Cold Caps Users Past and Present, to Save Hair

sebm9 · January 2011

Sashette: It is possible to delay your chemo if you want/need. If you can get the caps in time, it is worth considering (and of course it's an individual choice). Meanwhile, there are things you can do to prepare for both chemo and cold caps:

- stop using deodorant with aluminum (it creates a bonding agent at the hair follicle and can actually trap chemo there)

-hydrate hydrate hydrate! You'll help your liver prepare for the chemo it's about to process, and liver function is also tied to the success of the caps

- enjoy your last warm-water hairwashes for a while ! :-)

If you PM me, I can send you my long writeup on caps and my method for doing it, coping with my hair, etc.

Best,

Susan

keeppositive · January 2011

Hi there,

Congratulations on finishing. I think the penquin charm idea is great! I think every one of us who finishes the therapy with cold caps should get one and wear it proudly!! Where do you get them? Maybe I can locate them thru a dealer and we can get them wholesale and everyone who finishes, or has finished can purchase one to proudly wear!!!! After all we are pioneer women in the states with this process. Maybe thru our efforts, this will become an available option(paid for by insurance)for everyone going thru this HELL!

I am starting chemo tomorrow. Today I took Decadron(steroid) this morning and no SE's that I can tell, except my sugar level went from normal to high after taking it. I got type 2 diabetes this summer, a month before my BC diagnosis--great year!! I have gotten it under control with diet-eating right and walking for exercise. I lost 32 pounds and my levels were back to normal. My general Dr. said it would spike from Decadron and perhaps Chemo and gave me a prescription just in case. He said I can go back to diet and exercise alone, after Chemo is over. Well, I have to organize all the stuff for tomorrow, sort of packing for a mini vacation--Yipee,what fun, the vacation from Hell!!!

Keep positive everyone.

Nancy

sashasz3 · January 2011

Congrats jpmercy!!! Can't wait to do my post --many months out----I am still shedding alot---wish there was someting extra I could do----doing the extra hours of caps---so hard not to become complusive--all I feel- I do is look for shedding hair--on my clothes ,floor --ect---the top of my head looks good--it is the dreaded above the ear area and neck---!!

mje123 · January 2011

Sashette,

I would say that you can definitely postpone your chemo until you can get the caps if it something that you really want to do. I did not start my chemo until over 2 months post surgery and made sure that I had all the caps and everything in place. I am now day 32 after starting treatment and have done 2 treatments of TC and have only 2 left. I have all of my hair and have had only minimal shedding thus far. Call the numbers on the penguin cold cap website and email them and they can help you out in getting the caps. Once you have filled out the required information/questionairre you can usualy get them fairly quick.

If you are committed to the caps then it is worth it to wait a short time to start the chemo

Lmflynn · January 2011

Wanted to add my congrats to JPMERCY!!!!!! You have been so positive and an inspiration! 12 times once a week with the caps is quite the achievement!

keeppositive · January 2011

HI,

Well I checked my blood sugar a few hours after the Decadron and it went way down, so I didn't take any medication. I Will take again in 5 min. and I will track again. Also wil keep tracking tomorrow and see how other meds and chemo effect my blood sugar. I can be the guideline for this condition on this site. What did you all think about my suggestion for the penquin charm?

Keep positive!!

Nancy

keeppositive · January 2011

Hi all,

I should be asleep, but Decadron has me wide awake. E-mailed my Onc. earlier to see if it would be okay to take a vallium to relax and fall asleep-she didn't answer I think I will do it anyway.

I washed my hair last night (actally was 4AM) couldn't sleep. I used the gentle non sulfate,etc. shampoo and Sea Chi leave on conditioer and hair growth formula. Dried with drier on cool, but used my round brush very gently without pulling. It took a long time and came out fair to middlin--not like it usually does. But I guess this trial run will help to realize how it will look for next 6 months(except it will be very grey-I have short hair, so as roots grow, grey will be longer than dark part which will just be on ends. Who knows? Maybe I will be silver fox!! I thought you could wash 2 days before and after chemo, but I miscalculated and did it 1 day before--I wonder how that will affect it.

Did 2nd trial with cold cap out of regular freezer-it was colder this time- was in for 2 days. After 5 minutes I got used to it, but nowhere near as cold as it will be from Hospital freezer. I was a liitle dizzy when I took it off, it was on for about 20 or so minutes. Well I'm going to go over everything and pack it up. I will be getting up at 5:30 AM to get to Manhattan in Morning rush. I want to get there extra early to park the car and start organizing everything. Good night all and keep positive!! Good luck to me and all those who are just stating out!!

