Caelyx and hair loss

[Pumpkininja]

Hello,This journey against ovarian cancer stage IV with bcra1 mutation started in June 2016, with chemo, debulking hysterectomy surgery and more chemo...stayed in avastin and then olaparib as maintenance until

had a reocurrence in February 2022, spread to collarbone lymph nodes and tummy.Lost for the second time all my hair with carbo/ taxol/ avastin even with cold cap.

This year there was progression of disease in the lymph nodes around pancreas, peritoneal area and colon...Very small lesions and spread making surgery not an option.

I'm still asymptomatic thanks to Olaparib and Avastin.

Just got my hair back, didn't came as it was before. this second time came much thinner.

It might sound redundant as im facing serious illness: I really don't want to loose this hair.

Doctors are suggesting to change treatment to caelyx and I have requested cold cap .They say cold cap is not used with caelyx because doesn't causes hair loss...

I have read that can cause hair loss and thinning.

Any advise or sharing of experience would be much appreciated.

Big thank you 🌸

[Lyndy]

Hi Pumpkininja

Very similar to you BRCA 1+ dx 2015, done 2 lines of chemo plus Olaparib. Started line 3 in September carboplatin/Caelyx.

So far I am 2 cycles in and my hair is still in place!

Caelyx is not supposed to take your hair but occasionally it can cause thinning and loss. Which doesn’t really help you…

Maybe proceed to have the first round and see what your hair does?

If you are losing it you would then have a reason to have the cold cap if you wanted it.

It’s important to explain to your oncologist/CNS/anyone who will listen, that for you this is really important and part of your well-being and recovery. Maybe have another go and see if they will listen.

Best of luck with it, I will be interested to see how you find it xx

[Pumpkininja in reply to Lyndy]

Thank you so much Lyndy so glad you are doing well.You did those 2 cycles with cold cap?.I already explained but the doctor says none of his patients uses cold cap for caelyx and they didnt lost their hair. You feel any strong side effects from caelyx / carbo? Thank you so much and wish you all the best.

[Lyndy in reply to Pumpkininja]

No I didn’t use a cold cap (I am hopeless with cold) so hair is unaffected atm.

I do have sensitivity in ear/nose/throat which I think is Caelyx and a few mouth ulcers.

Not too bad tho xx

[Pumpkininja in reply to Lyndy]

Thank you so much Lyndy hope all goes well for you.Sending you positive vibes and many prayers 🙏🏼 🌸🦋

[Jud15]

Hi Pumpkininja, just to reinforce Lyndy's comments, I had carbo/ caelyx roughly 2 yrs ago. My very fine thinnish hair remained intact through all 6 cycles. By comparison on first line with Carbo/ TaxoI I was losing hair very quickly after first cycle.Good luck! Judith

[Pumpkininja in reply to Jud15]

Thank you so much Jud15 im starting to feel less afraid.Hope all goes well with you and fully recovery.🌸

[win_56 in reply to Pumpkininja]

Hi just wanted to reiterate what the rest of the ladies have said. I had carbo/ caelyx combo never lost hair nor did it thin. Wishing you all the very best. X

[Pumpkininja in reply to win_56]

Thank you so much win_56 wishing you all the Best ×××

[patricia54053]

Hi I had carbo/caeylx as first reccurance in 2020, no hair loss at all, on niraparib now for 2 years, very itchy scalp but hair all good

[Pumpkininja in reply to patricia54053]

Thank you so much patricia54053 ! May I ask you how long you could stay in caelyx?Because my doctor says I should stay on it if it works( without ending time).so is not like carbo/ taxol they put us for 6 months of treatment.

And also, apologies for so many questions : what where the main side effects you had?

Ps I never took niraparib only olaparib.

Notice this second time my scalp is very sensitive.

I just use a shampoo anti - chute or for density.And a mask. Followed by the ampoule anti chute/ or density.

And notice if I use warm water goes red my scalp and my forehead.So I try cold water.

The very itchy scalp could be some allergy maybe?

Same applies for the skin only products for atopic skins, no smell...

Hope all goes well for you 🙏🏼

[patricia54053 in reply to Pumpkininja]

Hi I only had carbo/caeylx for 6 months, then olaparib for 3 months, ended up in hospital with liver and kidney issues, stopped olaparib and was lucky to be put on niraparib, when I was on caeylx not many side effects, dry skin, itchy feet, the usual sickness for a week after treatment, good luck with your treatment

[Pumpkininja in reply to patricia54053]

Thank you so much patricia54053 wishing all the Best xxx

[Chelt]

Hi I have stage 4 ovarian cancer, I to have had debulking surgery and lots of chemo. Mine has spread to my liver and chest now. I had Caeleyx and my hair didn’t thin or fall out. I’m now on niraparid maintenance therapy I’m just hoping it’s working as I’ve only been on it for six weeks. Good luck in your journey xx

