The booklet they gave me said the port will need flushing every 3 months of it has not been used @warmfuzzies but as most treatments are more frequent it doesn’t usually need flushing between treatments.
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Hope i get some help with my dilemma, I’m cold capping but on DAY 15 My hair started to shred a lot. Had my 2nd EC yesterday still the same, hair is still falling a lot.
Does it stop for awhile? Or will all my hair just falls.
My oncologist still encourage me to cold cap and when she saw she noticed the thinning of my hair.
Yesterday the lovely chemo nurse also encourage me to continue cold capping.
Can you advice on any hair piece
That you used at home so that hair is just in one place, I try to look an Amazon and so many choices that I cannot decide.
Chemo brain here.
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Thanks @jaa2019 good to know! I’ll ask about the cream but will also see what they do with my blood test today. Maybe will just have to grin and bear it
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@wren8 please do let us know about you’re experience. Goodluck on it.
But I bet it won’t be that painful as when they were trying to insert the port. I could still remember all the steps that happened.
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@wren8 that sounds like another good reason to get the port. Fewer trips to get it flushed, or even not at all.
Im still waiting for all my appointments for chemo set up to come through, its supposed to start the week after next. The chemo anxiety is real 
Ive messaged the BCN at the hospital to see if they can signpost me to getting a port instead of a PICC because if it needs doing a week before then that would mean early next week!
Thanks for all your help 
Kath xx
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Just did EC 2 last week on Tuesday
Shed/thinning started the weekend before. Little more since but has paused at moment
Still have plenty and don’t need a cover (yet) but it is thinner
Bought a wig through Trust, plus a cheap one from Amazon and a cheap one from Light in the Box to hopefully give me a few choices when I do need one
Am going to continue cold capping for 3rd EC and then three Docetaxal - don’t have to keep cap on as long after the latter thankfully as it’s 1.5 hours after your EC dose you have to sit with it on as you’ll know
I figure may lose it all or might be lucky to keep some - so nothing to lose by trying
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Welcome @wren8 
I also have TNBC, I have started my 2nd cycle yesterday (4th session overall). I also have them weekly but I started with Pembro + Carboplatin + Paclitaxel every 3 weeks and Paclitaxel weekly. It would be interesting to know what’s your experience with EC. I’ll do 4 cycles of it in May but it’ll be once per 3 weeks.
Yesterday my oncologist suggested to skip pembro this time as my liver values went up 
she said it was ok since pembro stays in the body for a long time but I really hope I can continue soon.
Will you cold cap? I’m not and already booked a hair shaving appointment for tomorrow…it went quite fast with hair, took 3 weeks overall to lose around half of it.
Good luck to you and stay strong! 
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Hi @hasnae87 I’m on the samw chemo as you and the injection, I have my second cycle tomorrow. Like you I was very nervous beforehand but the actual day went ok and I think the fear of the unknown is worse then the day itself. Its quite a long day though so bring something to do, some snacks you enjoy and drink plenty of water.
The injection can be a bit stingy for the first minute or so then for a minute or so after. I had a bit if a reaction to carboplantin (not sure if that spelt right!) But they were on it and sorted it out straight away, they are going to give me extra drugs beforehand tomorrow so hopefully I will manage it all this time.
Feel free to message me if you would like to chat about it. Takw care xx
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Didn’t have much luck with the port for my blood today. They had to handle it and press on and around it to find it which was painful and then managed to get the needle in and flush it but no blood could be taken. They had to stop and just get it out of my arm. Not looking forward to trying again tomorrow for the treatment. Not sure what the issue was but I think they just stopped as I well feeling lightheaded from everything. I’ll definitely ask them if they can give me anything before they stab it again tomorrow. The paracetamol did not cut it. I would definitely recommend a bit more healing time for anyone getting one if you have the option as even though they can be used straight away the pain at least for me was not ok after the 3 days.
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Thanks @chita. Nice to meet a tnbc pal here. I’m still a bit confused on the exact order of my treatments I know it’s 12x weekly then another 12 weeks after being every 3rd week but not sure exactly which drugs when. But I suspect we are on the same, I think the EC may be coming after the first 4 cycles in the 2nd batch of 4 cycles. Will have to check my paperwork. Only had one meeting with the oncologist and it was a lot to take in.
Sorry to hear about your liver and the Pembro. Hopefully you get some good results too and can continue. I am a little nervous about that one as I have read about some worrying side effects.
