Skin Sensitivity?

If you can tolerate the cold cap then definitely do it. The professional predications regarding efficacy were not optimistic but I've found the results to be much better than I hoped - I have kept most of my hair and the wig is still in the box!

All aspects of treatment have so far gone better than expected in terms of impact and side effects so feeling blessed in this respect. As of today I've done 16 out of 25 radiotherapy happening over 5 weeks along with once weekly chemotherapy. As soon as I'm finished I have 4 brachytherapy over 2 weeks and then I'm finished (hopefully).

Try and take it one day at a time if you can. Hope things go well for you. x

That is really positive to hear. The professionals have all told me not to bother with the cold cap but I still wanted to, I’m glad it’s worked for you and I will continue with it too. 

I have my second chemo this Thursday and today am feeling tired so am resting. I’ve only really had fatigue so I can’t moan. I think a few days I’ve definitely overdone it so I am being more careful now. 

I hope the rest of your treatment goes smoothly. 

I find the professionals can be dismissive of things like cold caps as they're more focussed (understandably I suppose) on the clinical outcomes and curing our tumours but the potential loss of hair was so traumatising for me there was no way I wasn't going to do everything possible to keep it. I know everyone's different in this respect but I have met several women who have felt the same on this journey so feel strongly that these aspects of treatment should be given more priority. After all the more positive we're feeling the better surely.

Do take it easy and pace yourself. When you're feeling good enjoy it but don't go crazy or you might pay for it the next day! Do what your team tell you and discuss any side effects early on as lots of things can be fixed or at least improved. There's lots of help available if you need it and don't want to lean on family and friends. Hope treatment is kind to you. x

I think you’re right actually as in the grand scheme of things hair isn’t that important and the clinical outcome is all that really matters.

I am definitely going to be a bit more mindful that I haven’t got the stamina I normally have. I’m only on week 2 of chemo so it’s all just new to me so I think when I’ve felt okay I’ve just done too much when there was no need to! I have a very supportive family so must make sure I lean on them more.

Can I ask now you’re doing radiotherapy have you found it tiring? Are you tired during the weekend? 

I've definitely had some fatigue but nothing too debilitating and I'm still managing my life albeit a little slower than usual! I'm doing chemo/radio combined so its hard to know exactly which is responsible, but I suspect the chemo is taking a bigger physical toll overall. I have chemo on Mondays and feel pretty well through the week but I think this is mainly due to the after treatment steroids you're given. These finish by Thursday and Friday night/Saturday are my 'weakest' days and not much happens and I can feel a little nauseated but again there is medication to help with this which I just take as routine now as its easier to prevent this than cure it. I'm perking up by Sunday and have so far been able to drive myself back to my treatment centre on Sunday nights which is 65 miles away.

I think family and friends will appreciate you asking for help as it can be tough for them to be on the side-lines watching you go through this and being able to offer practical help and support could be really positive for them.

Meant to say its worth looking into support vitamins etc around hair, skin, nails etc to give everything the best chance. I've got fake eyelashes on standby as these and eyebrows can go later on - mine are thinning - but apparently come back quickly and are easier to fake so I'm not too worried. 

Thank you for your reply. That’s so positive that you seem to be coping so well with your treatment.

i have actually got some eyebrow pencils and stencils for when I do start to lose hair. 

What week are you of radiotherapy? I have another 4 weeks of chemo and then straight into radiotherapy / chemo the following week starting 11th March. 

Is there any vitmains that you are taking that you would recommend? Xx

You're so welcome, we all need to hear some positivity when we're facing so much unknown.

I'm ready with the eyebrow pencils too and finding it hard to resist any false lashes that I see online... I have quite the collection but still searching for that easy, perfect option!

I'm in week 5 of radio (M-F) and Chem (M - so last chemo done!) after 6 weeks of carbo/paclo then I have 2 inpatient admissions for Brachytherapy starting next Sunday. I'm Stage 3C1.

I'm far from any kind of expert on vitamins but have gone for multivitamins, vitamin D, collagen, biotin, cranberry, bee propolis as far as I can remember. Also using lash growth serum and sulfate free shampoo/conditioner. I've got some sprinkle on hair fibres to bulk out thinning areas and they really work well so pleased with them. Highly recommend you get a silk pillow case - the difference that makes to how your hair looks is amazing. I was only able to wash my hair twice a week during chemo and have stuck with that to reduce stress on my hair and the silk made this so much easier. Using OPI nail envy on nails every day and they've frankly never looked better!

Hope you get on ok with treatment and happy to share my limited experiences if that helps at all. x

It’s nice to connect with people that are going through the same as me as although my family are amazing they don’t really understand. It’s been great to be able to ask questions to someone who is having the same treatment as I am having and it seems to be going well for you. I had a picc line last week but am currently in hospital awaiting a scan as they suspect I have a blood clot as my arm is swollen. Do you have a picc line?

How do you feel now you are nearing the end of your treatment? Are you tired? And I am the same stage as you 3C1.

I will look into a silk pillowcase as a few people have suggested it. And the vitamins I will have a read up on and get some. I feel like my skin is dull and I just look very tired at the moment but my sleep has not been great since my diagnosis.

Wishing you lots of luck with the brachytherapy and the rest of your recovery. 

xx

Sorry to hear you're having an issue with your PICC line, I hope this can be successfully resolved for you. I didn't have one, so can't comment, but it should save you a LOT of needles! 

I'm feeling more tired this week definitely but still managing most stuff and hoping to drive home tomorrow which is a 65 mile trip, so fingers crossed on that one. I think I've got off relatively lightly overall regarding side effects - apart from fatigue I've had some radiation cystitis to deal with in the last 2 weeks which can be grim if you don't keep your fluids up but hoping I'm on top of it now. I'm told this should settle down when Radiotherapy is finished. Bowels can also be a contender to go a bit haywire so keep the senna and immodium handy and talk to your team if you're having any issues with anything.

Skin can sometimes take a hit but try different lotions and portions if you can and see what might help. My skin has settled right down now and I'm using Cera Ve and MooGoo but when it was at its worst all I could manage was petroleum jelly.

Sleep when you can and try and get our for short walks if you can to help you sleep better... and drink lots.

Wishing you the easiest treatment journey possible. x