Interlace trial hair loss

Hi everyone, I’m 4weeks in to the interlace trial with the extra 6 weeks chemo. I did get my very long hair cut quite short at the beginning and was so glad I did as the hair loss I started to get at the weekend in the bath was already quite upsetting. So going a bit GI Jane tonight and going to have it all off. I would like to know how anyone’s experience of their hair growing back on the trial went or is going. The chemo I have next with my standard Chem/radio treatment I start in 3 weeks is chemo that doesn’t make your hair fall out anyway, not that I will have any. But did your hair start to grow back after the paclitaxel treatment or after the whole 14 weeks on the trial has finished. My best friend gets married the beg July so it woul be nice to not look like a tennis ball​:hugs: And I’d just like to say good luck to us all and keep positive :heart_eyes: Nicky

Hey I was on the trial and sorry to say I my hair didn’t even start to grow until 2 weeks after all treatment ended :flushed:, get yourself a good wig. I’m now 10 months post treatment and my hair is nearly Bob length xxx how are you finding the trial xx

Hi Nicky !
I’m on week four of the Interlace trial too. Had chemo no 4 yesterday.
So far so good for me I’m starving all the time from the steroids but so far nothing else and I’m luckily feeling really well.

Interesting to hear about your hair, so far. I’ve been fine and was told it may get a little thinner (I have baby hair already…) but they didn’t seem to think it was likely to get hair loss but then everyone is different I suppose.

Hope everything goes ok for you nice to know there is someone out there on the same week as me on this journey :slight_smile:
Sx

Hi, I’m finding it ok so far apart from the hair loss and am wide awake for the first 2 nights after chemo. I’ve had to clipper it all my hair off 2 nights ago as I’d lost so much but just on the top. Ah so did your hair only grow back when you finished ALL the treatment?

Yeah it’s good we are on the same timeline. I’m really pleased your hair is hanging in there. I really wish mine had, but it wasn’t to be. It’s nice to be able to have somewhere like this to be able to talk to other ladies going through the same actual thing🤗

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Hey yes my hair only grew back after I had finished all treatment sorry :cry:

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I’m finding it ok actually. Haven’t been poorly apart from getting a bit tired and being ravenous most of the time from the steroids :joy: sometimes a get a bit nauseas. The hard bit so far was the hair tho. How did you find it

Hiya all, I’m starting this trial and have my first chemo in 2 weeks, did any of you try the cold cap? I know in the grand scheme of things loosing my hair is trivial but at the same time I’m desperate to try and keep it, I have always had long hair and knowing I’m going to loose it all is quite overwhelming x

Dear Gizzy,

One of the drugs on the Interlace trial does make you lose your hair - and probably eyebrows and eyelashes too… :cry:. I have seen ladies with the ice cap on to try and keep their hair - my only ‘knowledge’ is that a friend did this but her hair fell out anyway. However she now has a fine head of hair again and you would never know she ever lost it. If I were you I would do what Jixernick did and embrace a shorter style so that it’s not so horrible when great strands of hair fall out. It’s a horrible side effect but it is only temporary and you need to be cancer free, so know you know it’s worth it… :kissing_heart:

Thanks Jacks133, I totally get it’s a trivial thing and I had heard so many mixed results about the cold cap, may need to get some make up advice from someone as I totally can’t draw my own eyebrows on :joy: (I am desperately trying to find some humour in all this)
Am definitely going to get it cut shorter before I start chemo it’s just so much to take in! X

I think you’ve hit on something there about the humour - you will need to embrace it I think, because otherwise it can get depressing as well as frightening. You could have fun with different coloured eyebrows to match headwear??

Seriously, it’s going to be hard, but you’ll get there. When I lost all pubes from radiotherapy the nurses were joking that people paid good money for that - I hated the feeling and it felt like it would never come back - but it did, of course. Nature will prevail! Xx

I don’t doubt there are some really tough times ahead but I am trying with the humour! One of my friends has kindly sent me all sorts of random wig ideas! I know it will grow back, it’ will be a learning curve having short hair (if any :joy:) as never done it before! X

Hello ladies,

Just thought I’d share my experience of hair loss on the interlace trial and using the cold cap.

