Cold cap advice?

[Shluggie]

Im a very lucky gal whose cancer was caught early (by accident) at stage 1c. I've had surgery and about to start chemo tomorrow. Carbopentin only. They booked me a cold cap as I was originally going to have Carbo + Taxil which usually results in hair loss. Now the risk is lower so not sure whether you'd advise I use the cold cap or not. Has anyone had experience of this? Thanks and good luck to you all xxx

[Schnauzer19]

Hi, mine was caught by accident too but unfortunately although I was originally staged 1c I was upstaged after surgery due to microscopic cells on my omentum. I used the cold cap and I still have my hair after finishing paclitaxel/carboplatin, albeit thinned it still looks in tact. If you meant you are only having carboplatin? then I don’t think that causes hair loss like paclitaxel does so you may not need it. Hope all goes well with your treatment x

[Kaitlinsmum]

I have had all sorts of different combinations of drugs over the past 3 years and have found the cold cap to have worked very well. You might as well have a go. You can always take it off if it becomes uncomfortable. Take some nice conditioner that you like . Good luck x

[Amber-0]

Hi I had my first chemo carbo/taxil 3 weeks ago and had the cold cap. I was told if you wanted to try it , it had to be from the first treatment so I decided to. I have only just experienced some hair loss over the last 3 days but it has slowed down now.

I am having my 2nd Chemo tomorrow , wish you well.

[JMB1966]

Hi Shluggie

I had carboplatin/paclitaxel and cold-capped from the start. I took two paracetamol about half an hour before the cap went on, to try to stave off the headache. It was certainly uncomfortable (like a bad ice cream headache) and my treatment took place in winter, so they had to pile me high with blankets as I struggled to keep warm, but I was very lucky as it worked well for me with no noticeable hair loss, just a bit more than usual left in the plug hole when I washed it!

I was given piriton (antihistamine) in my drip and that made me very drowsy so probably helped.

Also I was very anxious (I mean properly refusing to allow them near me) before my first two treatments so was given lorazepam, which definitely helped!

Best wishes to you and everyone else out there dealing with this

Janine

[LovemyJackRussell]

I would ask for their advice, they will be able to tell you whether Carboplatin on its own will affect your hair.

[OCacc]

Hi Shluggie

I was also diagnosed 1C and have been on Carboplatin on its own. My oncologist advised that while mild hair loss could be a side effect, none of her patients experienced drastic hair loss. She also said that there was no need to have the cold cap on Carbo alone, whereas Paclitaxel is the drug where hair loss is more common.

I’ve had five cycles so far (last one tomorrow) and have experienced zero hair loss. Of course everyone is different, just sharing my experience.

Hope all goes well and that chemo is kind to you.

Nadine 💐

[NewtonEmma1900]

I don’t believe that carboplatin causes hair loss. I had carbo/taxol and lost my hair. For my recurrence I had carbo/caelyx and did not lose any hair. Hope all goes well!🙏

[BadgerBright]

Hi Shluggie This is great news that your OC was caught early. I have had 18 sessions of chemo in total and I found that with carboplatin alone I did not lose my hair. I did when it was combined with taxol. I realise that everyones experience of chemo is different so just sharing my experience. I have not had the cold cap but other women I know have and they say that after a time you get used to it. They say they wear a head band around their forehead so the extreme cold doesnot touch the skin. This is uncomfortable apparently. However, the cold cap does mean you are in the Unit longer and a carbo infusion itself only lasts about an hour. Obviously, there are the pre drugs anti sickness and a steroid. Hope this helps with your decision and hope it goes well. BB.

[Cazy1010]

I was first diagnosed as 1c , then after hysterectomy it came back 2a, I still had 6 cycles of carboplatin and no hair loss xx no cold cap xx

[Photo96]

hi there I was diagnosed with stage 1a 27 years ago. After surgery I had Carboplatin chemo only ( My cancer was high grade which was why had chemo ). I didn’t loose my hair and I didn’t use a cold cap. Ask your team at the hospital they should be able to tell you. Wishing you all the best with the treatment.

[ZenaJ]

Hi there, I used the cold cap back in 2013. I had both drugs as was stage 3C. The cold cap definitely doesn't suit everyone. It can be painful for a few minutes but settles down. If you have very thick hair it's less likely to work as it needs to connect with the head tightly so the right size is important. Also, it takes longer in the chair. Having said that, I'm so pleased I used it as my hair was saved. It was a bit thinner but I still looked the same. Take blankets and extra socks as you'll feel a lot colder than usual. You can't use any products on your hair for a few months if you manage to save it.

Good luck with it all. x

[Motiva]

Hello Shluggie,

I used the cold cap. There was lots of misinformation on the ward and they took it off early so I did lose hair and shaved it off. However there is as good study showing it regrowing better with it so I preserved. I arranged some training and the team now use it a bit more often. It is a bit of a faff for the staff when they are already stretched but it gives us control over one aspect of our treatment.

My hair grew back v thick and darker.

It is initially very cold- crispy hair icicles if you have some! I played a rock playlist very loud, tapped my arms and after 15 minutes the endorphins kick in and it’s fine. If you like cold water swimming you may enjoy it!

Well done on an early diagnosis to you and your GP.

F x

P.S. take in some conditioner as it stops it sticking to your hair and pulling it as it gets removed.

Good luck.

[Catfeeder]

Hi Shluggie

I had just carbo and the oncologist advised unlikely any hair loss. I didnt have any hair loss and didnt use a cap. I am stage 1c3, and had 5 rounds. Because I had very good kidney function, I had quite a high dosage (that they did reduce due to other side effects, but not hair related)

Take care ladies x

[bamboo89]

I never lost hair on Carboplatin either - it thinned slightly, but then I'm old and its thinning anyway...

[Alice77]

My first chemo involved 8 cycles of Paclitaxel and Carboplatin and although I used cold cap throughout I lost almost all my hair, my eyebrows and lashes. This was partly because the hospital did not have a machine so the cold caps came from the freezer,were not always completely frozen,and the nurses were so busy rhat it was not always changed at the time it should have been. My first recurrence was treated with Caelyx and Carboplatin and I used the cold cap again as I was told that my hair might thin. So far I have experienced only a very slight thinning which is not at all noticeable.

[Shluggie]

Thank you all for taking the time to share your experiences and tips. So helpful. I had my first session this morning and used the cold cap with no problems but it seems they are desperately short of machines so we’ve decided to stop using and allow more access for people at high risk of hair loss. I’m already losing hair due to having to stop hrt anyway!! Such joy! Thank you again. 😘

[Saintgermain]

As a seasoned cold capper it's the Taxol that causes the hair loss not the carboplatin over the moon for that it was caught in the early stages.