I cold capped on Paclitaxel and kept most of my hair, thinned a bit with two small bald patches above my ears which were hidden by the rest of my hair.
On my last chemo a nurse said I do t know why you bother with cold capping on Paclitaxel its doesn’t work. I said this is my 12th and look at the amount of hair I still have! She didn’t apologise just walked away in a huff. I really think the negativity is more about the time on the ward and the. ‘extra’ work they have to do. My cold cap was mainly put on by a health care assistant not a chemo nurse. The time is planned in.
If you try it and it works great, if not you can say you tried.
I cold capped through my whole treatment and my hair started regrowing when I started docetaxel. I had a shitty haircut post chemo that was more traumatising than the loss I had during chemo…
I’m not impressed with a lot of the nurses and their attitudes toward cold capping. They’re unnecessarily negative and rude about it. I had some strongly worded feedback to my hospital at the end of my treatment about it and they said they would incorporate my feedback into their future briefings about cold capping.
@sassy3 is recommend a PICC line, just makes getting the bloods and having treatment so much easier (if no complications) especially if you’re difficult to cannulate / your veins could become more difficult as the chemo goes on which might take up more time on treatment days.
@erica I cold capped throughout - I lost a lot of hair after my EC cycles 2 and 3, I’d say probably about 75% if not more but I had a lottttt of hair before. I had a few bald patches but I never cut my hair and continued to cold cap and my hair actually grew about 1.5 inches during my last few cycles of docetaxel and I had no visible patches anymore. So I then had a haircut 2 weeks after finishing to even out the lengths with the new growth and now have a little pixie type cut. Absolutely your choice, if you want to try it and you can decide as you go whether you want to continue!
I had my drain out today following my surgery last week, finding it really difficult not to do anything that will over stretch my wound etc, I’m not a ‘relaxed’ person I always have to be doing something. It’s especially hard when my little girl runs at me or asks to be lifted up but I have my mum staying to protect me
@sooz1 pleased you are recovering well after your surgery. It must be hard with a little one not being able to pick them up. But you will be able to soon.
I remember having to ‘defend’ myself from a very excited dog, it wasn’t easy after surgery and I didn’t have a good side either (bilateral lumpectomy)
Photos as promised. My son, who is an excellent climber, took the photos. He said they were almost action shots and even managed not to laugh as he said it.
Hi everyone, first time posting on here although I have been reading and trying to keep up! I’m HER2+ and oestrogen positive. @sassy3 I am on the same chemo regime as you will be, I will be starting my 4th cycle on Friday. I would recommend a PICC as althoigh you have to get it flushed and dressed every week is easy for bloods and giving the chemo through, Ive had no issues with mine so far.
I’ve also had bad diarrhoea throughout and was wondering what drug was doing it as I will most likely have to carry on the phesgo after surgery. They said I wouldn’t lose weight in chemo but I’ve lost 6kg so far due to diarrhoea and loss of appetite etc.
Trying to focus on the current chemo but as it goes on getting nervous about surgery and what they might find as that depends whether i need more chemo after or just the phesgo. Its been great reading all your positive posts though and what you have all been up to even on the Kadclya.
Welcome, I’m quite new to this forum too, everyone is lovely! If you don’t mind me asking, have you cold capped or decided not to? How long do your chemo sessions last? It’s all unknown to me at the moment x
I don’t mind at all, i decided not to as I think it would have been too much for me to cope with. Intrestingly though I felt like they were trying to push for me to have cold cap which seems different to what others have experienced. But its your choice, you can always try it then if you decide its too much you don’t have to keep going.
The first cycle they did warn me it would be all day as they leave longer between each drug to check for reactions, unfortunately I had a reaction to carboplantin which was a bit scary but the team were on it so quick and were amazing. My next two cycles should have been roughly 9-3 but took longer due to having had to have repeat bloods. So hoping this next one I’ll be out around 3ish! I do have a lot of pre meds though due to the reaction so might take a bit longer. Reactions are rare so please try not to worry but if you do they are so good and will look after you x
Having to have bloods on the day also will extend the time. I had my bloods done by a district nurse 2 days before each round. They came to my house & took mine at my dining room table, so it was pretty easy & not time consuming but I don’t think every trust offers that. Some people have to go in to the hospital for their bloods in advance.
@sassy3 I did a range of stuff so my timings were quite different across the various chemo appointments. Like @under_the_sea says, the first appointment was longer due to longer gaps between each drug, for me it was also about 9-3.30 as I was also cold capping. For the second EC, it was about 45min to an hour shorter as although the gaps between drugs was a bit shorter, I was still cold capping. With cold capping you have the cap on for a while (can’t remember how long) before treatment and about 45 mins after. For the 3rd and 4th EC, I decided cold capping wasn’t for me after all, appointment started at 9 and finished about 1.30.
For Paclitaxel, the first couple were slightly slower but in general a much quicker appointment. I seem to remember being done within about 2 to 2.5 hours…but the antihistamines meant I was away with the fairies so I might be a bit out with the timings.
I thought it would seem like a long time but - chatting with my chemo buddies (who I still meet for cake and coffee),
reading,
crocheting (badly, but no-one can tell me it’s rubbish because I did it during chemo so that would be mean🤣),
having a cup of tea,
getting the next installment of gossip from the nurses,
snoozing
designing a board game
made it go really quickly.
I would also say be prepared for some slight delays. For example, if a nurse needs to attend to another patient first, if the chemo machine decides to sit and beep for a bit instead of actually administering chemo (they do that occassionally).
Sorry, that was a much longer answer than i thought it would be. Hope it helps though.
@sassy3 hi, that’s the exact same treatment I had. I had a cannula each time as my veins are good. It also meant I could shower and bath etc between appointments which was good to help with the aches from chemo.
I didn’t cold cap but lots of people on here have, maybe give it a try and see how you feel. Without cold capping my sessions were 3 hours. The cannula didn’t mean it took longer than a picc line as they go in super quick (if your veins are good, stay hydrated) I think cold capping adds about another 1.5 hours I think it’s 30 minutes before and 1 hour after or the other way around. Have a look at the Paxman website as it explains the before and after times on there
Keep us up to date with how it all goes. It feels like a lot right now sure but blink and all your treatment will be finished xx
Hi @sassy3. I’ve only ever had a canula in various veins around my hand and wrist. If your veins are ‘good’ as in visible and you never have trouble giving blood or having blood tests then its great because between treatment its just a bruise for a week. I was glad as i didn’t want a constant reminder i was a patient. But thats just me. If you don’t cope with needles well than maybe a picc line is better for you.
And I take a friend with me each time. They hold my hand for the canula and phesgo injection and chat away to distract me. Its nice to have 3 hours of natter time with tea and cake and be driven home.
but I have my mum staying to protect me 