I started my treatment at the end of September 2015 and I used the cold cap for the 6 weeks of the induction chemotherapy. In all honesty, I think it just delayed the hair loss. I didn’t lose it all but it continued to shed throughout my treatment and for a good few weeks afterwards until it was extremely thin, especially on top. I think the cap should have been changed more frequently throughout the chemo therapy sessions but I felt awful badgering the chemo nurses to change the cap when they were rushed off their feet. So, It may have worked better, had it been used properly. Also, I lost my dad suddenly, just as I finished treatment and I’m not sure if the shock of that exacerbated the hair loss.

In terms of timeline, I was wearing hats throughout the 2 months following treatment, but by the beginning of April I was able to have it styled into a short pixie cut and that did so much to lift my mood. It wasn’t the long hair I was used to, but to be hat free and with an actual style, felt amazing.

More importantly, 6 years on from the trial, I’m still here :blush:

I wish you all the luck in the world with your treatment. As I got to the end of mine, I remember feeling as if I was walking through treacle and I had some very dark days, being physically and emotionally drained. I think the best advice I can give ( & I wish somebody had said this to me) is to take your time to recover both mentally and physically. I was so desperate to get back to ‘normal’ that I really didn’t take the time out that I needed to recover & I think it slowed down that process. I can’t stress enough how you need time to take stock of your experience and to let your body heal.

Sending love xx

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Thank you MrsP68 it’s really nice to read your story and experience.
I am having my hair cut this week before I start, not really short but back up above my shoulders as currently it’s right down my back, I am slowly resigning myself to the fact that I may well loose it all and I know that hopefully one day I will have it back! I get this is a small price to pay to get better and have been looking at hats etc in case I need them.
I am really grateful to be part of this trial I just hope I can get through the extra weeks of treatment ok! X

Hi Gizzy

That’s exactly what I did. The chemo nurse told me to go as short as I could as it made the cap more effective apparently. And not only that, it didn’t look quite as straggly as it got thinner.

I saw the trial as an opportunity to be part of something that may change cervical cancer treatment going forward and was grateful for that (but also scared of the unknown).

We do what we’ve got to do, don’t we?! It’s not easy but it is doable and the side effects of the whole treatment regimen only started to kick in, once the end was in sight.

I’m here if you want to ask any questions and will be willing you on!

Xx

Thank you, it’s so good to hear from someone that’s been where I am, as nervous as I was going for the trial I would of felt so silly to turn it down, your totally right and hopefully this will help others in the future.
I am trying to be positive and find some humour to help me along the way, no more bad hair days or spending half an hour drying my hair are pluses I guess!
I go for my chemo assessment tomorrow and to see the unit which in a weird way im ok about, it’s the start of the journey.
Thank you again for taking the time to respond, it helps a lot xx

No problem at all. I remember those days in the run up to starting treatment and feeling scared but just wanting to crack on with it.

I wish I’d used this forum throughout my treatment but I think I was in denial, didn’t Google or research anything. Almost like if I didn’t talk about it, it would go away. It was only when I’d finished that I came here, and I realised then that it would have been so beneficial to be part of a group like this, to ask questions and know that my feelings and my side-effects were normal.

So, if you have questions going forward,(or want to compare notes :joy:) please shout out!

Lisa xx

Thank you :blush:
Had my pre assessment today and they seem really nice, I’m going to try the cold cap for the first go and see what I think but I imagine like you I’m just delaying the inevitable!
Was nice to see where I’m going but also weirdly emotional! I’m sure I will have lots of questions so watch this space and thank you again xx

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I am now getting this treatment over in Australia after the trial results have been released. If anyone is up for it could you let me know your experience of how hard this was. I have three kids here and I really need to get a plan of action together if I am doing to be really ill. A dm would be great. I just feel like I need all the details. Thanks in advance.