Hi all I start chemo tomorrow
So joined June but also will be here. I’m cold capping as well. Nerves are definitely kicking in now so trying to keep busy today xx
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All the best for tomorrow @linz1314!
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Hiya
I’m on 3 of EC and then 3 of Doctaxol which are pretty much the harshest ones you can do . I’m one of those who used to wash her hair every other day and straighten it as it’s naturally curly but not the nice kind . In this hot weather I’ve been so struggling with this in myself and how I feel and it’s making me very teary . I know it’s 6 and I can get through it. I have worked out my dates if all goes to plan ( and I know it often doesn’t) so meant to have last one just after Oct half term ( work in education so my life revolves around the academic calendar day ) we had a big family holiday planned for the end of Aug -11 of us . Obv I can’t go but I want to keep things as normal as they can for my husband and daughter but am scared of the after effects and he isn’t here . I’ll have support but it’s just the fear really . I don’t want to stop him going either as it’s also for my daughter….
Yes I havnt opened mine as apparently I have my first infusion on the 9th but get the pic line in on the second one on the 39th . I got one from Amazon which was a waterproof one and a nicer day one from Etsy pastelbrightdesigns
Good luck @linz1314 please let us know how you get on
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Hi July Starters
Popping over from the Feb starter page as I’ve just finished my Chemo & I wanted to donate the Porto & Bello accessible clothing I used (UK12) thought this group would be a good place to start
I would just need a small amount to cover postage (evri is likely a couple of quid)
I had 3 x EC and 3 x Docetaxel so the items haven’t been worn that much & in good condition
Please DM If interested & I can send details
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Hi guys have done my first ec chemo yesterday and cold capped. All went ok worst part is the first ten mins of cold cap . Otherwise I have just been a bit tired. Please feel
Free to
Ask any questions you have xx
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So glad you made it through the first one . Mines next Thursday in 30 degree heat so I might welcome the cold cap ! Keep us posted on your next few days x
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Glad to hear you’re doing ok, and keep us updated. My first is also next Thursday, but starting on paclitaxil weekly and carboplatim/pembro three weekly for 12 weeks, before moving onto the EC.
Have heard the EC is worse for side effects, so hoping ill be broken in gently over the long summer holidays!
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Hi,
Just wanted to introduce myself.
I was diagnosed in May with Her2+, ER+ and PR- I started chemo yesterday - Docetaxel, Carboplatin - 6 cycles and Phesgo for 18 cycles.
I cold capped yesterday - as some other have said the first 15 minutes were hard but was manageable after that!
I felt a bit spaced out today but I think the steroids are working - I managed a 30 minute walk although much slower than my normal walks…
Looking forward to getting to know you all 
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Hi everyone,
I’ve been quiet a few days as I had my first TC (docetaxel & cyclophosphamide) infusion last Friday. I had a reaction to the docetaxel and they had to stop it, give me some other meds to stop the reaction, and then restart it slowly. All was okay after that. It meant I was there much longer than planned and had the cold cap on the whole time. Saturday was uneventful, but Sunday I woke up with a rash so had to ring our hospital’s cancer helpline. I was brought in for assessment and monitoring, only to be sent home several hours later and told that at least I know what to expect next time (SIGH). It was a long day.
If I am being honest, it has been horrible since with aches and pains, fatigue, mouth soreness, a feeling of doom and gloom. Also, I’ve never quite experienced sensitivity like this in terms of just having a ring on my finger irritates me and have to have extremely soft clothing on. The hypersensitivity is affecting my brain as well as I’ve been unable to do anything except lie in a dark room for hours at a time. All of this is so unlike me!
I am hoping my oncologist can tweak something for next time and that things start to normalise soon. I took my first filgrastim jab yesterday and that seems okay so far. Saying that, I am up at 3 AM just now so not sure what it is xx
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@perfectmiss - apologies for the delay in reply. I’ve been flat out since my first cycle infusion last week.
