Cold Caps Users Past and Present, to Save Hair
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Hi ladies checking back in, day 3. Yesterday was a humdinger. My 9 month old puppy Scarlet became very ill and we had to rush her to emergency. They think she ate something toxic and its been touch and go. All night test and charcoal and IV. She's a bit better but we are waiting till 5pm to see if she can hold food down. I think I lost another handful of hair just from stress. They my Nephew who lives with us came home at 3 am with a tow truck and his new car of 2 days! totaled. I can't take much more of this. thanks for letting me vent
feeling better today, yesterday was my down day but it could have been all the s**t! Still have hair, still shedding but not as bad. As far as the question, we can not change the temp., 5C is the lowest since we are part of a trial. They may lower it after the trial. I've seen women super successful with the cap and have had very little post chemo shed. We shall see. I still think cutting my hair was the right decision. It just tangled while looking at it before. now I comb through with fingers in the morning, and clip up then comb through lightly in evening.
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Ralston: Did your treatment place believe the cold caps would work? My doctor was not informed and believes that the caps might not work. However, he supported my decsion to give it a try!
Keep it postive: That is interesting that your doctor said no to all vitamins. My doctor is allowing me take Biotin, Biosil, Maxi-Hair Vitamins, and fish oil. Vitamin C , Milk Thisle and Cat's Claw were not allowed.
So far my stomach feels okay. I just don't feel like myself. I can exercise. The more I do, the better I feel. Although I am so happy to be using the caps, I have anxiety about the shedding process and wish there was more info about how to minimize it. My hair is fine and the idea of losing any is painful. I know i need to keep things in perspective and that in 6 monhts from now, I will be back to myself.
I hate cancer
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Hi ladies: just checking in 5 days PFC. Washed my hair today, the last 3 washes I shed a 2/3 snack size baggie. Too much for my fine shoulder length hair. My scalp feels very tender today. Had it clipped up and felt like the clip was pulling out the hair at the roots. Had to dash home from an errand to take clip out and readjust hair to comb over extremely thin spots.
I just hope the shedding does not continue at this rate. It's disheartening. At this rate I look forward to new growth and baby sprouts all over my head. They cannot grow soon enough!
Regarding supplements, my onc did not want me taking antioxidants like vitamin a, c, e etc. I was allowed to take fish oil, magnesium citrate, biotin, silica, iron, l glutamine, msm and multi.
Also now that I'm done chemo, i have been looking into foods that help hair grow. Cucumbers ladies, they are full of silica, in addition cabbage and red beets help as well. Adequate protein is important too.
As soccergirl stated I too look forward to 6 months from now, when all this is behind me, new hair growing and I feel like me again.
Hugs to Frances and Dexxy! Dont give up, hang in there.
Yizbieta: how is your hair doing? You should be 4-5 weeks PFC.0 -
aug7, Debrox thanks for the encouragement. Need to push on -- with or without hair. cancer sucks big time.
My onco also said not to take antioxidants in case they interfere with chemo but he allows me to take probiotics for my tummy and 'Lingzhi' - a mushroom extract which is known to be anti inflammatory.0 -
dexxy sorry to hear about your bad day! It's as if we do not have enough headaches on my shoulders dealing with cancer! Praying for a speedy recovery of your dog. Hope your nephew didntt injure himself in the process. Leave the car to theinsurance. Don't worry and stress yourself.
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Soccergirl - My treatment place do not have an opinion about the Cold Caps. Admittedly, the eradication of cancer and other life-threatening diseases is an ambitious goal - one that demands tenacity, scientific excellence, collaboration and breakthrough creativity. The priority of the world's greatest minds collaborating with the Cancer Research Centers in the world is to reach this ambitious goal, so they really do not expend a lot of time dealing with side effects that are not consider terminal or consider "cosmetic". In few words, saving my hair is not there priority, but saving my life is. Of course my doc has never seen anybody on DD A/C and DDTaxol that has kept her hair, so it will be interesting to see what she"ll say if I reach my goal. The reality is they couldn't care less if I used or not the PCC, but they are okay with me using whatever makes me feel happy and positive which is the best medicine of all.
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soccergirl: so much you are going through all at once! Glad you've found out about PCCs. Send me your email and I'll send you my writeup about my experience; diet and exercise are extremely important in managing potential SEs, in helping detox quickly, and in keeping your nutrition up at the various recovery stages of chemo.