Nancy

cmksocal · January 2011

Good luck Nancy -- and remember to take the aspirin/ibuprofen/tylenol product of your choice before starting your caps. And then every few hours -- it really helps.

Colleen

sebm9 · January 2011

Good luck Nancy! We'll be thinking about you.

Best,

Susan

littlepenguin60 · January 2011

Congrats to jpmercy!! Also best wishes to Nancy! Admire you greatly!

jpmercy · January 2011

Nancy

good luck! after the first Chemo you will be just fine! its all so hard to get started! the anticipation is the worst! the decadron kept me awake each week i hated it i took a xanex some nights to help sleep. hang in there and keep us posted!

Jen

Anniemomofthree · January 2011

Good luck Nancy - I hope the drive in was uneventful. i will be thinking of you today. I am just getting nervous. I start on Monday. I am having a training with my hubby, friends at noon.

Hang in there...

Annie

Sashette · January 2011

Thank you for your responses. I did reschedule the chemo to start next Thursday. The caps are being sent 2 day express and I ordered the shampoo and condtitioner reccomended on line plus the thermometer. I now have my 'local' list of things to purchase. At this stage it seems a bit intense both energy wise gettig it all done and money wise....2 day express cross country is a pricey way to go. It does give me something else to think about then the straight chemo experience. The nurses are curious and interested in the caps. So there is a little buzz. I feel so much anxiety I am usually calm but this is quite the journey. I will be glad when I settle in and then the final yahoooo of my last chemo appt. and the celebration of keeping my hair. Not to mention GOODBYE cancer. How are people touching up their roots? Does the hair keep growing during chemo? I am so glad to have found this site.

Lmflynn · January 2011

Sashette~ I know its a lot to do quickly, but you will be so thankful when you have your successes! What type of chemo are you doing? I haven't done anything with my roots... they are growing but seems to be more slowly than pre-chemo. I'll touch them up when I'm a month PFC.... my last one is Thursday!!!!

mtri111 · January 2011

New Cold caps users. Please pm me and I will happily send you some materials i worked up to help with caps use: a shopping list, hair care tips and a tips table for managing side effects.

Also.. all newly beginning caps gals.. get the electric blanket ON YOU as you begin using caps. That, and the moleskin patches are a godsend.

And to echo advice of others here.. HYDRATE !!! esp the day after; and don't get otherwise plugged up. Getiing the excess toxins out of your system is a good way to ameliorate side effects.

Also: EMEND WORKS!

mtri111 · January 2011

For nerves and jitterinesss, another EXCELLENT product is beta blockers. Milder than tranqs, very effective.. ask for Inderal (propoanolol). it is the famous "stage fright" drug. I made this discovery with advice my my internist, and it was a revelation for quashing side effects..

zlota · January 2011

Hi everyone, 4 days post my 4th treatment and 2 more to go. Still have hair but it seems like this time it is shedding a lot. I lost around the ears and if I pull them back I can tell I lost hair but I should be bald by now and I'm not. I'm scared that after my 6th chemo I won't have much hair left. I'm also loosing lashes and eyebrows any advise on this ? I've been using Latisse. I more tired now and short of breath also neuropathy is setting in, hate this feeling in my finger tips.

SASHETTE- I'm not doing anything to my hair except wash them 1/week, I'd love to do something with my roots but I'm scared. It seems to me that my hair is growing a little but very slowly I got a haircut along with my 5yr old daughter in October 2 weeks before chemo and her hair is so long already mine not so much maybe an inch since then ugh...

Can't wait for this to be over.

Sashette · January 2011

Hi I am having 4 carboplatin and taxol

Although the Dr said she would be happy to just get 3 in me.

I was a tough sell ; ).

mtri111 · January 2011

Taxotere causes less neuropathy than does taxol, but is as effective. As a professional guitarplayer, this was a key factor for me, and it worked out fine.. no neuropathy.

There is not a great deal of hard evidence for the NUMBER of treatments.. standard practice seems more historical than validated by good clinical study. I was appalled to learn of this.

I too was a hard sell, and only continued on the condition that i kept feeling good. since i did (no thanks to the information provided by the center!), i did the 6 cycles. who the heck knows... am healthy though.

jpmercy · January 2011

Zlota- two things for neurapathy that work right away!! vit b6 100mg daily and l-glutimine it is a powder you can find it at most healthy food stores. i took it day of chemo and for four days following i would put a tablespoon in my drink, water or vitemin water whatever you like three times a day for the day or chemo and four days after. i had it one week and someone told me to do this and it went away right away and then i followed this for the rest and it worked great!

