It's Megan here from Macmillan's Online Community team. I hope you don;' mind me starting a discussion amongst your conversations, I just wanted to share a link to one of our recent blogs which you may find useful to read.
The 'Sharing scalp cooling experiences' blog includes resources, support information and highlighting other member's experiences which have been posted across the different community groups.
Hopefully by reading this it can provide some support and if you'd like to share your own experience with others or ask questions in the comment box at the end of the blog. You can also start a discussion in this Community group or another group you're a member of.
If you have any questions for the Online Community team, please don't hesitate to reach out to us by emailing Community@macmillan.org.uk or by sending a private message to the moderator account.
Macmillan's Online Community team
I am trying scalp cooling and thought I would share my experiences in case it may help someone. My chemo is Placlitaxol and carboplatin and I am doing 4 cycles of 21 days. I had my 2nd chemo yesterday so I am half way through.
To me the possibility of losing my hair is hard to deal with and I don't want to look ill if I don't have to. Its got to be a personal decision and I admire people that feel brave enough to shave. I am not one of those people.
Scalp cooling does make the day longer. Have to get there about 30-60 minutes to get set up and on my regime there is a 90 minutes follow up time after the chemo stops. However I am in for the day anyway and i find it manageable.
To prepare you the nurses sprays your hair wet and then smooths conditioner on to it. The second time she put a paper type hair net on to prevent scalp burning when in contact with the cooling cap. My hospital uses Paxman but I believe there are other types. The nurse then puts a blue cap on your head and has to pull it down quite hard to make sure there is contact with scalp all over. A hairband protects your forehead. There are two pipes that come from the back of this cap and they are connected to the machine and the coolant circulates through it. On top of the cap there is a fabric outer cap to keep it in place. This has strings that are pulled really tight and there is a chin strap. It has to be tight but certainly manageable.
There is then a 30 minute cooling period where the temperature is reduced before the chemo can start. I was ok though to have the premeds put through during this time.
I do find it very painful for the first 30-60 minutes but it does help to take paracetamol first. After this time it becomes more bareable and your head sort of goes a bit numb. I managed both times to have it on for 7 1/2 hours so it is worth trying to get through those first few minutes. After the 90 minutes the machine is turned off and you have to leave the cap for a few minutes to defrost. You may have icicles on your hair and will still have the conditioner in.
You will still shed hair with the cooling cap but the nurse said this is normal and to persevere and she also mentioned the hair follicles being somewhat protected so regrowth is stronger and quicker. I started shedding hair on day 14 and although my hair has undoubtedly got thinner- no good with percentages- but I can go out without a hat, scarf or wig. it is upsetting to have the shedding but it is part of the process. You are told to wash your hair gently only twice a week. Paraban free shampoo. Dont rub it in. Use a wide tooth come to remove any shedding hair. The nurses are all trained in it and can give you support. In my unit there are quite a few ladies trying it. I believe it works better on some chemo regimes than others.
I have noticed that I started losing some body hair on day 14. (not eyebrows or eye lashes yet) I spoke to the nurse yesterday as I feel I probably would have lost a whole lot more on my head by now without the Paxman. I will be carrying on with it for the next two sessions as i feel the discomfort it worth it. I would say you will still lose about 50% of your hair but I think you need to focus on what you are actually keeping. I have hair grips, scarves, hats and a wig if I need them but I would recommend having a try and if its not for you- that's fine. its got to be a personal decision. Paxman has a good website that is worth looking at.
I realise other people may have different experiences but so far for me (Half way through) chemo it has been worth it and on the advice of the nurse going to keep on with it.
Thank you for taking the time to share your personal experience with using the cold cap. I’m sure those reading your post will have found it helpful to hear how you’ve found using it, and appreciate you being so honest with how you feel about hair loss.
I hope you’re finding being a member of the Chemotherapy forum and the Womb (uterus) cancer forum to be a comforting source of support just now. I noticed that you’d said you’re halfway through your treatment at the moment and I hope it continues to go well without experiencing too many side effects.
Should you have questions or concerns about your treatment, there’s a team of Nurse specialists here at Macmillan who there are to help. They can talk through any questions and concerns you have about diagnosis, treatment and side effects.
You’re very welcome to speak with the Nurses on the Macmillan Support Line, every day from 8am to 8pm. To get in touch, please call 0808 808 00 00 for free, use live webchat or send an email during the opening hours. You can also post in the Ask a Nurse section on the Online Community from Monday to Friday.
When you contact the Support Line there will be options to speak to the Information Nurse Specialists, the Information and Support advisers, and the Money and Work teams. They can provide emotional support, practical information, and financial guidance alongside offering a listening ear.
If you need any help using the site or finding additional support, please don’t hesitate to contact the Online Community team. You’re always welcome to email firstname.lastname@example.org or send a private message to the moderator account.
Macmillan's Online Community Team
first lot of chemo yesterday 1st of august, I have prostrate cancer at 52.
I did try the cold cap , but sorry to disappoint everyone but I personally found to to much pain to keep my hair , and it’s such a shame I have lovely grey full hair of hair that I get plenty of comments on .
but hey , I was sitting next to another patient who was on his third lot of chemo , 71 years of age and he still had his hair though it was slightly thinning but nothing noticeable. He found washing very light fingered and used a Afro Comb he reduce the hair loss .
which I will have already started to use
well done jane2511 you done brilliantly and I have a high pain threshold
It's Megan here from Macmillan's Online Community team. I wanted to reply to thank you for sharing your personal experiences in this discussion thread. I'm sorry to hear that you found using the cold cap painful. Everyone has different experiences with scalp cooling and I'm sure members reading your post will find it helpful to hear about your experience.
I'd like to help you connect with others on the site who may be in a similar situation to yourself. I wondered if you'd like to join the Prostate cancer forum?
You can click the group link and select the grey 'click to join' button towards the bottom of the page. Once you introduce yourself I'm sure others will be close by to offer some support.
I hope this helps you find the support you may be looking for here on the Community.
The Online Community team is here to help and you’re always welcome to get in touch any time you have some questions. You can also email email@example.com every day, or send a private message to the Moderator account.
Macmillan's Online Community Team