@bluehourd just checking in to see how you are doing after yesterday, hope all went smoothly and your not feeling too many side effects yet.
My hair seems to be falling out all over the place like you even with the cold capping , I’m wondering how much will be left after my second dose on the 31st - looking at the paxman website it suggests it’s the cyclophosphamide which is causing this , I know your on doxetaxal like me but are you on cyclophosphamide too?
Hi there, thank you for checking in! I’m doing ok thanks, I’ve now had two doses of paclitaxel and 1 dose of Immunotherapy and sonfar I’ve only had very minimal queasiness. No hair loss so far, but I’m sure that’s on the way. I’ve already had my wig fitting, and am expecting that to come in early in the new year. The biggest side effect so far has been fatigue
I had a wonderful christmas with my kids and grandkids, I guess you always enjoy/feel things more intensely when you know it may be the last time.
Morning! Yeah I’m on cyclophosphamide and docetaxel. most of the hair on the top fell out around day 19 (Christmas day, lucky me!) I have a 2inch ring of hair at the front and back … makes me think the cold cap wasn’t fitted right as it worked in some places not others. The nurse said she thought it was because my hair was thick, so only worked around the edges? Who knows. Anyway, now I’m the master of the combover, was comparing baldness w my uncle at Christmas .
It’s enough to have a bit of hair under a hat or pin up with a headband. So I’m cracking on w the cold capping, and will go collect my wig once they reopen after the holidays.
I had my second dose on Friday, went fine okay and not feeling too bad yet. Steroid dip tomorrow though, and have to start these Filagstrim shots today
Glad to hear the side effects have been minimal let’s hope they continue , mine were not as bad as I expected I think in my head i had made it so much worse.
It’s good you enjoyed Xmas with your family and with all the treatment available these days I would hope there are many more to come.
Nice to see you have a sense of humour over the hair thing, I think that’s all that’s getting me through at the moment trying to see the funny side of things. I have quite got the ring at the front or back yet but my scalp is sore at the very top and the whole way across the top my hair is getting thinner and thinner. I don’t have thick hair as such but lots of very fine hair so wonder if the same is happening to me as the cold didn’t get to those bits as much. It’s all a mystery but I will continue with the cold capping too.
2 down 2 to go for you , halfway another one ticked off ! Glad it went okay and your feeling ok, the bloody injections though that’s the one bit im not looking forward to again, the aching is just I’m doing the preload of ibuprofen and paracetamol this time to see how that helps - good luck and take it easy x
Thank you! Great tips. That’s really helpful. I am going to try the cold cap. Nobody at the hospital has mentioned cold mits so I’ll ask them about that and the prescription items when I go for my blood test tomorrow.
Thanks @mumto2 . Had 2nd dose of paclitaxel and carboplatin on 27th, fatigue the most noticeable ramping up. Mouth ulcer starting to appear, no loss of hair yet, not cold capping, wig on order.
Insomnia is the pits though, waking up every hour.
Hello!
I have been taking a book to read, something easy to dip in and out of as I have ended up chatting with the other patients each time so didn’t read too much. Some others in the ward have airpods to listen to music too. I took a snack the first time but didn’t the second as there was a constant stream of cuppas and we were even brought lunch (choice of sandwiches, soup, crisps and yoghurt). It is weird but I find the actual chemo session a not unpleasant experience, the staff are all so lovely and kind so try not to worry about it.
Depending upon your chemo regime you may need to be prepared for nausea and funny tastes, lots of ginger based food and drinks help. Also drinks with a ‘sharp’ taste.
Hope it all goes well x
Oh that’s rubbish sleep deprivation is the worst , I’ve been relatively lucky on that front , the fatigue however some days I feel ( and probably look ) a 102.
I’ve got difflam oral rinse on prescription my nurse said rinse with that 4 times a day and luckily I haven’t had any mouth ulcers - god I hate tempting fate ……
Oh forgot take paracetamol about an hour before your cold capping helps with the initial brain freeze , I did it find it too bad, lack of brain ?
Not all hospitals do the mitts and boots , few on here have bought Suzzipads so may be worth checking beforehand with your BCN as to whether they provide and if your chemo drugs can cause neuropathy.
Happy New Year everyone. Hope 2025 gets everyone through the treatment and feeling 100%!
Had my first session of 4xEC yesterday (due to be followed by 4x paclitaxel). Wore the cold cap but didn’t need mitts for EC. They suggested bring a swimming cap for next cold cap session as apparently it helps its effectiveness.
I have written out a list of all the many meds I have to take. I feel like I have a full pharmacy! Even with them all I have some nausea so trying to sip water regularly.
