Cold Caps Users Past and Present, to Save Hair
Comments
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Mdg- I'm 18 weeks PFC and happy to report that when I washed my hair yesterday I could tell that the shedding is less. Someone here said that week 18 was the turning point for her and it looks like it may be for me, too. I lost almost no hair at all during chemo. The steady shedding was all post chemo. No one can tell. I just know that my pony tail feels puny!
And yes, I also experienced the lack of enthusiasm about saving my hair in the infusion lab. However my Onc is thrilled.0 -
Mdg. My shedding lasted 18 weeks. To the day. When the shedding stopped it was like a faucet turning off. I have had no shedding since. I lose maybe a couple hairs a day now when I comb . That is it. Good luck!
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Thanks ladies. I know it has to stop at some point and I have tried so hard to be patient but after 4 months pfc it is getting really old. When I get up in the morning there are at least 20 hairs hanging down that are unattached...that is without combing. If I comb a lot more comes out. My hair looks full on the days I wash it like the photo I posted two weeks ago here, but it is super thin. A pony tail looks rediculous as it is so thin so I have to clip my hair up. Once it stops shedding I will use my hair extensions again and that will help a lot. For now I won't use them as I don't want anything pulling on my hair. I hope it stops in the next two weeks......
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yizbieta - what kind of chemo did you have? your hair sounds like mine, and your diagnosis is similar. I've tried posting a photo of my hair but it's not working. i'll try PMg you.
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Hi ladies, just checking in. I'm day 5 after 3rd treatment. 1 more to go! The shedding has been minimum but I had very little left to shed! I'm wondering if some loose more in the beginning and some more in the end? would be interesting to see. It does get hard to keep up all the hard work of maintenance when you have very little left. I fear that when I finish treatment it will all just shed away. I do see a lot of new hair though which is good. Chin up all you brave ladies! it will be worth it in the end
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Hi All,
Been away from site for a week and must catch up! Need some info quick. I can't locate the page someone already told me about this, so please forgive and repeat. I am about to start taking L-Glutamine for neuropothy-tried wheat grass for 2 weeks and it did nothing except taste and smell bad!!
I could only get capsules of 500mg each, so I will take 2 at a time. Do I need to open capsules and mix in Juice or water? Or can I just swallow the capsules? I remember 1000mg so that's why I'm saying 2 capsules. How many times a day and for how many days? Every day or every other day or for 3 days on 3 days off??? Help!
Keep Positive!
Nancy
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Ladies- I color my grays today (only front area). I was so scare not to get it on my scalp that I think I didn't use enough so it only cover around 50% of my grays. I will try next week again.
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keeppositive- I have the powder wihich I take 1 tablespoon twice a day. the outside of the container says 1000g on the outside. But the suggested dose is 1 scoop twice a day so I would go with what is on the suggested
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Nancy: I took L-Glutamine capsules, once/day. Didn't open the capsules, just took them as with vitamins etc. They were gel-caps, so while they were a large capsule, they were relatively easy to swallow. Hope this helps!
Susan
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Hi all,
Thanks Dexxy and sebm9,
I will take 2 capsules a day.
My oncology hospital is doing a trial with L-Glutamine for Neuropothy. I would have joined, but 1/2 the people would get a placebo and it would be a blind test. I opted out because I didn't want to possibly be one of the placebo people and waste 12 weeks on nothing.--I want to try and cure this problem for sure, not take a chance for 12 weeks.
Thasnks again and Keep Positive!
Nancy
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In regard to preventing neuropathy...remember during (and 15 minutes before and after) Taxetere to keep bags of frozen peas on your fingers and toes. For me, it was really cold and at times made my hands even shake, but worth the one hour of cold pain to prevent neuropathy. It worked. My nails and fingers and toes are fine. Also, suck on ice chips during chemo to prevent mouth sores and lessen taste issues.
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Dexxy and Mdg: I stopped shedding about 2 mo PFC, but I lost a lot of hair DURING chemo. So maybe things just happen over different periods of time for people. At any rate, it DID stop and now I lose maybe 3-4 hairs total when I wash and comb, less than before chemo I think. Underneath where Iost it, it's growing in curly like Shirley Temple!