[Pumpkininja in reply to Chelt]

Thank you so much Chelt .Wishing all the Best with your journey xxx

[Ova-whelmed]

I had Caylex Nov 22 -april 23 for a peritoneal reoccurrence . My experience was positive I found it much easier to tolerate than pacitaxol and I didn't experience any hair loss.Good luck with your treatment x

[Pumpkininja in reply to Ova-whelmed]

Thank you so luch Ova-whelmed .Wish you all the Best xxx

[KimLJ]

Hi in my experience I have not lost one single hair!! Everyone tells you it doesn’t make you lose your hair except for the leaflets so I presume that’s to safeguard someone or there are a couple of ladies that have been unlucky. Good luck xx

[Pumpkininja in reply to KimLJ]

Thank you so much KimLJ wish you the very Best xxx

[Carpediem68]

Hi Pumpkininja

Do you mind if I ask a question? After your initial chemo, how long did you take Olaparib as maintenance for? Was it for 2 years or did you take it continuously until your recurrence in 2022? I hope you don't mind me asking.

Many thanks!

[Pumpkininja in reply to Carpediem68]

Hello Carpediem68 when I started Olaparib was still not approved as maintenance in Belgium was in April 2018.So after only having Avastin from 2016 until 2018 I was told i couldn't get more avastin because I had risk of kidney failure.

A doctor and some friends help me to have Olaparib in best hospital here in Belgium but no one would know if it would work or not because my last chemo was in November 2016 and we were in April 2018.

Anyway I think it worked because I remained in remission until 2022.So I took it for almost 3 years and half.The first time.

I dint took it properly in 2021 , thought cancer was something I could forget...i was addicted to sport and my performance would be affected by Olaparib ( big mistake)

Cancer returned I think in end 2021 and was diagnosed in 2022 February with cancer in the lymph nodes collarbone and tummy.

After carbo/ taxol , mri they told me I had chronic cancer and would never go away.

They put me in avastin/ Olaparib to slow down progression.so this second time they told me I would be in Olaparib until it stopped worked.

No limitation of time.

Hope it helps and feel free to ask any question.

Wish you the best xxxx

[Carpediem68 in reply to Pumpkininja]

thank you so much for taking the time to reply. They seem to be very strict in the uk about when you can have Olaparib and for how long. I’m only allowed 2 years. Very best wishes to you and I hope your treatment is kind to you and also very successful! Kind regards.

[Pumpkininja in reply to Carpediem68]

Dear Carpediem68 thank you so much. they are very strict here also... I had to fight alot.More with the system then with cancer...In order to have it from 2018 to 2022 I had to pay it privately.

Only now after the reocurrence is for free.

Maybe ask your doctor if any solution possible to maintain as preventive treatment for longer period.

They can argue there is no add value, not enough studies, etc...

If you have brac1 or brac2 because of risk of breast cancer you can argue back.

Wish you all the best xxx

[delia2]

Hi. My experience was similar to that of the others. I was on carbo caelyx for six months and had no hair loss. I then was on Olaparib for three years. I get how you feel about losing your hair but I think it will be okay on this regimen. It’s your skin and mouth and esophagus that you have to take care of. I hope it works for you!

[Pumpkininja in reply to delia2]

Thank you so much delia2 .wish you the very Best xxx

[Saintgermain]

Hi Pumpkininja I'm currently using the Dignicap for the second time for a recurrence I'm in the states Carbo/Taxol everyone's different as my hair is short but like frontline, I've experienced about 15% loss. I would contact the manufacturer I think in the UK you use Paxman they can tell you if it works with Doxorubicin. It makes for a long day and the home care has to be followed but its worth it to me.

[Pumpkininja in reply to Saintgermain]

that is amazing Saintgermain that you can take it home.So it really works to protect.Here in Belgium I don't think there is that option maybe in the future, would be great for everyone.

Thank you so much and wish you the very best xxx

[Saintgermain in reply to Pumpkininja]

The hospitals that use it have a freezer in your treatment room that they hook the cap up to I do use ear muffs that slip over your ears from Amazon because it is so cold! Wish you well hugs from Chicago

[Pumpkininja in reply to Saintgermain]

Thank you so much Saintgermain .For the forehead you can use maybe a headband or gaze avoiding the hair line...it's indeed not easy the cold cap...

Wishing you all the best xxx

[Pumpkininja]

Bobbylynn with taxol the hair loss is temporary will comeback dont worry. The cold cap helped me to protect my scalp.Wish you the very best xxx

[Pumpkininja]

Thank you so much really.I think I will be able to sleep thanks to you all.You are all amazing.

Be blessed 🙏🏼🌸🦋

[Doglover1410]

hi, I’ve had caeylx twice and no hair loss either time.

Hope you get the same xx

[Pumpkininja in reply to Doglover1410]

Thank you so much.All the best for you too Doglover1410 xxx