Cold caps

[Elizz]

Hi do they work ,are there any successful stories / tips please to help x... I am going to try but I have read how uncomfortable it is .

[Glas0824]

Yes mine worked... I lost about 50% of

My hair bit fairly evenly so never wore a wig, was creative with hair bands!

Take two paracetamol half an hour before it goes on!

[Topcat2]

I have been using the cold cap and find it is fine. It is really cold for the first 10 minutes but after that I don't even notice the cold in fact I keep checking to see it is still working! I have only done 3 sessions (1 cycle) so a little early to say if it's working but so far I haven't lost any hair. It is definitely worth trying.

Amanda x

[Kdiet]

I was on Abraxane/Taxol March-October and the cold cap and ice hands and booties worked for me but it does drag out the session by four hours. Have to be cold for an hour before the Abraxane is administered and stay cold three hours after the IV is completed.

[Elizz in reply to Kdiet]

You where happy with the results though x

I wonder could you wear the cap home

[RLN-overcomer in reply to Kdiet]

Wow great information on the timing I never knew.

[Kdiet]

Lost very little hair. No real neuropathy. The cap was changed every 28 minutes for a new, cold one.

[Elizz in reply to Kdiet]

Thank you so much starting Taxol in 2 weeks my hair has changed over the last few years taking medication already. I am going to give it a go x

[Kdiet]

Sounds good. You will do great. I found it not too bad. Just stopped working. The anti estrogen drugs are the key for me. Xx

[Elizz in reply to Kdiet]

So how many cycles did you have and what anti estrogen drugs are you taking please x

[Kdiet]

Did six cycles of Abraxane. Then radiation for tumors in sternum area. Then started Ibrance and Letrozole. The dose of Letrozole is 2.5mg daily. Ibrance is back up to 125mg for 21 days on, 7 days off. My doctor does not believe it is effective at 100 or 75mg. The clinical trials were done at 125mg. It is tolerable. Mainly fatigue. The Letrozole is accelerating hair loss that I think would have happened anyway perhaps in my late 70s and 80s. I am just 63. For me, the key is exercise everyday usually a 3+ mile walk or 7 miles on a recumbent bike. I am lucky as no tumors in major organs and a 95%+ match to Estrogen as the big culprit.

[Elizz in reply to Kdiet]

We are the same age well was on a trial with a mystery drug + letrozole + Palbociclib for 2 half years

So now Taxol 😱 x

[Kdiet in reply to Elizz]

My diagnosis is ER+. HER- Did that combo stop working? Had you had cancer before? I had it 22 years ago. Then it showed up Feb 2019. What was the mystery drug?

[Elizz in reply to Kdiet]

Had originally Brest cancer I 2013 then a fall in 2017 showed mets in spine , I have never felt unwell , so medication that stopped working a trial in London that worked for a time mystery drug a combination of inhibitors?? I am ER POS Her2 neg x

[Topood in reply to Kdiet]

We have the same diagnosis, and I had breast cancer 25 years ago! Similar stories...mine came back September of 18...now on my 4th type of treatment, but have felt relatively good throughout....I hope the same is true for you (but you’ve needed fewer treatments! :). )

[Kdiet]

Am in NYC. Recently changed oncologists. Like my new person. Think he is very smart. Good luck. The first day is always the worst on these treatments. Gets better from there. X

[kearnan in reply to Kdiet]

Curious to know (if you wish to reveal) why you changed oncos. I have been wanting to change oncos for a long time, but I love my cancer center and it has excellent reviews. I live in Brooklyn, NY. They have social workers, nurse navigators (who did all the work for me to get my SSDI), and attorneys that once I had to switch to Medicare helped me do a pooled trust spend down so on top of Medicare, I also now have full Medicaid and Medicaid pays my premiums for Medicare for Plan B and Plan D (rx). With having full Medicaid as my secondary, I do not pay a penny for anything PLUS I get (I do not drive and have no family or friends that even live in Brooklyn) free car service to and from ANY doctor appointments, even dental. That is a blessing. The cars are free, I reserve online and they have plastic partitions and the cars are spotless so that is something I really need.

