Scalp Cooling

[Best521]

Unfortunately Xeloda/Capecitabine was an epic failure for me. Ended up in the hospital due to severe treatment side effects. While it is a tolerable drug for many it did not work for me. Moving onto Taxol. The Nurse Practitioner recommended SuzziPad cold gloves and booties on Amazon to keep the chemo away from my hands and feet in order to help prevent Neuropthy. I will bring the booties and gloves to infusion in a cooler. My question is to people who have used scalp cooling. What was your experience? Would you recommend Scalp Cooling? Any of your experiences with Taxol welcome.

Thanks!

[Yikes123]

cold caps worked for me. I used them in 2014 when you had to arrange it by yourself. Now I see them when I go for appointments. I’d like to believe the hospitals make the process simpler.

I had some thinning but kept my hair.

Good luck

[Best521 in reply to Yikes123]

Thank you! I was on the fence but since I’ve grown back some hair, eyebrows and lashes I would like to keep them. I see me when I look in the mirror

[GollyG]

Cold cap is working for me too. Despite nurses and doctors appearing to have very low expectations of its effectiveness, I haven't noticed any thinning even. I lost hair on head and body while on Piqray, which nobody prepared me for... It's an unpredictable business! Good luck with it.

[Best521 in reply to GollyG]

Thank you! I have encountered the same opinion from the infusion nurses at my cancer center, they were not big supporters of scalp cooling either. They were luke warm towards it. Very happy to hear it worked for you.

[LibraryGeek]

It worked for me for the first few months but then there were a few hiccups when the machine wasn’t working properly and I thinned on the top too much for me to want to be seen without a wig or hat, so when I moved on to Eribulin I gave it up and lost most of my hair at first. Now it is growing back, but shockingly is pure white! My natural colour was honey brown but I had been getting grey roots- my Dad was prematurely grey so it might be hereditary, and I am 63 so I guess it is time to embrace a change. Of course with wigs the world is my oyster! But back to you, if it is important to you it is probably worth giving it a try. If it is the Paxman system, there is a nice Facebook group.

Good luck with Taxol, I found it very manageable.

Jackie x

[Best521]

Thank you for the great information. I’m 65 and salt and pepper but a lot of white. This was very helpful. I wonder if I preserve my hair now will the next treatment take it away. If I am reading the correct information it looks like insurance will cover a one time amount for scalp cooling of roughly $1,800. Not sure I want to pay out of pocket after I exhaust benefit.

[Coddfish]

It was a complete failure for me. It very much depends on hair type and chemo drug. Assuming Taxol is Paclitaxel (sorry, the UK NHS uses underlying drug rather than brand names), you will get hair loss if you don’t cold cap. My hair is very fine and straight, it fell out within 3 weeks.

[Best521 in reply to Coddfish]

Thank you for great feedback. Lost all my hair on Trodelvy/Sacituzamab Govitican. What hair did grow back while I was on Xeloda/Capecitabine just covers my head and is very very fragile but I like not looking sick and having eyebrows. Early stage breast cancer survivors were stopping me in the supermarket to wish me well. I appreciated their kindness, but I like not looking sick. I also hated telling them I was stage 4 so I just said Thank you. This feedback is very helpful. Not sure which direction I will go in.

[HoneyBadgerLady]

I am using a SuzziPad cooling cap during taxol infusions. It helps but I've still lost a lot of hair.

[Best521 in reply to HoneyBadgerLady]

Thanks I saw the hat and may order it as an alternative to the scalp cooling system which is expensive once you exhaust your approved benefit amount

[awesome4ever in reply to Best521]

A friend of mine used another cap called ICEKAP that she bought from Amazon. It was reasonable priced and once frozen the ice packs were good for 2 hours which seems to be longer than SuzziPad and you can buy a set of replacement packs to extend the time if you need it. It seemed to work for her as she had minimal shedding when she was on Taxol. I'll definitely keep it in mind for myself when the time comes. Good luck with whatever you choose and I'm sorry Capecitabine wasn't effective for you. It appears it either works longer term or fails quite quickly. Take care.

[Best521]

Thank you I will definitely look into ICEKAP. It sounds very promising. Yes I was hoping the Xeloda would work for me and give me some freedom from infusions but unfortunately it didn’t. Oh well some people do very well on Taxol who knows what the future will bring.

[BarbieBeat]

I had wonderful success with scalp cooling

My hair after completing 6 cycles of carboplatin and taxol.

[Best521]

Thank you! It is great to hear you had success. It makes a huge difference.

[Catali02]

I also am having good success with it. There is a website called the Rapunzel project that is very helpful. If you contact them they are also very nice and helpful! Good luck!

[Best521]

Thank you for the great tip. I had not heard of the Repunzel project. It sounds very helpful. I will check them out. Glad to hear you are having good success.