Living well with bowel cancer

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svr

Hair loss on FOLFIRI

Hi all
I’m about to have cycle 6 on this regime (which I am on for life) and my hair has started coming out by the handful. My oncologist has agreed to reduce the dose of irinitecan to see if that helps but from looking on the forum it looks like it might not work. Does anyone have any experience of this or tips on how to stop the fallout? Feeling pretty gutted about it as I was told I shouldn’t lose my hair.
Sharon :x::x:

sare

Hi @svr, I haven’t got any answers for you but I am due to start FOLFIRI on Wed. When I signed the consent I was informed that hair thinning or complete loss was a known side effect and could happen (I wasn’t given the likely possibility of this ). When I had my previous chemo cycles I saw patients wearing cold caps (or cool caps). I wonder whether wearing one of those might help. I’m sure you will have answers before Wed but I will ask and post on here if not.
Like you, if it works for me I will have to have it for life so look forward to seeing the answers. Best wishes Sarah :x::x:

svr

Hi Sarah, I was told I shouldn’t lose my hair so gutted to find out that appears to be wrong. I’m coping with skin rash, bowel movement issues etc but this just feels like the last straw. I’m so upset 😥
I keep telling myself it’s only hair but if the treatment is for life it’s unlikely to grow back. I’ll obviously see how the dose reduction goes and the regime seems pretty successful in keeping the disease at bay so I should be grateful but some days are just so hard. I’ve seen others wearing cool caps too but it looks like torture. Anyway I’ll ask further questions when there tomorrow. Good luck with your treatment, I hope it’s trouble free :x::x::x:
Sharon :x::x:

sare

Dear @svr, I know just what you mean it’s hard to be brave all the time. It’s not just hair it’s our hair. Sometimes I feel that with the cetuxamab rash, the colostomy and the big steroid cheeks I now have I’ve lost part of my identity. I’ve told everyone I don’t mind if I lose my hair but I do really. Many people have tried to be kind and tell me how great I will feel when the chemo is over and it’s so difficult knowing it will never be over.
Karen @Baxter2 and Kim @Lirio345 on here are my heroes and I think they are both on long term FOLFIRI. I’m rubbish at social media but I will try and “tag them in “. They are both and inspiration and a ray of sunshine. If I haven’t managed to tag them please look at their profiles. Hang in there, Sarah :x::x:

Baxter2

Haha! Yes you've tagged us correctly @sare! Yes, @svr, I was also told "chemo for life" and that's how it's been since I started this journey. I was warned that I would lose my hair and given an NHS voucher for a wig which I still have. I use it very rarely. I still have hair all over my head but it's short and curly now. It has thinned over the years and hardly grows. I think the Cetuximab helps keep your hair and often turns it curly like mine. I have and wear one of my growing selection of baseball caps every day as I'm just not used to having short curly hair. (See my photo beside my forum name)This is maybe an option if you manage to keep some hair? I was never one for shaving it all off! Kim (@Lirio345 has lots of hair and I think has only experienced some thinning despite having a good many more chemos than me!

Any more questions, please fire away!

Sending you both lots of love,

Karen 🌻🌺🌼🌸🌷

svr

Hi @sare and @Baxter2, thanks so much for your replies. I just feel overwhelmed this weekend with side effects, hair coming out in handfuls and the fact that it’s never ending 😥 @sare I feel the same about losing my identity, it’s tough. And @Baxter2 you are a real inspiration, how you remain so positive is just incredible :x::x:
I’ll get referred at hospital tomorrow for a wig on the basis I’ll probably need one soon. To be fair it’ll hopefully be better then my actual hair 😂
Love sharon :x::x::x:

Baxter2

It's absolutely ok to feel upset and overwhelmed at times @svr. It's a tough old journey having cancer and looking ahead can often bring all sort of emotions to the fore. Trust me, we all have our down days for a variety of reasons, me included! I can't imagine what your going through having your hair come out in handfuls this weekend. I know I'd find that particularly hard too. We're here for you to listen, to try to help and to offer to hold your hand along the way. Tomorrow is another day.

Sending lots of love,

Karen 🌺🌼🌸🌻🌷

Lirio345

Good morning @svr and @sare (excellent tagging btw!),

I really feel for you Sharon and totally understand why you are feeling so miserable. On a practical note I have read that cutting your hair quite a bit shorter can sometimes help as the weight of long hair will no longer be pulling on your scalp. I would also suggest ‘never say never’ as the side effects can vary enormously over time and it is just possible that your hair could settle and re-grow again. Karen (@Baxter2) is of course right that I have a lot of hair but I put that down to the Cetuximab. However we are both on that and her hair has responded differently 🤔, - there are no absolutes in the world of cancer are there?

One of the things that I have never got round to doing is signing up for:

lookgoodfeelbetter.co.uk/workshops/

I hear such good things about this experience and how it can bolster your morale (and I think you receive a big bag of goodies!) - you deserve it.

Just picking up on something Sarah (@sare) said above about steroid cheeks. Both Karen and myself, and others have weaned ourself off steroids because of the various side effects (with oncologist’s agreement). It is still used on treatment day as IV, but that is all. Might be worth a discussion?

Finally sending you both a hug, it is very tough sometimes being on chemo, so meltdowns are totally allowed, and actually cathartic; we then pick ourselves up and deal with the next cancer curve ball - because we have to! Take care both, Kim :x::x::x:

dazedandconfused

@svr i don’t have any advice but can sympathise. I was also told I wouldn’t lose my hair on bowel cancer chemo and yet mine started coming out by the handful after cycle 2 of FOLFOXIRI. Of all the things I’ve gone through in the past 6 months it was this I found most traumatic. They only seem to offer cold cap to breast cancer patients at my chemo ward so it wasn’t even suggested to me.

I had long hair which I cut to my shoulders initially. Then when there wasn’t enough hair to cover my scalp I decided to shave it. I found it really liberating and haven’t worried about it since, whereas at the time it was all consuming. With the benefit of hindsight I could have got away with a short hair style as it has started growing back already a couple of months later and whilst chemo is ongoing.

I was worried I would look like Mrs Potato Head but like to think I’m more GI Jane!

svr

Good morning @sare @Baxter2 @Lirio345 @dazedandconfused
Thank you so much for your replies, it really helps to hear from people having been in the same position. I’m feeling a bit better today and in hospital for cycle 6 and a reduced dose of itiniceran. Hoping that helps but I’ve made the decision to go for a shorter layered hairstyle in the meantime and will be referred for a wig in case I need one.
I have actually taken part in one of the ‘look good, feel better’ zoom sessions on skin care and make up and enjoyed it. I got an amazing goody bag afterwards so we’ll worth it :x::x:
The only steroids I’m on are during treatment so I’m hoping to avoid steroid cheeks. It’s a bummer that so many things effect the way you look and present yourself to the world!. @dazedandconfused im in awe that you took the decision to go from long hair to shaving it off but if mine continues to come out I might make that brave decision too! At least no faffing on with stroking hair then, or worrying about it!!
Love sharon 💕💕

Ashford Al

Well as i started Folfori follically challenged am hoping i might get some growth ,any bets on the cold cap workin for me?lol take care guys ,Al.