Hi, I’ve just signed up to the site, I have already had surgery, one lump removed. Unfortunately not the best news with the result from the surgery, they haven’t got clean cut edge and quite a a high number of lymph nodes were found to have cancer cells, so i now need to have a CT scan scheduled for Tuesday, result on Thursday and my surgeon has recommended chemo first then further surgery. I’m guessing i will start chemo straight away but I’m concerned about hair loss for the christmas period, can anyone give me some information about the cold cap and how successful it can be.
Hi Sew, sorry you have found yourself here, and that you didn’t get better news after your wle.
I haven’t personally used the cold cap, and I’m not going to bother as my hair isn’t that big a deal to me, but I know there are plenty of women on here who have, and I’m sure they’ll be along soon to offer advice.
My oncologist told me the cold cap worked well in about 30% of cases, and ‘well’ meant that there was very little hair loss. Another considerable percentage kept some hair, though it did thin considerably, and for some people it doesn’t work at all. I have heard others on here who have been told they have better odds of keeping their hair, but I don’t know if it depends on what combination of drugs you are given, as to how good the odds are. I know that not every chemo drug prescribed for bc has the same effect on hair loss.
If you have not yet got a date scheduled for chemo, and it doesn’t look like it will start this week, then the chances are high that you will still have your hair for Christmas - it seems to start falling out at around two weeks after the first treatment. My first lot is scheduled for 17th Dec, so I’m guessing mine will start drifting around New Year…
Big hugs to you, good luck with the CT scan and results.
Sophie xx
Thanks Sophie, appreciate you replying so quickly. I should be concerned about bigger things than hair loss really, but I suppose with it being Christmas it just seemed more significant. If I loose it then I’m guessing it will grow back the colour of roots which I’ve been trying to hide for a long time. Jennifer Saunders is looking good with her look.
It’s the not knowing that’s hard to deal with, yet in a funny way waiting 3 weeks between by surgery result and the scan has been a bit of a reprieve, helping me get it clear in my head.
17th Dec seems a long way off for your 1st chemo.
Here’s a big hug back, hugs are soooo good aren’t they Sue xx
Hi Sew,
Sorry that you’ve had to join this club. Like Sophie I had a wle which was not successful so had an mx 5 weeks ago
I had my first chemo 10 days ago and haven’t lost any hair yet. I thought of using the cold cap but the MacMillan nurse advised me that using it could prevent the chemo working on any stray nasties on my head and for that reason alone I dedcided not to use it. Also it would more than double the time for the chemo drugs to go through. However while I was having chemo there was another lady there having her 4th chemo. She was using the cold cap and hadn’t lost her hair so I suppose it’s a matter of personal choice.
I’m not looking forward to losing my hair but it will grow back eventually.
Best wishes for the CT scan and let us know how you get on.
Wendy
Dear Sew
I’m so sorry you have had to join this club. I can remember being at your stage and can understand you been scared - it’s very normal. You will get through it. Take comfort in knowing I had cancer in 15 of my lymph glands and I still here nearly 6 years later and doing well. Waiting for the results of scans is ghastly. I also had a liver ultrasound on the same day as my body bone scan. Luckily both were clear.
I did try the cold cap on my first chemo. Personally, I didn’t like it and when someone told me it could allow cancer cells to escape I decided I didn’t want to take the risk. My advice here would be to take one stage at a time. At this moment in time, you don’t know when you are starting your chemo. You may not notice any difference with your hair until after your second chemo session even without the cold cap. You could be like me and try it once which would then take you into January before your next chemo.
Good luck in whatever you decide to do.
Jeannie
Hi Sue, good luck with your treatment. I’m coming out the other side after two ops, chemo and radiotherapy and am now on herceptin and tamoxifen.
I tried the cold cap for my first chemo, I found it ok actually and not too uncomfortable, but my hair all fell out after 2 weeks, over a period of 5 days, so it didn’t work for me. However it seems to work for some, or maybe they would have kept their hair anyway, it seems to vary so much from person to person. I was just willing to try anything to prevent hair loss as it was one of my biggest worries. But you do get used to having no hair, to start with I was very embarrassed about anyone seeing me, however gradually I started going bare-headed in the house and even answering the door to the postman! I wore scarves mostly and a wig if I needed to for work, but I’ve given up the scarves now as I was fed up wearing them, and wear my wig all the time outside of home. My hair is growing back nicely and I guess I might have enough to face the world without a wig again in a couple of months. It’s very scary for you right now but you sort of settle into a routine with all the hospital visits and the weeks will fly by. This site has been invaluable, anytime I wanted to find out about something I always found the answers here. Stay strong.
Gill
Hi Fellow Sue
I am sorry you have had this diagnosis. You have found already that there is lots of support here. There are some good threads on chemo to join also.
Like you I had cells in the nodes. They decided to start me on chemo before any surgery.
I’ve used cold cap: I have had 2 FEC cycles; now 29 days post first chemo and have had some hair loss but it looks normal to others. It is too early to tell but I think in my case it was worth a go. Figures I received for success were 50 %; I suppose your 30% was complete success. It does mean longer on the chemo ward, not washing hair more than twice a week, no products or hair dryer. I get a bit fed up between washes as it looks lank and greasy but it is there still. I cut it short before which helps apparently.
It gives some a head ache but I was alright. I seem to get headaches on chemo days, probably tension and it made them better both times. Trick is to make sure the cap is room temp or so when it first goes on and cools gradually, rather like the lobster warming up on the hob who goes to sleep but in reverse . After 20 minutes I forget that it is on.
I wasn’t advised there may be stray cells around hair follicles. The nurse I saw said no risk- that was my big worry. I’d better ask again!
It’s likely that, even if you do start before Christmas, you will have hair for a while yet. Do book a headstrong appointment and get a wig referral before hand, whatever you decide.
Waiting for scans and results is a toughie. CT scan is a funny one. You will feel like you’ve wet yourself. Watch out for this, not all CT operators tell you.
You are very welcome to send me a private message re cold cap if you want more info or would like to chat about it.
Lots of love,
Sue too
x
Hi sew hair loss is everyone biggest nightmare i think if you think you will be starting chemo you can oppt for a cold cap i didnt but theres a lot of women on here that did i kept my hair for as long as i cud was about 5 weeks after my first chemo when it came out it started to grow again b4 i had finished my chemo treatment of 6 months hope this helps a bit i had a mx 9weeks ago im doing ok
Thanks everyone for your respsonses, I do appreciate it so much and just communicating with someone who is going through or has been through this is so helpfull. There is a some really useful information for me to take on board, I can’t thank you all enough.
Has anyone heard of Professor Jane Plant, The Plant Programme
and if so what are your thoughts, experiences?
Sue xx