycles. I think some of you must be finishing up this week?
I can’t really believe I’m nearly at the end now - what a slog! I’ve got 1 TCHP left to go in 2 weeks, I’m so relieved to have gotten through 5 now but just need to see the finish line now.
I see some of you got a dose reduction, I also got reduced by 15% because I’ve been getting tinnitus. I’m really hopeful it’s only temporary as it’s driving me crazy now. However, I think side effects might be a little more manageable - or I’m just used to feeling shit.
I also just wanted to say that my cold cap experience has been really positive and I still don’t have any noticeable bald spots yet, it’s definitely thinner all over and I can’t wait for regrowth. I just wanted to give some hope for any future cold cap users that it is possible to keep most of your hair!
Next up for me is radiotherapy and I’ve already got my sessions planned so I’m starting on 5th May for 19 sessions. For the hormone positive ladies has anyone been told when they’ll be starting medication yet?
Sending lots of love!
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I’m scheduled to have my last infusion on Thursday, although I still don’t have a time slot and probably won’t until the afternoon before!
Feeling a bit fed up though, everyone thinks the worst is nearly over but I still haven’t even discussed surgery yet. That’s happening on Friday. Plus I won’t know how well this chemo has worked and what my next treatment steps are for weeks until I get the surgery pathology report. I was expecting to continue with Phesgo but if there’s still evidence of disease then it will be a “light” chemo. I guess it’s going back into scan anxiety like the early days. What if it is actually in my lymph nodes. What if it’s actually spread. They missed my lump a year before so what if they can’t see it when it returns. Aghhh. Foot stamp. It’s not fair.
Have no idea when I will fit a holiday in before my daughter goes to uni in September. Both daughters have exams coming too. It’s all just too much x
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The waiting is the worst part but you’ve done so well getting through chemo, the rest will be a breeze.
I had surgery first and I was pretty stressed about it but honestly it was so much easier than I thought it would be. The surgeon was great and my recovery was really straightforward.
I’ve sat next to a few women getting kadkyla chemo at my sessions and they’ve said it is nothing like the normal chemo so even if you do need more you’ll have gotten through the worst. One woman was fully back to work, hair growing back and said she felt almost back to normal.
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Thank you, that’s really comforting xx
@evicting_00_squatter hi there! If you do need Kadcyla, we have a thread going over in Targeted Therapies called Kadcyla 2026 for those of us starting this year x
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Thank you. I did have a little peek over there yesterday. Xx
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If you do need it, there’s lots of reassurance from people who are mid-way or have completed it. It is really daunting, but I’m holding on to those experiences (I start on Friday) x
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Honestly how wonderful to hear cold capping worked for you-that’s a brilliant outcome & I’m really pleased for you.
Think you’ve hit the nail on the head-so used to feeling like shit now that even a marginally ok day seems like the greatest thing ever!
On hormone treatment-letrozole for me-I think they’re planning on getting me going as soon as I start radio. Not a moment to take a breath basically!
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Thursday! Focus on that my lovely-get it done then look to the next bit.
I promise you surgery was not as challenging as I had expected and you will take it in your stride. But my goodness it’s all so much when you put it all together.
Tell them you really need a holiday with your daughters & ask them to try & help you agree a time you can get away that treatment can work around. I think they will try to help you if at all possible. From memory you have some big birthdays to belatedly celebrate too? Xx
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