Unfortunately, all the oncologists are on one floor so I do not wish to embarrass her or humiliate her by going to another one and not even sure another onco would feel comfortable taking a patient from a coworker. So I stick with her only because I do not wish to go to another cancer center. Very weird dilemma to be in and how do you tell your onco that you feel she does not keep on top of things and I am catching things she should remember know.

Was it hard to tell your former onco that you were changing? Would be easier if I did not love the cancer center itself so much. Oh, I am so in NY, Brooklyn.

[Kdiet in reply to kearnan]

Both my old and new onc are solo practitioners so they will not run into each other but they are both at Weil Cornell. I lost faith in my first one as she was rude and harried ALL the time and she really got thrown by Covid. She has a difficult office to deal with and she did not get along with other MDs very well. Love my new MD. He is smart and will return emails also though I do not abuse that. There are trade offs. I really cannot advise.

[hopefulinadks in reply to kearnan]

It is a difficult situation but it is also your life that you are fighting for. Tell her that you are appreciative of all that she has done but that you are feeling the need for a fresh outlook on your situation and that you would like to try someone else for awhile, that a change may do you good. When it comes down to it, who cares if you hurt her feelings. You are fighting for your life and any professional doctor should not take offense!!

[Topood]

I have heard that they work but that it is very expensive!

[ChrisVict]

Hi I used it for 2 treatments and then stopped the chemo and the cold cap I think the discomfort from the cold cap and the

Breakdown from drugs etc made me stop the chemo all together. In retrospect I would forego the cold cap do all the chemo and but now I’m on my 3rd Harmon treatment For MBC and

Really praying it works

Hope It reduces the amount of hair you loose but you still loose it and not worth the discomfort it does grow back!

[WaveCatcher]

Dear Elizz,

People seem to be talking about different cold caps...at my hospital the cold caps are not filled with ice or cool gel but are connected to a refridgerating/ condensing system. It cools your scalp to 4 ° Celsius.

The caps are placed on 30 mins or more before I.V chemo is administered, according to your hair density. The idea being to reduce chemo blood flow through the cold restricted blood vessels of the scalp.

The cap must be pulled down extremely tightly over your crown area, excluding any air pockets. You require tight contact with the cap for cooling to be effective . Otherwise you will develop a " monk's balding spot" & they will not use they cap on you after that...without the cap you lose your hair. Our nurses were great at checking for this but insisted that patients be responsible for being aware of their cap fitting correctly...and help check for air pockets at the top of the scalp area. It took 2 nurses & my help to get my cap on deeply properly.😄 I always felt like " Biggles" in it.

To help make you more comfortable with cold capping we were offered plenty of blankets from a warming cupboard 😊, cosy drinks, warm meals & snacks....although my cap chin strap was on so tight i had to hold it down further to sip my tea.😄 Tv was a good distraction. After the 1st ten minutes of feeling extremely chilly ( scalp) you will be numb until close to the end...sometimes a cold jaw / temple headache from the cold. It soon passes...Be COSY and kind to yourself as you defrost after treatment.😊

I only lost hair where my cap could not stretch/cover close to my ears & temples.

DO GET THE LARGEST CAP NECESSARY to suit your head size. Didn't wear a wig, but had to be a little creative at the front to cover up bald areas near my ears...it was fine. I did receive my chemo ( & cold capping ) on a much more frequent basis than normal as my cancer was so advanced & the capping definitely kept my hair in.

( Definitely consider the chill booties & ice therapy for hands if your are getting Paclitaxol

( spelling?) My long term neuropathy from taxol was dreadful & i need long term pain management for it. I did 12 cycles before they realised it was ineffective treatment for me...but the damage was already done.

Travel well, rest lots, be KIND to yourself.

Sending you VICTORY energy!!😃

[Elizz in reply to WaveCatcher]

Thank you for your knowledge and kind words x love to you

[Hidden]

I did cold caps in 2015. They worked. But I “only” had 4 sessions of taxol over 3-4 months.. If I’d had to do it more regularly and for a longer stretch, the cold is quite intense. If it’s a shorter stint, I recommend it heartily

[Dolphin_]

Hi I had cold cap when I had breast cancer ..sadly didn't work me but does for others ..it was too painful ...if I had a choice again I wouldn't my wigs were amazing and I was also quite happy to be bald ..it's who you are and what makes you feel happy

Xxx