Best,
Susan
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I never knew my scalp to be so fair, almost white:). I am tan as I have always been active and get lots of sun here in Singapore. Just didn't think scalp will be so white, so I look a little funny - white head on a brown body. Hahahaha
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Good to hear you laugh Frances! Sending a big hug
Scarlet (my puppy) is home and resting, it was touch and go, but they were able to flush her system. We snuggled all night, I have 3 French bulldogs, without them on this journey I would be lost. Today is wash day, urgh the fear......
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Hi ladies, hope your sunday is good. Dexxy, I am glad your puppy is well and better:-) am sure eit was scary for you. Hope your nephew is doing better too. Take it easy on urself girl:-)
Frances - I am sorry for losing your hair, uurrgghhh cancer SUCKS big time!!! I hate it!! but we will fight it and get over it!!!! this too shall pass.
I am day 4 after my 2nd TC treatment, hair still hanging on (short on the back, long at the front:-) the front is shedding but there is also alot of new growth that is still hangin so i am praying that it sticks around:-) I've been covering my head with a silk scarf all weekend, i kinda style it to cover the front and the back hair is hanging somehow:-)
Okay ladies, have a good remainder of your weekend.
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How much L-Glutamine did you take? Thanks!! I'm very interested in finding out more about alternative ways.0
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Hi All:
Glad to hear your puppy is doing better Dexxy and as someone else said don't worry about the car, you can't fix it yourself so let the insurance take care of it.
My motto throughtout this ordeal has been, I come first and my survival is #one! All else is secondary. I don't waist my energy and emotional strength on anything other than essentials. I don't worry about small things, they don't matter anymore! I try to keep upbeat and stay away from negative people and feedback. Don't worry about your hair, it will hang on even if you loose some on top or on the sides, you wont be totally bald and it will grow back faster than if you were totally bald.
I did the caps at home in between treatments(which were every 3 weeks).I used them 3 nights a week for 2 hours, out of my regular freezer, so they were only -10 degrees celcius, but they promoted hair growth and my hair grew alot during chemo. I did it while I watched TV and used a neck pillow for comfort. I didn't need an electric blanket, because it wasn't that cold. I did it usually on Mon/Wed/Fri evenings for 3 weeks and then the usual 7-8 hours on chemo day. I continued for about a month after my last chemo, until I forwarded the caps to the next user in my area. I reccommend it--it worked for me.
By the way--I have been trying a treatment for the really bad neuropathy I was left with during and after chemo. I have been drinking liquid wheat grass(tastes disgusting-If I put it in orange juice and it is okay). Someone told me they did it for 3 days and got rid of neuropathy. So I am trying it. After this(if it doesn't work) I will do Vitamin B complex and then L Glutamine or vice versa. Don't know what strength to purchase in those two or what dosage to take. Help anyone?
I think I am noticing a little improvement in the neuropathy after two doses of the wheat grass in 2 days.
Keep Positive!
Nancy
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keeppositive: Thanks for the tips on neuropathy. Perchance have you tried acupuncture? I found it to be hands-down the most effective thing in addressing my SEs, especially but not limited to neuropathy. And the results were immediate. I'd never tried it before, but it's part of my integrative medicine program at my cancer center, and I was an instant convert. I still go for regular "tune ups" though I'm more than one year PFC.
In addition to acupuncture, my nurses also strongly recommended L-Glutamine, as well as icing fingers/toes during the infusion. I did all these things. (I did pretty much anything anybody suggested, as my attitude was I was throwing everything at my cancer battle. That's still my motto!) My nurses did okay my use of Milk Thistle, which I know is not a given. I also took Vitamin D (was on a megadose).
Hope everybody had a great weekend. Everybody maintains such positive attitudes here; I sometimes look at other parts of the breastcancer.org website but I always find such a positive outlook here. I'm convinced cold caps make a huge psychological (and actual physical) difference in this battle.
Susan
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Hi Soccergirl - my oncologist was fine with me taking fish oil, a vitamin B complex, vitamin D and calcium (with magnesium) and a priobiotic. I did Taxotere/Cytoxan. I have heard alot about milk thistle for liver health, but my doc wanted to hold off on that one till I was done, as it has a detoxifying effect.
