Scalp cooling - hair loss

Hi OnNett  I had TC and used the cold cap - I was warned before i started I still might lose hair and that it could be uncomfortable and have that brain freeze for the duration of the treatment.  Happy to say I was able to tolerate it - I was given meds before to help me relax - yes it was cold for about the first 10 mins and then you just get used to it.  I always had a warm blanket wrapped around me - plugged in and constantly warm.  All this as a public patient - the nurses put the conditioner on my hair and fitted the cap - they were great.

I did lose a bit of hair after my first round - about 18 days in - it was distressing at the time - but didn't deter me from continuing with the cold cap.  I had a couple of days of hair loss - and then it stopped - it did thin out and as my hair was short and thin anyway it looked a bit patchy in places.   However the regrowth after chemo has been amazing -  I went through fuzzy hair stage and have curls now that I have never had in my life - and my hair is probably now the thickest its ever been.

So I would say if you have the option give it a go - if you find it too uncomfortable you can stop -   Good luck whatever you choose x

Thanks StarGirl, It's interesting following everyones experiences. They are all different and variable. There are no guarantees. I agree, if you can keep your hair you look more like your old self, and not so unwell. 

I used cold caps in 2015 for 18 weeks of paclitaxel and they worked really well. I lost quite a bit more hair than normal (like handfuls in the shower) but I have very thick hair so no one could really tell. Well, except for the fact that around the last week and following my eyebrows and eyelashes all fell out! It did add time to the treatment but I didn’t have anything better to do and I didn’t find it very uncomfortable. I did it so I would look the same to my young children and not look unwell to the outside world. Best of luck with it. I’d do it again in a heartbeat. I’d also add that while my initial regrowth looked quite grey and was a different texture, what came through after that was my normal hair. 

Dear OnNett, I started by just giving it a go. The cold didn't bother me. I got used to it quickly. No additional drugs, just for cold cap. I'm going to hang on in there. I've had 4 Fortnightly EC and 7 of the Paclitaxel. 5 to go. My hair is thinning a little. I've noticed it more over last 4-5 weeks. A few more hairs noticed in my comb. I've invested so much in this that I will continue to the end now. I bought a wig before Chemo, as I wanted to be organised as COVID came into full lockdown.
I haven't worn it .  I did have my hair cut shorter, as it is curly. I was advised that I wouldn't be able to blow dry and straightened, as I normally would do. So embraced my curls, for now.
Things to consider, how painful the cold is for you personally, how much extra time it adds to chemo sessions (1 1/2hrs), And probably expect some hair thinning. 
If you continue with Cold Cap, make sure cap fits as well as possible (I've been using an additional chin strap to pull the cap down on my crown) Also make sure your hair is VERY wet, especially if curly. Don't wash your hair too often,
I agree with Kazb. I haven't looked sick and people forget sometimes what I'm going through. I've been very 'lucky',  and have tolerated Chemo well. I have had numerous side effects, but all manageable, so far.
I'd post photos if I knew how. Good luck with your treatment. Take each day as it comes.

It didn't work well for me. The only areas that kept hair were the 'rim' of the cold cap where it fit very very tightly. It was clear after two infusions that it wasn't going to work (huge bald patches and huge shanks of hair falling out) so I stopped and shaved the rest off. It was a relief, and a whole lot easier. Best of luck, K xox

@OnNett my hair is very similar to kezmusc's, although shorter (just on shoulders).  I only had to have 12 weeks of Taxol, escaped the early AC rounds. likes @kezmusc asked, what part did you find distressing?  I was given meds before putting the cold cap on which reduced any discomfort.  My onc said that even if there is hairloss the cold cap would help with regrowth. ??  Its not for everyone, but for me it was important to  be able to keep my hair if i could.

Worked brilliantly for rme as well @OnNett. 4 x AC and 12 x Paclitaxel.   
1.  2wks after 1st chemo.  2. Last day of chemo 3. The shedded bits growing back curly.  4. The amount that actually shed which was surprising because it didn't look like that much.  


Which part do you find distressing?  There may be a work around to help you. 

@kazb, Do you have more (diff) rounds after taxol? Did you have a lot of hair to start with, What is your hair like normally, thick, thin? I have had one cycle (Of round one weekly for 12 weeks then round 2 AC fortnightly for 4) which I used the cap for but it was quite distressing for me, I’m trying to decide whether to persevere going forward.