I have just been diagnosed with recurrence of cancer on my chest wall. I am getting surgery and chemo - prob taxotere.
I just wandered if anyone used the cold cap and kept all or a great deal of their hair with this chemo regime? My hair only grew back in Feb after primary dx.
Although I am asking this, I would also be nervous about using it as I know my onc is not keen on it. ( I tried it with first chemo - AC - but lost hair anyway). I know there are thoughts in the medical field that if it shuts down blood vessels in the scalp, then it may do the same in rest of body , therefore not allowing chemo to get ‘everywhere’.
I used the cold cap for 6 Taxotere. Had general thinning and lost hair on sides of head, I guess from pressure of lying on it at night. I certainly held onto a lot more hair than I did for 6 FEC when I also used the cap and still lost nearly all of it.
I still needed to cover my head with a scarf when I went out but comfortable around the house, not too cold!
Downside was that I needed to wear it longer than with FEC.
Was never advised that it might influence effectiveness of chemo.
Hi, I used the cold cap with 4 x fec and 4 x taxotere in 2006 and my hair only thinned, hardly noticeable, but I was very fortunate. I think about 7 or 8 of us were using the cold cap and at least 3 still lost the majority of their hair. My onc told me it only stops the chemo reaching the blood vessels in the scalp, I still lost my eyelashes, brows etc and had most of the other side effects. Probably a lot of other ladies will have different views on the cold cap but that was my experience.
Best wishes
Jan x
Being a nurse I can understand what onc says about shutting down the whole system to a certain degree - as the whole body does go cold. Still interested to hear your experiences, but having used it once already, I am not sure I could ‘stand’ it for 6 cycles!! Its something I will have to think seriously about, as I am really really not looking forward to losing hair again. I have kept it short since it grew back in (bit of a posh cut - altho I got there first - lol), so wander if would notice thinning more than if it was long??
Love
S
xx
ps - was weaning myself off this site to get on with life so cant believe that I am back on looking for more support and advice - I HATE THIS DISEASE
I used the cold cap for 4xFEC and 4xTax 2006, thinning was more on the tax, however didnt have to wear wig or scarf, managed to disguise the full extent by wearing hair in high ponytale.
dont pluck eyebrows and be gentle with eyelashes during tax.
Hi Sparkler,
I remember you from last year when we were both dx with primary BC. I am really sorry it’s come back so soon for you - my next examination is Jan and I’m dreading it. Can’t really help re the cold cap - it worked for me on FEC but not sure about other regiems.
thinking of you
cheers
caroline
Thanks for the replies. I dont think I will bother with the cold cap - dont think I have the energy - I did find it torture.
Unfortunately, I found out yesterday the the cancer has spread to my lung. I am just so shocked, stunned and upset - and obviously it aint good that this has happened so fast. Have a meeting with onc tomorrow to discuss things.
I hate hate hate this and just cant see a way out of the black hole I am in just now.
Realise this is old post but just in case anyone looks it up i would like to add my thoughts, I have used the cold cap for all 6 fec cycles. I had quite alot of hair loss but it just looked like it was thinning out. I had no need to wear a scarf or wig but have been wearing a hat when I go out it is really cold at the moment and I probably would of anyway!
If I had to go theough chemo again I wuld not use the cold cap as each time you do not know if they will say that there is not enough scalp coverage (you get freezer burn if not enough hair left) so I found it an extra thing to worry about!
I am however really glad that I stuck with it, it was my way of saying this (cancer) is not going to beat me, that this is my hair and I am going to keep it!
Should anyone feel the same way and try the cap you should know that you should use gentle shampoo and not style your hair needlessly i.e. strighteners or to much hair spray you do need to treat it gently.
Hope this is of some help and good luck to anyone trying the coldcap.
I only managed to keep the cold cap on for one minute as i thought it was torture, i hated the idea of losing my hair, i finished my chemo in aug and my hair is now a good length and very dark and healthy, i had 4 epi and 8 cmf yuk even thinking about it makes me feel sick but although i lost all my hair i still kept my eyebrows and lashes which helped a lot.
Sparkler i have been reading your posts and i am thinking of you it must very emotionally exhausting to be going through what you are going through, this is the second time for me with bc and although so far iv,e not been dx with secondries i still feel very down so i can understand how bad you must be feeling.
Love Reneexx
Sorry your feeling so down just now - I will keep everything crossed that you NEVER get dx with mets xxx
I am actually now feeling very at ease with my dx. I did a ‘mindfulness’ course (last day of it was day I found out about mets in lung!!), and I know this has helped me deal with this - I am living for the moment - and thats the only way to do it. I will get angry, sad etc again, many times I am sure, but for now I feel in a good place. I have done a lot of the ‘practical’ stuff already re finances, will, seeing about funeral this next week. I have made loads of fun plans for the next 6 months - with my daughter, or friends or both.
I noticed today that the hair in my ‘nether’ regions has started to fall out - but still intact on my head so if it stays that way the torture of the cold cap will be well worth it. I do remember those 1st 5 mins especially tho - I just cried.
I wish you all the best.
You say this is your 2nd time with bc - is it same side or other side and what treatment have you had or to get?
Hi Sparkler,
I was first dx oct 1990 when i was thirty the tumour was neg grade 3 they said it was particularly agressive so had lumpectomy, 6cycles cmf and 6wks of rads had a lot of scans and scares along the way as you know every little ache or pain worries you, my children were 8yrs and 6yrs at the time never a day went by when i didn,t think about cancer in some way and was just starting to get comfy again when it came back on same side, right breast nearly 16yrs to the day of last dx oct 2007. This time i had immediate recon, diep method, lymph clearance (what was left of them ) 4 epi and 8 cmf no rads as can,t give it twice on same side, tumour was grade 3 stage 3 triple neg and most of the breast was diseased with dcis,although i was terrified at the thought of going through all of it again i am at least fortunate to see my children grow into adults so i don,t like to complain too much considering what a lot of young people are going through with bc, my heart really aches for them because i know what i felt like all those yrs ago. I had a couple of scares during my chemo when the onc thought my liver was affected it was a terrifying time i don,t think iv,e got over the shock of it yet and i don,t know what tomorrow will bring, but i am trying to get on with my life although bc fills my mind a lot of the time. bc certainly messes with your sanity and only other bc sufferers can truly understand.
Anyway enough about me going on, you are more important just now and i hope everything goes well for you and the treatment keeps you well for a long time to come, i,m not very good at posting as i,m just starting to get used to it so hope i,m not just rambling.
Take care
Reneexx
Your not just rambling - its good to get responses to posts dont you think?
BC will always be on your mind - spose I have not had long enough without something happening the past 18 months to truly ‘get on with it’ and find out if it would have been on my mind less as time went on. It is sure on my mind every single day now - but I try not to let it spoil things.
Hope your recon went well - I had a date for my recon and everything before my mets were dx so that will never happen now. Its soemthing I was desperate for but I would happily trade recon in and live boobless if it got rid of my mets!!
Onward and upward!!
You take care and keep posting - your experiences will help other women