Sashette · January 2011

Re glutamine..my powder dosage is 1 tspn equals 4500 mg

I have only been taking 1/4 trpn 3 times a day for fear.... yes just for fear.

what was your powder dosage? Did you experience any adverse side effects from the glutamine?

Sashette · January 2011

mtri111. I too was appalled at the lack of formal studies. My understanding is currently there are studies getting under way.. I attend an alternative / health oriented cancer group of which a member is a naturpath. He is in favor of chemotherapy which I did not expect. The coldcaps are generating much interest I am hopeful I will have a good result not only for myslelf but for the people watching locally lol... oh the pressure

Ang7 · January 2011

Hey all,

I heard there will be an article on the Penguin Cold Caps in the Washington Post next week?

Katherine~are you the one featured in the article?

About the penguin charm - I would proudly wear one...

Lucky60 · January 2011

Sashette: L-glutamine: I took about 20-30 g/day (half in morning and half at night) as powder mixed in cranberry juice for the first 7 days of chemo, then cut it to half for the remaining 14 days before the next treatment. I never had any side effects from that. I did have a little foot neuropathy (numbness) after my first chemo, but then started taking B-6 also (100 mg/day) and it pretty much went away by the 3rd treatment. (Note: I also used iced gel pads on my hands and feet during chemo--the full Penguin treatment!) L-glutamine is also supposed to help w/ mouth sores and I never had those.

BE SURE TO ASK YOUR ONCOLOGIST IF HE/SHE IS OK w/ these supplements, of course. I have found by talking to others that there are a lot of different docs' opinions on what supplements are safe, and what might interfere w/ the chemo.

For grey roots: Colormark hair touchup you can find online--you paint it where you need it and there is a little comb to keep you from getting it on the scalp--not the same as the full color, but it gets you through (note: their colors are darker than they seem; order one shade lighter if in doubt). I didn't lose any hair in the areas I used it.

Good luck! Lucky.

Julia1969 · January 2011

My oncology pharmacist recommended B6- 50-100 mg twice daily, Glutamine- 10 gm daily, and Acetyl Carnitine 1 gm twice daily to offset side effects. The glutamine is usually recommended in powder form because it costs less, but I hate powders and can take any pill. I found some reasonably price capsules at Purebulk.com. I took all of the suppliments all the time along with the stool softeners because I backed up horribly.

Lmflynn · January 2011

I take B6 and use glutamine....I started this after Tx#1 -- because I was getting tingling and numbness in my fingers and feet. Since then I started this I have not had any neuropathy. I also started using frozen peas on my hands and feet during the taxotere transfusion.

I haven't found anything to help the eye twitching.. but it is not too bad at this point... all of this is made so much better when I look in the mirror and still feel like I have all my hair... even though I have shed and have a lot of thinning and a small bald spot at the crown (not that noticeable to anyone but me)

Good thoughts to all!

jpmercy · January 2011

oops i meant to put one tsp not tablespoon of l-glutamine! and about the charm..its from the pandora collection they have them at most major jewlery stores the bracelets that you collect the charms on range in price but you can put the penguin on anything really and the penguin charm is $25. its super cute !

motherofpatient · January 2011

Good morning, we are in for a snow event here in GA along with ice. It might set up a problem if my daughter starts chemo on Wed because I might not be able to get out to get the dry ice on Tues. I have the caps in at -26C freezeer and have 10 sheets of re-usable dry ice. I am wondering if I put the caps out flat in a 2 gallon freezer bag and layer them between the re-usable ice packs, will they be cold enough to work?

We went all prepared last Wed only to face another delay but it was a good dry run with the ice. Two days later the blocks still hadn't melted even though I had the coolers outside.

We have had so many delays: the drain, seromas, cellulitis and now the need for a CT due to a suspicioius spot in the lung. Anyone else have problems getting started on chemo?

credenza · January 2011

Hi everyone,

Has heard anything about whether cold caps may protect the brain from the toxic effects of chemo? I'm not as worried about brain mets as chemo brain. I would like to save my hair, but if I can also prevent chemo brain, that would be an extra bonus! -- By the way, I'm a New Yorker and am beginning chemo in mid Feb. Is there anyone who might want to pass on their caps? Is it possible to share caps, or is that a hygenic issue?

Thanks so much for any replies!

Sashette · January 2011

I found this article. http://nanopatentsandinnovations.blogspot.com/2010/12/ucsf-tests-promising-solutions-for.html re FDA pilot study using cold to keep hair during chemo dated Dec 10

Cold Caps Users Past and Present, to Save Hair

Comments

Categories