Keeppositive: I took 2-3 g/day of L-glutamine for neuropathy, but I used the powder and mixed it with cranberry juice. It seemed to help during chemo, although my hands and feet still are a little stiff & hurt sometimes. I also used gel pads on hands and feet during chemo, after the first treatment anyway. I think it helped with my nails as they have never looked better! (I also took silica tablets for hair and nail strength).
Lucky
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Lucky-thanks- I'll keep my fingers crossed, I'm praying that since I've already lost SOOOO much there won't be a big shed in the end.
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Hi Ladies just checking in hope everyone is hanging! 5 months post chemo!!! My hair is thin but still mine!! Going for my second color today! I am thinking of trying some clip in extentions to make my hair fuller--(the new hair is about 1 1/2 --2 inches!) It just needs a little boost--anyone else try this! Hang in there ladies--I know it is hard--keep a positive attitude!!
Love, Sharon!
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Hey Sash, I tried the clip-ins and they were OK, but went to glue-in extensions w/ my very trusted hairdresser AFTER I stopped shedding, and they've been fine. She put one on each side (underneath) and they help fill in a lot. Still wearing them til the underneath hair catches up. Have to replace about every 5 weeks (but I don't wash my hair a lot) as they start to get loose. They are real human hair in a close shade, they blend pretty well but you can color them also.
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Hi Everyone,
Went for my reg every 3 week Herceptin infusion yesterday. Asked about the L-Glutamine and they told me the test is for 10 grams 3X a day for 3 days a week then nothing for 4 days then back to 10 grams 3X a day for 3 days for 12 weeks. My capsules are 500mg. 1000mg=1gram. I would need to take a ton of pills, so I'm off to get the powder in 10gram strength or a large quantity of 1000mg strength.
By the way I iced my fingers and toes with frozen gel "peas" during chemo (it was much harder to take than the caps) and I sucked on ice pops/fudgeicles/italian ices all during chemo. The mouth stayed good as to sores, but still had lousy taste till a few months after chemo. Icing the fingers was good, but toes still got neuropothy. Nails not so hot, they keep breaking and peeling, but never got discolored or black.
By the way, has anyone experienced this? After the bad taste went away, and it was the worst with RAW Veggies and Fruits, cooked was okay, but ater that all cleared up, when I eat raw veggies, like salad, my mouth feels as though the food is "TOO BIG" in my mouth. I can't really describe it, but it feels strange. Anyone else experience this?
BTW, to those girls who said the caps made them sick and that they smelled, I don't think it was the caps, but the meds that made you feel that way.
Keep Positive!!
Love to all, especially those going thru treatment! I found that a positive attitude made everything work for me!
I'm having a big birthday party this weekend for about 40-50 people. It's a celebration of Life, not really a birthday party. I'm really doing it to thank all those who called me every day or every week or helped me with my treatments or drove me to treatments or took me out shopping or to a movie or a special "girls night out". It's really a party to thank them all for helping me to go thru this ordeal. My birthday was just a good excuse to get them to come!! And yes, I have a lot of friends and a few relatives that were there for me too!!
Nancy
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Keeppositive - I like your idea of the party to thank all those who were there for you during treatment etc... I also totally agree with you that having a positive attitude when going through this helps alot. When i was diagnosed and was feeling sorry for myself and down and depressed, my brother in law came over, gave me a big hug and told me you have to have a positive attitude, having a positive attitude releases positive energy and will help you going through this. And surely it does. So thanks for the reminder:-)
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I'm With Snoopy-Positive Attitude does make a difference. I know when I go to the infusion floor and a I see women with mean angry faces I understand but I think to myself its not helping you, turn that frown upside down and think of a happy place.
