Thank you so much for your reply.
One of the truly wonderful nurses at my unit has arranged for me to go to their other unit where I can use the dignitara system. I am crossing fingers that it will really work and that I can keep most of my hair.
Good luck with tax on your next cycle.
Hi Lisa and all the other ladies
I am new to the forum so please forgive me if I am jumping into the middle of a conversation.
I was diagnosed in October and had a lumpectomy and my first cycle of FEC on 20th November. I was offered the penguin cold cap at my unit, and haven't lost much hair yet although this might still follow as I my scalp is feeling a bit tender on the crown.
My concern about the Penguin cold cap was that it didn't seem to fit very well, had to be changed mid cycle for a new one from the freezer and was on before chemo for only 20min, during chemo and only 20 min afterwards.
I have looked at the different systems for scalp cooling that could possibly be available and they are Dignicap, Penguin and Paxman. Logic seems to dictate that Dignicap and Paxman which is a below freezing method and one that stays on for more or less an hour after chemo would be more effective. Surely the longer your scalp is cooled after chemo - the more it restricts chemo's ability to reach the follicles? My unit is currently trialing all three across their two sites and will choose which one they purchase based on the trials. I only know of one friend who used the Paxman system and although her hair thinned - she managed to keep most of it.
Has anyone had any positive/negative experiences with the different systems? From a purely personal perspective is there any system that anyone would recommend?
Thank you all you lovely ladies
Thank you so much for your reply. I have lost a lot of hair at the top of my head, it is very nearly bald. I do think it is where my head is quite flat on the top and the cap obviously didn't fit well although it was a small!
I do still however have enough hair on my fringe and the back for it to have been worthwhile so far, I am able to wear head bands to cover the bald bit at the top. I am going to see what the hair loss is like on the day of my next chemo 29/11 to decide if I have lost too much to continue with the cold cap, I have a haor appointment at the caring hair studio on Thurs and might have some of the length cut off and am thinking of getting a wig fitted just in case.
I think I hit a low spot when I last posted which I put down to the hair loss however I now wonder if it was just a low which I am sure will be repeated again during this process.
Thanks again, I have seen you on the October Optimists thread so might see you around on fb is you have joined
Welcome to the forums, you've come to the right place for support as the users of this site have a wealth of experience and knowledge between them.
Maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
I have just had my 2nd cycle (on Friday 8/11) of FEC-T 100 am having 6 in all as with most of you and have been cold capping, thought I was doing really well with no hair loss until week 3 after 1st cycle when the hair loss has been significant, now on day 4 of 2nd cycle I have a balding spot on the top of my head with lots of grey due to not being able to dye it!
It has been very difficult to deal with the hair loss as it feels so substantial and am now wondering if it is all worth it, but decided to continue to see how much hair falls out by the next treatment before making a decision.
I went to the caring hair studio just after my first cycle and they recommended that I kept my hair at shoulder length so that I could use the hair that was left to cover up any bald patches, now I am wondering if I should have cut it shorter as I am finding the amount of hair everywhere upsetting.
I decided to give the cold cap a go as I was not concerned about the extra time, wanted to not have the cancer bald head look (people who did not know me knowing I have cancer) and to spare my 8 year old daughter any additional anguish.
I have only been washing my hair once a week, have got a silk pillow case and am trying not to touch it too much, but do any of you ladies know whether combing it would actually make more hair fall out or whether those hairs would have fallen out anyway? I wonder if I comb out the loose strands will it prevent them from being in my tea, my food, my jumper, everywhere!
Any help/support would be great right now as feeling more low about my hair than the cancer!