Cold Caps Users Past and Present, to Save Hair
Comments
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Thanks for the update, Chey! Hearing from those of you who have 'been there, done that' is so important!
Today is day 21 for me! I have minimal shedding - mostly around the area that got a bit frostbitten last time. I know this because the hairs that shed - mostly 4-5 at a time - are attached together with a piece of flaked scalp. Today is treatment #2.
Is my hair safe?????
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Your shedding might start about now. That's when mine did. My worst shedding happened between my second and third chemo treatments which is when people not using cold caps lose all of their hair. Cold caps protect the younger stronger hairs and, as I understand it, most people lose their oldest ones.
If you start to shed heavily, don't let it shake you, because like Cheyenna said, even if your hair thins alot as her's did and mine has, most people will just think you have thin hair. It sheds uniformly all over your head, not in spots. I had single hairs falling out all day long. They ended up all over the house and trailing down my shirts. People would helpfully pick them off for me which made me feel embarrassed. You will keep most of your hair. Try not to fret.
See if your oncologist will allow you to take silica for your hair during chemo as it has been clinically proved to help slow hair loss by strengthening hair. Mine wouldn't let me, but I wish she had. I am taking it now post chemo.
Best of luck!
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I'm finally starting chemo on 11/2. Any ladies at UCSF?
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What specifically silica do you mean? All I can find is the brand name silica.
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Just back from treatment number 2 and into the last 1+ hour of the cold caps. Everything went well. My DH (my helper) is frustrated by how imprecise the temps of the caps are. We base everything on checking each cap at the same place in the cap but the rest of the cap varies widely. I know there's a fair amount of 'play' in the system but it's hard to know if you're doing it exactly right!
Thanks for the advice Hortense. It means so much to me to hear from those of you who've had this experience and come out on the other side!
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301724-As I told Frank, there is no 'one' temperature of the cap. The middle is usually the coldest. Use that area for the temperature you're striving for. The sides most likely will not be as cold-that's okay, so long as they are not way off in temperature. be sure to wipe the cap BEFORE taking the temperature reading because the frost impairs the reading.
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TLYM, im at UCSF, though i ended treatment Nov 2010, my PS, and ONC, are there
Chey0 -
Take Silica, i swear by it! Specially if your on Taxotare!!!
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301724, yes i'd say your safe, Frank told me by day 23 ... What treatment are you on? Remember cold water rinse, and you need to drink a ton of fluids!! Your shedding will continue through out your treatment, dont worry
its going to work
3 After my A/C (the total hair killer, the red devil its called) i had a full head of hair! Had i been able to stop chemo there, i would not have even known i lost any.. I had 12 more taxol treatments so it kept thinning, i wanted to do dose dense taxol (8 stronger doses rather then 12 lighter doses) i would have had a lot more hair when done!!
Chey,0 -
Cheyenna - Congratulations on doing so well! You are an inspiration. Thank you for coming back and posting here.
What form of silica are you taking ? Pills or liquid? And how much? I am taking five drops a day of a liquid form of Silica called BioSil as I had read that liquid is more easily used by our bodies. It's too early to know if will make a difference.
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30124,That is perfect!! Good for you!!! You are sooo correct!! There is a higher risk of not getting your hair back on Taxotere! I believe it has to do with the natural Silica your hair produces, among other things.. Taxotere is extremely hard on it. A/C is not as known for that, (but can still happen) the A/C does not attack the natural silica your hair produces..... The Silica helps to replace what the chemo has taken as i understand..There are many other reasons why your hair might not come back buts its more health related.. Taxotere is a newer treatment drug,part of the Taxol family, its been around about 10 years now. Not one Dr that i spoke to told me that it had a higher risk... Very unfair..i know women that have been on it and sadly never came back! They were not even giving the option of the caps!!
I have a friend who did not want to use the caps, her ONC as well as my ONC scared her so much about the risk of scalp mets!! she opted not to use them.. I didn't listen and i refused to let them tell me i couldn't!!
Chey0 -
Chey~
It is so good to hear from you again!
I am 3 years out and my hair is down past my shoulders.
I feel so grateful to Frank and his team for the PCC's.
They made chemo and my life with young children doable during that time.
Hang in there all...
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ANG7,Hey lady, hehe wow!! i missed ya baby!! Im great, all is well.. So nice to hear from you! what a road we traveled
my hair is soo much thicker, and i was thick to start with. Thank goodness Frank Fronda took me in for all this. He tracked me cause of the A/C .. It worked!!! Hehe
Chey0 -
HORTENSE, i used the gel caplets i took 9 a day, 3 in morning, noon, and night! Did you take it durning chemo? Taxotere, i assume, you 4 treatments? Maybe 6? When did you finish chemo? Im asking because you said it was too early to know if it worked?
I still have chemo brain, im sorry if i misunderstood
lol
Chey0 -
My ONC told me i would not be able to save my hair! Specially being on A/C. No way! Just like MERMAID said, my ONC said " im here to treat your cancer, im not here for your beauty needs" Bitch!! I dont care i said, if i cant use them ill go somewhere else and if they say no, ill find a place!! She let me use them.i was the first up here in No Calie my second opinion DR told me the same, "it wont work you will lose all your hair on the A /C !but u can try, i went with the Bitch ONC, when it worked she said " im impressed"
2 hours away at UCSF, they started trials, when i went there for a reconstruction PS, and a new ONC after my treatment, they were so impressed!! My new ONC had others come in to see. They were more shocked that i was on A/C and it worked. 16 treatments of chemo.blew them away. It was so nice to have a place that wanted to hear about it!!!0 -
Thanks to all for the help and encouragement! Yesterday was treatment 2 (out of four) with Taxotere and Cytoxan. Using the caps was much smoother this time. Used strips of gauze over the front that had gotten red/tender/extremely flaky from the first time. My MO was delighted to see my hair (yesterday was day 21) as were the nurses. Fingers crossed! Everyone is talking about having me give seminars, etc when this is done. Exciting but hard to have so much riding on an N of 1. I'm the first one at my center to use the caps.