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Hi all,
Nancy/Keep positive. I like the idea of having a party- will try and get all my helpers and other support people who helped me get thru the process together I still have possibly rads, 6 months more of Herceptin infusion and breast reconstruction surgery but I do have my hair
To those who are experiencing negative comments from nurses, onc's etc:- I got a lot of that and I am a RN. One onc told me I was "lucky" to have kept my hair because the technology doesn't work generally. I informed her that the technology has vastly improved from 20 years ago and to read the European oncology journals stuides. . Re talking to the nurse manager, that manager may or may not be supportive. In fact, I found the nurse manager the most oppositional to using the caps. I personally think it may be more effective to visit the nurse educator (if there is one at your clinic), the oncologists, the patient advocate and perhaps the medical social worker. I think some medical professionals are still very skeptical - they need to have it approved by the FDA before they will believe it and even mention it to their patients as an option. . If we want more people to have this as an option we may have to push ie suggest to the the medical community to do more clinical trials here in the USA.
Question to those of you using L glutamine. If you already have neuropathy ( I have it in bottom of feet and finger tips ) and am 6 weeks PFC. Does L glutamine make the symptoms decrease? What helps if you already have it.? I used cold on my feet and fingertips during the TC part of the infusion but still got numbness and tingling (like walking on block of wood). Also does L Carnitine help? . When should you take L Carnitine and/or L glutamine? Thanks for info
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Ladies, I took L-Glutamine powder (5,000mg) during treatment, and still do.
"it helps to prevent mouth sores and digestive upset. It should be taken for 3 days before and during chemo treatments. Chemo works on disruptimg cell division in cancer cells, it also damage the cells lining the digestive tract, because they have a faster turnover rate than the most other body cells. When 4 grams of L-glutamine are used twice daily in a mouth-wash that is swished and swalloed, both mouth sores and diarrhea are significant reduced. Vitamin E oil applied directly twice daily to mouth sores will shorted their duration"
The complete natural medicine guide to breast cancer-Sat Dharam Kaur ND. -Dr. Caroline dean,ND,MD
9 weeks PFC still shedding.0 -
Serenitywisdom- I didn't have neuropathy, I guess L-glutamine helps. I also took B-6 for nails and hair. Used frozen peas on my toes only on my first treatment.
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I too took l glutamine throughout chemo - 20 grams per day for the duration - tc x 4. I still take it now 4 weeks pfc but only 10 grams per day and will take it until I run out. Along with it, I iced my fingers and toes during chemo. Fortunately I did not experience any neuropathy.
This info is direct from my Integrative Onc on l glutatmine dosage: powder - 20 grams per day days 1-7.
If mouth becomes sore dissolve 5 grams in 2oz warm water and swish for 2 minutes, then swallow. Do this 4-6 times per day.
If symptoms last longer than week after chemo cycle, increase amount and length, up to 30 grams per day every day.
After chemo, continue taking 10 grams per day for a full month after treatments.
Note: l glutatmine is an amino acid, you can count 1/2 your l glutamine intake towards your protein total.
Like Tiki, I also took 200 mg B-6 as I read it was an aid to prevent neuropathy.
Nancy: I did not have my taste altered either. Sorry I cannot comment on that. I did suck ice chips while being infused with taxotere. The only thing different is that I craved salt for a few days.
You know, I also took probiotics during chemo. Not sure if this helped my mouth or digestion or both. We are all so different. Did you have tc x 4?
Love your idea about the party!
Everyone: Regarding the scales/crusts and flakes..... I washed my hair today, second time this week due to scalp build up and extreme itchiness. I figured itching and scratching was worse than washing as the follicles are so fragile that multiple strands were falling out every time I itched. I washed with giovanni tea tree oil organic shampoo. My scalp feels clean and does not itch. I figure this is better in the long run so that new hair that is ready to grow can sprout forth.
My integrative onc suggested I rinse with rosemary tea to boost circulation. I am a little hesitant to do this just yet as I am shedding quite profusely right now, but will once shedding subsides a little.
I am not at 4 weeks pfc and still shedding. I would say I preserved about 60% of my hair to date. Wishing everyone all the best and continued success.