I saw a lady with curly hair cold capping in my chemo unit and she was on her last one and had not lost much at all. Another one I spoke to also had curly hair and said she only had one small bald spot that she could pin hair back on and no one could ever tell - so it might go in your favour xx
Can you do something special for you while your family is away on holiday? That might help a bit.
Are you working through chemo?
Hi thanks Jennifer I guess everyone is different. No I’m signed off till November having been off since May for the operation. August is a really quiet month for us so by the time Sept comes round I’d be half way through . I just don’t know how I’m going to feel side effects wise and looks wise to return to work . Do you have more treatment s after chemo ?
@perfectmiss - good that you are signed off. I have read and heard so many stories about how people work through their chemo, but as you say, everyone is different and one does not know how their body will react until they go through it.
Yes, I have more treatments ahead. Re-excision surgery after chemo as surgeon did not get clear margins, radiotherapy, Letrozole and Abemaciclib. Good times.
You guys are so brave in that you are finding humour in it all . I’m sure I’ll be fine once it starts next Thursday but for now it’s not a good space . One light today , I have gone 4 days without washing my hair in preparation so will do today . Oh the small joys !
@jenniferguess
IT is possible that the rash was a delayed reaction. may I suggest taking photos of said rash to show your oncologist and if you have not an appointment before your next round that you call their secretary and ask if you can see them because of initial and then possible delayed reaction.
Your oncologist is best placed to put together drugs that can help manage such things and tbh I found once an oncologist knows your a bit more reactive than most they will often keep a much closer eye on how you are doing. IF need be they can change the time and dosage of the drugs you have, provide antihistimines and similar to help manage delayed reactions and if need be look at your chemo drugs and recommend an alternative option that does not contain whatever if might be behind a continuing reaction.
IT is also not unusual for chemo drugs to leave you with skin that is more sensitive to ordinary things than Ìt would be normally. IF you are prone to excema of similar before chemo expect your skin to be come rather reactive. Àgain this is something your oncologist can help to manage and take it from me it does turn your world into a nicer place.
for now swap to 100% cotton bedding and clothing, remove anything like that ring which irritates at all and swap for liquid based none bio laundry detergents as the liquids leave far less irritating residue than the powders. Watch out for reactions to sticky tapes in hospital as skin that has gone reactive can become extremely reactive and let the staff know if you suspect this to be the case so they can have plasters, dressings etc to hand that are more suitable before they start blood tests or site cannulas etc.
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@wibbles - thank you so much for these suggestions. Yes, I have an appointment with the oncologist the day before my next infusion so will definitely detail everything to her.
I did not think, however, to actually take photos, so thank you for that great idea. The reaction has largely subsided now so I will have to remember to do it next time. I feel like I will need more support on days 1-5 in the way of antihistamines and/or steroids..no idea but something has to give!
I have some really lovely satin PJs I am now living in and a silk pillowcase. The sheets are a great idea so need to have a look. My spending £ on this cancer is starting to get out of control though 
Hi @cfc_jc and welcome to the club no-one wants to join.
I too was diagnosed in May and should start on Monday next with Docetaxel/Carboplatin and Phesgo plus Zolendronic acid, but have not yet seen a treatment plan.
Hope you are getting on OK 
Hi @anyakuro we look to be in a similar boat…
Feeling ok today but the steroids have now halved so will see how I get on. Have managed a couple of walks today and back to the hospital to have my dressing on my port changed tomorrow
Been looking at wraps and caps for my head - it’s a minefield!
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Hiya - think we all go through melt down particularly early on when there’s so much info to take in then waiting for results. I’m just about to go in for my first EC chemo and I too am giving cold capping a go. You will get through it and come out a survivor. Good luck.
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Hi how is everyone doing today ? I went for my blood test yesterday and popped into the mc millan centre there . I signed up for counselling as I think it might help and the nurse there was lovely . She was trying to get me to frame it as a good result for me with the chemo being used as a mop up . I’m really going to try and focus on that more . I also managed to visit the cancer suite and spoke to the nurses there who reassured me about cold capping in that they measure the head etc . Sounds like they are the experts… Hope those who have starter are managing . It would be good to hear your experiences x
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