Starting injections tomorrow. Not looking forward to that. Going to ask my diabetic sister for advice. All tips welcome.
I’ve just had my first session of EC today and am now back home feeling tired, mild headache, mild nausea and like I can occasionally feel random heart beats which is mildly unpleasant but I’m OK otherwise. I don’t know whether to phone and ask about really mild signs…
I did use the Suzzipads too but more as practice for the Paclitaxel that is coming next. What I realised today is that I need to wear thin gloves inside the hands and fairly thick socks inside the feet things or it is really uncomfortable. However, I think my circulation to my finger tips and toes shuts down a bit when they get cold so I think I’m just really sensitive. It certainly stopped me thinking about my head. I actually had to ask the nurse whether it was actually working as it does go numb and I even thought it felt warm!
I would say watch the Paxman videos before you do it just to make sure they are really fitting it properly.
Happy New Year all – hope you’re doing okay! Weather has been horrible but just think my fellow December chemo starters, we’ll be done by spring time. Atleast I can wear hats on my combover head and it doesn’t look out of place . I need to go get a wig off amazon; I’ve ordered one from a proper wig shop but they’ve been closed since 20 Dec…
I’ve got through round 2/4 now on TC. Second round was similar to the first and not TOO bad, just very tired on Day 4 and need to stay on top of ibuprophen with the Filstragim shots.
Hi everyone, just had the 2nd of 4 EC. It was meant to be every 2 wks but delayed due to Xmas. It went ok, nurse was great and I felt she really knew what she was doing with cold cap, I didn’t have the same confidence with first treatment. Have been shedding a lot of hair the last 3 days, started around day 17 or 18). Feeling really down about it and now thinking perhaps the cold cap wasn’t fitted as well during the first one so maybe it didn’t really work then, I definitely felt the cold on my scalp more this time around and am kicking myself that I didn’t say something on first one. It’s just awful seeing so much hair coming out, especially when I wash it.
Sorry for the moany pity party.
Hope you’re all doing well and if you have any spare positivity please send it my way xxx
suddy2026 sending some positivity your way, ladies who coldcapped during chemo back on Oct17 thread who went through chemo same time as me did get a bit of hair loss during coldcapping but carried on with it, they did thin a bit but once chemo finished their hair came back well and soon filled it back out keep hope Shi xx
Hi Everyone,
Just had 3/12 of weekly Taxol. Decided not to cold cap, have had a short hair cut before chemo as a stepping stone to no hair.
Day 16 and noticing hair dropping out in small clumps, nothing noticeable yet. Thinking I need to get the hair cut right back now, no pain on scalp folicles yet. Is anyone else not coldcapping and loosing hair? I need to research best products to put on scalp next.
I hope my fellow Dec chemo starters are keeping well and on track with treatment
I’m on day 2 after my first EC and have been awake every hour and a half and feel tired, headachy and slightly nauseous (despite all the anti-sickness meds). I feel this will get worse before it gets better so any advice gratefully received.
Had my second round of TC on NYE and have felt pretty ropey last couple of days, mainly the aching and pains all over which the injection filgastrim makes worse . Spoken to the hotline today as I have been taking both paracetamol and ibuprofen and was still in pain so onto cocodamol now see how that goes.
To those with the cold capping I have lost quite a lot of my hair and I think mine was on correctly both times so I think it’s just a luck thing - 25% will keep their hair but the positive is that even if it goes at first that it comes back quicker so I will persevere. Off wig shopping next week so will see how I get on in the meantime I’ve got a couple of turban kind of hats to wear.
Hi Welsh warrior , I would be ringing your hotline if the meds are not keeping it under control, they can give you other things if the ones you have are not working , everyone is different x
The nausea did settle eventually after the morning load of metoclopramide, aprepitant and dexamethasone to a background level thankfully. I did suffer quite a lot of morning sickness and sickness to some antibiotics so I think I just do nausea a bit too well. I managed to eat alright today.
I also did the cold capping and am wondering whether to buy a load of hats/turbans in preparation or wait and see. I spent ages looking at some today online and now they are continually popping up on my Facebook feed (not entirely unhelpfully!)
Anyone bought some nice sleeping hats or headwear they would recommend. I like soft feelings things on my skin.
Fingers crossed for a better night’s sleep tonight. X
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I’m doing the preload of ibuprofen and paracetamol this time to see how that helps - good luck and take it easy x
) a 102.
. I need to go get a wig off amazon; I’ve ordered one from a proper wig shop but they’ve been closed since 20 Dec…
xxx