I have had pretty good success with my hair (last chemo 7/21). I don't know if the supplements helped with that, but my skin and nails are actually doing great. I had zero issues with discoloration or thin nails. They are longer and stronger than prechemo - go figure.
I am also a strong believer in accupucture. I think the liver is what really helps with hair health (and of course processing the chemo!), and that is an area that accupuncture can target well. My person also would try to stimulate blood flow to the scalp, with needles on my neck, at the base of the hairline, kind of behind my ears.
Frances - so sorry Dignacap let you down.
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thanks ladies for the sweet wishes - Scarlet is a happy puppy again. The nephew is physically fine other than needing a kick in the butt.
Hair is hangin on and I think the shedding has slowed down to a minimum. Hoping for new growth, i can start my juices and supplements today, that will help. I don't take any the day before treatment, and then for 3 days. It makes sure they don't interfere with the chemo.
LGlutamine - 1000g by Jarrow its a powder and I take 2 TBSP a day one morning one evening mixed with some almond milk. No neropathy
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LoriBS: I took 20 grams of l glutamine per day, days 1-7 post chemo. This was recommended to me by my Integrative Onc. I purchased Jarrow brand in powder form and mixed it into water.
KeepPositive: I did not experience any neuropathy. I am now officially 1 week PFC. I did take l glutamine per above. In addition I took and still take b complex that includes 100 mg B6 and 500 mg B5. I also iced during taxotere infusion so I am not sure if this prevented neuropathy or not. But like Susan I threw every weapon at preventing neuropathy. I wanted to start accupunture, but was worried it would aggravate the cording, possible LE in my surgery arm. I have yet to resolve the painful cording that is preventing me from simple activies such as yoga or lifting super light weights. Extremely frustrating to say the least!
In addition I have heard great things about wheatgrass and I drink it occasionally - GAG as I hate the taste.. But I do drink "green lemonade" regularly, containing kale, apples and lemon. Kale is known to help the autonomic nervous system and improve circulation. I can attest to the improvement of circulation as I slipped and fell in the shower and ended up with huge bruises on my backside, back and legs. Within 7 days of drinking green lemonade, my bruises had vanished. Normally they would have lasted 4-6 weeks, they were very deep purple bruises.
Dexxy: Glad to hear the puppy is well. And glad to hear shedding is down to a minimum.
Susan: I couldnt agree more about the ladies here and positive attitude. I am sure it has something to do with the feeling of empowerment at a time we have lost so much control. Cold Caps enable us to focus on our bodies. They contribute to keeping us active and somewhat "normal" during an incredibly difficult time.
My poor hair still shedding quite a lot after last infusion and scalp feels tender. I hope it slows down as I know I still have the day 18-24 shed on the horizon. Then on to regrowth. Ironically like Tania, my nails haven't looked better, they are healthy, pink, strong and growing like weeds They are far better than pre-chemo, probably because I was forced to look after and maintain them. But since hair and nails are related, I can only hope my hair starts growing like a weed once I am past the next heavy shed.
Actually what is preventing it from growing right now.....bring it on!I have been taking biotin and silica throughout chemo. I am now juicing 1/2 cucumber a day it is supposed to help hair growth due to high silicon content. Hey anything that helps.
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Taniak Congratulations on completing your treatment! 7/21/11 was the first day of my first infusion. I am glad to hear that you were successful with the caps. It is hard for me to predict what to expect because each woman's experience has been so different. I am day 11 post first infusion. My side effects so far have been very strange. Since my first chemo experience I only sweat under my right armpit when I go running/walking. The left side is where I had one lymphnode removed and now it appears that I no longer sweat there, but on the right side I now sweat buckets! Also, my feet blister so easily now. I am using the moleskin that was for my face for my feet. My stomach feels bloated most of the time. Thankfully I am not sick, but tummy feels like a foreign country. Can't wait to be done! Thanks for your post.
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soccergirl: I had that one-side-only sweating thing happen too! Plus, when my body hair did start regrowing, it was nearly a year before I needed to shave under my treatment arm. It still doesn't grow quite as much as the other side, but both sweat equally now. Bummer.
Funny you should mention it!
Susan
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Well gals ... i'm finally done. Today was my last cap day!! Woo hoo! Can we change the name from PFC to something that doesn't use the word chemo??? FS - Fresh start. I'm day 1 FS.
