Ovarian cancer

A support group for anyone affected by ovarian cancer to come together, share experiences, and ask questions.

Recurrence

B19mau
Posted by

Been to Oncologist he has given me three options of chemotherapy for 2nd recurrence 3c HGS ovarian cancer.

1. Topotecan

2. Gemzar

3. Taxol 

This might seem silly but I have in my head I don’t want grandkids remembering me bald and Ill all the time. My hair has grown back from frontline and is shoulder length. I know taxol definitely cause hair loss. 


I would appreciate if anyone could share there experiences on these regimes and any success with cold cap. Also success stories. I have had carbo plat in and doxil in January so can’t have again.

NattyP123
Posted by

Hi B19mau,

Sorry to hear you are still battling this horrible disease. Yes it is the Taxol that causes hair loss. Have you or the tumour been tested for BRCA? If positive, it opens up more options for treatment, like parp inhibitors. Hope you hear from other ladies on here with relevant experience and positive stories. Wishing you all the best,

Natalie xx

B19mau
Posted by

Hi Natalie 

Thank you for replying. My tumour has been tested and I am BRACA Negative  so parps not a help to me.   Thank you for your best wishes 

Allipalli
Posted by

Sorry to hear you are having to go through more treatment.  

I have just finished 6 treatments of taxol and carboplatin.  I used the cold cap and it has been brilliant.  I have had very little hair loss and this has really helped my confidence.   I have spoken to several ladies who said they washed their hair a day after the chemo.  I didn't do this as a nurse advised me not to wash it for as long as I could.  I have left it for 4 days each time. Thia may have helped because the other ladies told me it hadn't been so successful for them.   The other thing I did was to have the cold cap on for as long as possible.  I had it on 45 minutes before my treatment and then during the taxol which was for 3 hours and then during the carboplatin for another hour.  I know this seems a long time but it has been worth it. 

When I had cold cap put on the first 10 minutes was the most uncomfortable and after that it was much more bearable. 

I hope everything goes well for you.   I definitely recommend using the cold cap, it was very successful for me.  

B19mau
Posted by

 Hi 

Great news about not losing your hair.  Do you have to ask Oncologist to arrange cold cap for day of chemo. Also do the nurses keep it on they don’t have to refill with ice or anything.  I wasn’t offered this on frontline but have seen people with them on mostly men.

I will ask at next appointment.  It makes such a different if you can keep hair I think.  Thank you for taking the time to reply and best wishes

Linkey
Posted by

I would definitely recommend using the cold cap it's not bad and it totally doable I wore it for six hours at a time. I have lost a lot of hair but I still have some I had other issues with taxol in that I had a reaction to it second go and they quickly whipped off my cold cap (I felt it unnecessary and probably why I lost more than I thought) I stopped taxol after the third cycle because the side effects were too much for me and resulted in hospital admissions etc so the last three were only carbo so no need for the cold cap. My friend used it throughout the same regime and kept majority of her hair. Do your research buy the correct shampoo and conditioner and get a thin headband and don't wash it for as long as possible once a week if you can. Let me know if you want to know anything else I've bust finished chemo got my scan tomorrow xx

Linkey

Linkey

B19mau
Posted by

Thanks so much for your reply. Can you suggest any shampoo or conditioner please I think I will give it a go. Best wishes with your scan.

Linkey
Posted by

As long as it's sulphate free, I did use body shop rainforest collection but the one I chose was being discontinued but you could always go check.  there are lots on the internet if you Google cold cap shampoo. I used herbal essence as well, the ones with no additives they are clear in colour.  Some of the chemo shampoos can be hard to use as they don't put the ingredients in that make it lather up so it is harder to wash it I found. Get a wide toothed comb and a head band to protect your ears and make sure that the cap fits really snuggly to your head you have to wet your hair and cover in conditioner before it goes on, I did it myself so I knew it was done correctly and don't start until your happy it's fitted properly. Take paracetamol before you start as it helps take edge off. It gets cold quickly and I kept asking how long before it's fully done but it was as soon as switched on and I expected it to be worse than it was.  have a hat ready afterwards as hair will be icy cold and even have frost on it so you don't get a chill. Don't wash it for a few days, and when you do don't be rough like normal do it gently and use a jug to rinse rather than the shower head as too harsh and water just warm not hot. Try to only comb it every few days the least the better sounds hard but it is doable and just put hat or scarf on if it's greasy. If you want to ask anything else just message happy to help it's a lot to take in but they don't push the cold cap enough it annoys me as it's got some fab results but you have to stay for longer my four hour chemo turned into six hour days, but definitely worth it xx

Linkey

B19mau
Posted by

That’s really helpful thanks so much for taking the time to reply.

Best wishes maureen

SAAGE
Posted by

I have never heard of the cold cap treatment and no one recommended to me,.  I started losing my hair after the 2nd treatment, then lost eyelashes, eyebrows.  I wish that I had known about this i would have tried it.  It took some getting used to seeing myself in the mirror.  I was reminded of "Fuzzy Wuzzy was a Bear" :) Really, the worst part was seeing the tears in my sons eyes  (50 yrs old) the first time he saw me without a scarf.

B19mau
Posted by

Hi 

It was never mentioned to me either.  I did although see a number of people using it when I had my chemo.

Linkey
Posted by

They tried to put me off having it saying you won't be able to tolerate it for six hours no one's done it for that long, which upset me and my husband said well let her be the guinea pig and be the first. I think it's more a logistic issue with being there longer and fitting other patients around you and the time it takes to fit it etc but I had it and want to now volunteer helping others use it and promote it and how it can have fab results xx

Linkey