Did ice my fingers yesterday (much more uncomfortable than the caps!), chewed ice during the Taxotere, and got a prescription for Latisse.
Two treatments down and two to go. So glad you're all here for support and help!!
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Way to go 301724! Hope you rest and feel great.
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Thanks! BTW - to all past users - did you cold rinse every day?
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301724 - Good going! Icing while wearing cold caps isn't easy, but it will be worth it. I have had zero problems with my nails or neuropathy on my hands and my feet. I am so glad your team is excited that you still have your hair.
Cheyenna - I had four T/C treatments and finished on July 10th. My doctor firmly told me not to take anything during chemo so I didn't. I started BioSil about a month later. I took it for about three weeks then had GI problems and stopped all vitamins to try to clear them up. I have restarted vitamins one by one to see which might have been the guilty party. Maybe it was just a parting gift from chemo as I haven't had any issues since. I plan on talking to my doctor about silica when I see her next week.
I understand it takes about three months before any effects form the silica can be noticed.
What was the dosage of your gel caps? I have seen several versions of silica all with different dosages. Geralyn from Penguin recommended 500mg a day, but it was in another form. Mine is lower at 10 mg, which is what the clinical studies of the liquid form used. She had no idea what dose would be right for a liquid form, so I am sticking with what the studies used.
BioSil, which I am taking, recommends a 5mg per serving (five drops) taken 2 times a day for a total of 10 mg per day. BioSil's silica is "choline-stablized Orthosilicic Acid ( ch-OSA) which is quite different from horsetail forms of silica capsules.0 -
I used Latisse on my eye brows, my are so dark, i would have really look bad had i lost them, i did once a day. Was not worried about eyelashes, now i wish i would have used it on them as well, they came back thinner. Im starting Latisse again for some legnth
Chey</p>0 -
I'm not so sure that using Latisse is a good idea... It works by accelerating growth of the lashes. Because of this, there is a possibility it can make the lashes fall out faster! I heard this explained by a world renowned oncologist and it made sense.
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Good point!! But also they r being pushed out by new ones growing? .i used it on my eye brows though, i was very happy with the results. Its what makes each of us feel better. I just would have look really strange without mine...
Chey0 -
according to the makers of latisse, it works by lengthening the anagen (growth phase) of your eyelashes. SInce they don't fall out as early as they normally would, they grow longer and more of them are present at a time, making your eyelashes ( or eyebrows) appear fuller.
It is the exact same medication as lumigen which is prescribed for glaucoma, which is how the side effect was observed, so be careful not to actually get it in your eye as it will affect the ocular pressure. Another common side effect is dry eye.
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How do the the PCC freezers work during treatment? I am helping someone else who decided on the Elasto-Gel due to budget restrictions. She'll have about an hour to re-freez each cap during treatment (she will have 5 caps for her T/C treatments).
Would each cap have time to re-freeze in the freezer during treatment, or will she need dry ice?
I am asssuming that with PCCs you only wear each cap once on day of treatment and don't have to refreeze?
Her center has one of the freezers for PCC's, and I just don't know what to tell her in terms of using the freezer. I had to use dry ice.
Thank you!
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You will definately need dry ice. You can put them in the freezer 2 days prior to chemo. Once she has used each cap they will need to be re-cooled in dry ice. Put the dry ice in a zip bag, but don't close it all the way or it will pop. Dry ice goes from a solid to a gas-no liquid phase. Fill a 2 1/2 gallon Hefty zip bag half full of dry ice and break into chunks about 1/2 inch-1 inch size. Place this inside the Elastogel cap which is also in good contact with the dry ice on the outside of cap as well.
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You do refreeze with the PCCs. I have 8 caps. Between premed, treatment, and 4 hours post treatment, I use about 14 caps. We have two coolers with dry ice in them. Found out today that we could return the dry ice we didn't need. That was quite helpful in cutting cost.
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Stayinhappy, I am using PCCs in a facility that has a freezer. Each cap is used only once, because they won't get back to the required temperature quickly enough in the freezer which is at -41 C. The dry ice is much colder, so I've heard, and refreezes the caps quickly.
As of today I've finished 6 of 12 taxol/Herceptin weekly treatments - so happy to be halfway through chemo! And with ALL my hair!0 -
I have a question. I went to the PCC website and the cost is listed in pounds....can someone tell me in dollars what it runs. Right now my onc is recommending 4 rounds of Taxotere/Cytoxin starting 11/5. Thanks!
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School mom, the exchange rate varies daily, but when I paid in September it was about $1.62 per British pound. My charge for the deposit and first month of caps, 750 pounds, was $1,217.50. Then my credit card charged a $72.35 foreign transaction fee, which is almost 6%.
. I forget how much of that initial 750 pounds is the deposit, but I will get that back when I am finished in December.0 -
So is the risk worth it? I know there is no guarantee it will work. No one local is using the caps unless I go downtown and talk to someone at the Methodist hospital. I guess I could do that and see if someone local could help me. I cant find anyone on the boards that it did not work at all.....only some that said they had thinning.
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