Not going to bother with the cold cap. Oncologist said I was really unlikely to keep my hair even using it so thought I won’t bother. As it extends the time you’re in for treatments too I’d rather just try and rock a bald head and get out of there quicker. I have some minor worries about the hair never coming back but apparently that is rare- not sure but that is what I’ve read. I also just want to be as comfortable as I can during the treatment as I am already a nervous patient and having the cold cap seems like such a faff. I do love my hair but as it will go I am ok with it. I will probably shave it off after my first treatment before it starts going. Have ordered some hair tube buff things and turbans. Not got a wig yet though but some good suggestions on here I will check out.
Good luck to you too. So good that you are already on your second cycle. Crossing my fingers these weeks fly by.
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Hi @wren8 another TNBC, I had WLE/SNLB in Jan all clear, I started first cycle EC, through canula last Thursday, so far feeling good, mine is 3 x EC every 21 days, then Pac x 9 weekly + carbo x 3.
Had a bit of of bump this morning ladies, brushed my hair and notised some fell out, a bit miffed that it has started so soon, anyone else shredding this early ?
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@wren8 am so sorry that they where not able to draw blood from it. Tomorrow morning say it straight away to your chemo nurse that paracetamol is not giving you any relief. They gave me codeine together with the anti sickness drugs, but they still needed a doctor to prescribe it to me and I’ve asked to take home more codeine.
It was also the same for me when the nurse tried to draw the blood it did not come straight away, she asked me to cough few times and raise my arms then she tried slowly blood came out then she flush it more until the blood came back out. I was warned anyways that the needle might move especially that I slept with the night before so when they draw the blood it might not come out straight away.
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It’s definitely a lot to take in…I think I learned about the drugs I’m getting only after the 2nd or 3rd session. You’ll digest it with time
My oncologist said the same, that I wouldn’t save any hair so no point struggling with the cold cap. That’s a great idea to shave early! Tbh I regret I didn’t do it, just made a pixie haircut. By today I can already see the scul through my hair and it feels horrible, I really want to shave it now. Though not sure how I’ll feel tomorrow when I see myself bald 
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Hi @cruising my hair started to come out at aroind day 10, i was warned on my chemo that it would mostly be gone on my first cycle. I got my wife to shave it last sunday (just after 2 weeks after chemo) as it had gone all patchy and was getting to me, strangly feel a bit better now it has been shaved but takes some getting used to! xx
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Well today I woke up with such a red face, phoned the 24 hr line and apparently it’s a normal reaction to the injections. I literally look v sunburnt! Just wanted to share in case anyone else gets it.
I had my first EC on Tuesday and no sickness but tiredness is v real. I’ve hardly made it out of bed until today x
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Hi @jaa2019 Well done for cold capping, isn’t not easy but it can offer some amazing results if you are able to continue. I had 12 weekly Paclitaxel and kept most of my hair with two small patches above the ears.
For advice please look at Paxman’sown website or Cancer Hair care charity or book a course with Look Good Feel Better charity.
Your oncology unit should have advised you on local wig stores you can go to. There are options for wigs or hairpieces/ hair topper depending on your need. Lots of info on YouTube if you search but a wig fitter would be better to advise for a hairpiece/topper.
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How did you find the 12 weekly pax? I’m starting that after 3 x ecs x
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It wasn’t easy but it was doable. I was very fatigued, lots of aches and pains, thrush, UTI with an upset stomach (make sure your team prescribed Loperamide/ Imodium). As time went on the side effects increased and I had less ‘good days’ usually only 2 and one of them was back in the chair for next infusion. I started on a reduced dose due to allergies, heart issue and family history. I had an allergic reaction week 3 so was then given premeds of steroids, antihistamines and anti acids. Dose reduced again. Week 8 had an infection/temperature, possible UTI, had antibiotics sent home then 4 days later temperature back up and spent 6 nights in hospital.
Don’t want to scare you, it’s sounds worse than it was. Some people have low neutrophils but mine stayed ok. Taking your temperature regularly is very important especially if you take paracetamol as it can mask infections.
Depending on your age, health before diagnosis and family history can alter how we all react to chemo whichever drug. I read on here all the time it’s the ‘kinder’ ‘gentler’ chemo but it’s till chemo and I had my issues but they were swiftly dealt with by my team. I didn’t work as I was in education and it was too risky because of infections. I was too fatigued to even concentrate some days but I’ve read of others who have work most days, maybe only having two days off work a week.
I hope it works ok for you.
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Thank you. Wow you had a rough ride on it. I was hoping it’ll be easier out of the two. I’m 49 and pretty fit. I’m finding EC hard, mainly the tiredness not sickness. I’m on day 4. Today was the first day I had a shower and got changed. Hoping a little bit more energy may come my way over the next few days x
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I was 54 and relatively fit.
You are doing amazing. Be kind to yourself. Do what you can when you can. No guilt. You’re having chemotherapy, it hits the good and bad cells.
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