And Ralston- i just finished 4 DD AC, 4 DD TAxol. THere's hair on my head. It's flippin ugly hair, but it's hair. It looked great all thru AC. After second taxol it really started to shed. I still have full coverage, just very thin. I got thru 14 weeks of chemo with hair on my head. That's definitely a victory!!
Hugs to all of you that listened and offered advice. This was a great place for me. We need a FS protocol. All of you have so many great suggestions. Wish it was all in one place. I"m overwhelmed now!!!
thanks again gals! Pam
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Yeah so happy for you LivCar! Here's to a great FS!
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YEAH Livcar!! You are finally on the road to recovery and FS! I'm right there with you!
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Way to go Livcar!!!!
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Livcar: CONGRATS!! You did it! That's great news!
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Hooray for you Livcar!! You did it and you still have hair. Just keep babying your hair and it will all grow back in, healthy and new. Keeep using only organic products, wide tooth comb, cool water gentle washes and soon you'll be there with a full head of georgeous hair!!!
Keep Positive!!
Nancy
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Congrats! Huge accomplishment! Shows you have a lot of determination and endurance. I see that in a lot of you.
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Congrats! Huge accomplishment! Shows you have a lot of determination and endurance. I see that in a lot of you.
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Congrats! Huge accomplishment! Shows you have a lot of determination and endurance. I see that in a lot of you.
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Here's my morning after thoughts. Part of Day 1 FS. Here are the good things that happened during chemo: i learned who my friends were, i realized my husband really meant it when he vowed "better and worst", i learned to live in the moment and do silly things - especially with my kids. New people entered my life. My high school girl friend, now breast cancer biologist stepped in and took over my treatment and everything to do with the caps. She picked up ice, bought everything and was in charge! I also learned who were NOT my friends. Boy - that'll save a lot of cash at CHristmas!! My nails grew longer and stronger than ever. My skin was great ... maybe all that water? i didn't have to shave my legs, or underarms. My family thought I was beautiful with only 20% of hair left on my head. Half grey, matted to my head - my hubby still wanted to get me in the sack!! poor guy - it's been a long few months! Anyways. In honour of my DAY 1 FS. i'd love to hear your stories!! Tell me something good that's come out of all this. I"ll end with one of my most special ... meeting all of you!! onward ho Penguinistas!
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Starting cold caps and chemo on august 16 (AC x 4, taxol x 12) - lots of questions! WOils appreciTe any guidance:
--I know you're not supposed to wash hair a few days before and after chemo, but can you wet it? What about conditioner or detangler? I have curly hair, and it's going to be impossible to comb if i don't use something.
--recommendations for shampoo and conditioner, and where can I purchase?
--what about styling products (see above re curly hair)
--what exactly is latrisse, and where can I buy it?
--any recommendations for deodorant (or better, antiperspirant ) without aluminum that actually works? Where can I purchase?
--did any of you go ahead and purchase a wig in case your hair did fall out or get really thin?
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Another PCC success story....I am one month PFC and have 90-95% of my hair (TCHx4). I used/am using Burt's Bee's shampoo and conditioner and washed twice a week due to having very greasy hair. I also switched to Tom's deodorant. For lashes and brows, I started using Latisse 2 weeks before chemo. I still have about 60-70% of the lashes and still have brows, though very thin. I'm hoping they hang on. When was everyone comfortable using mascara again? I haven't used it since starting chemo because I wanted to baby them.
Chemo made me so sick that even looking at the caps in the freezer turned my stomach. I used the caps in between treatments for the first treatment only, then could not bear doing it in between anymore.
My advice for anyone starting, if you think you will be sensitive to smells, don't use your favorite fragrant products during chemo. I bought some wonderful paba-free moisturizers that I used through treatment and now can't stand to use them because the smell makes me sick!
The expense, pain, and hassle of the caps were well worth it. I kept my treatment hidden from co-workers and though my hair looks like I 'let it go', I still look like Me : )
To everyone who has posted on this site, I thank you. All of you helped me get through the worst time of my life and were an inspiration to me !! Good luck and good health to everyone !
Question: For any blonds out there who prior to chemo only highlighted their hair, did all of you wait the full 6 months for highlighting again? My hair stylist said she could highlight without peroxide but I assume that's still too harsh?
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