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Amazing Women we need your help. According to Frank if we are having problems with dandruff flakes, crusty build up and even sores (if left untreated) we need to use a shampoo that has a pH level between 4.0 and 4.5. We need to regain balance by purifying the scalp and removing build up and crusts. When I ask him if he knew any product with these conditions he answered: "Google it". I did my research and I could not find any. Do you have any recomendations?
He also said that we could add 1 or 2 drops of vinegar to our shampoo to add acidity (well, I kind of need more specific instructions, but...) Finally he said something about using or not using moisturize shampoo ???????? As you can see by then he had already lost me!!!! I will email him and call him again, but English is my second language and I am having a really hard time understanding him. I keep you informed.
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Well I just did a little research regarding shampoo and using a shampoo with a ph of 4-4.5 seems as though it would be a clarifying shampoo. For example Head and Shoulders has a ph of 6.0. That shampoo is far too harsh for a Cold Cap user, plus isnt organic and I am sure contains sulfates.
I did find a product by Giovanni called 50/50 which restores ph to the hair, where the shampoo works as a clarifier and a hydrator at the same time. I just do not know what the ph level of the shampoo is. Giovanni products are organic.
I did look into a vinegar rinse, but one has to be careful as vinegar should not be used on color treated hair. At least that is what I read on the net and who doesn't have color treated hair these days.
As I posted in an earlier thread, I used giovanni tea tree oil shampoo. So far so good in terms of scale and itch. I will post back in a few days with progress.
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I'm using phmiracle shampoo, it doesn't say what is the ph but it is alkaline. I have just a little bit of flakes, when I wash my hair it feels clean, but only for 1 or 2 days.
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Yes, B-6 200mg Daily for neuropathy prevention.
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I've used Pure Results shampoo from Regis Salons. I dilute it. Works great. Gentle and I've had no buildup.
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The surface of a strand of hair is covered with overlapping sheets, somewhat like the scales on a fish, or the shingles on a house. This surface is called the cuticle. Alkaline solutions raise these scales, so they stand up.
Alkaline shampoos are considered above 7.0 on the ph scale. Natural shampoos are with a ph of 4.5 to 5.5 on the scale. If we have a "crusty scalps" is because we have "too much alkaline" so we need to use a high acidify or low ph shampoo 4.0 - 4.5 to regain balance.
I was using Pure Results but I can't find its ph balanced and it's a moisture shampoo and Frank said to avoid them?????? I also have DermOrganic Conditioning Shampoo ph balanced 4.5 -5.5. I am waiting to Frank response if I should add 1 drop of vinegar as he recommended since I can't find a shampoo with a lower ph.
Thank you for your help.
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I've been away for a while but had my last TC a week ago and I am so pleased to say that my hair is virtually all there. I barely lost any and have also had none of the problems related to scaling, itching and flaking. I have said on here before that I use Burt's Bees shampoo and conditioner but I think someone else tried it and had problems with tangles. But for those of you considering using PCCs, I am here to say they work!
Unfortunately, I am now losing considerably more hair than I did during chemo. I washed Tuesday and lost quite a bit for me. It helps to know to expect this thanks to everyone's comments here. I guess the cumulative effect of the chemo is catching up to me a little. Frank told me to start taking silica so tomorrow I will be on a mission to find it at a health food store.
As for the neuropathy, I also did not experience that. I took the L-Glutamine the first two times but did not the last two times. No icing either. I just couldn't stand to be any colder.
I am now the proud owner of two humongous coolers and a super duper thermometer. If there is anyone in the east bay who would like them, please PM me and let me know. I hope to never need them again!
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serenitywisdom: L-Glutamine will help allieve your neuropathy symptoms. I also strongly recommend acupuncture, for neuropathy or any other symptoms you are having -- even psychological, mood, energy, pings and pangs, you name it.
sashasz3: congratulations!! Yourhair will be zooming back and full in no time.
momof4girls: congratulations to you too! I may know someone who could use the gear, she's not sure of her course of treatment yet. If you find another taker, that's fine, but I may PM you if this woman ends up needing chemo (and caps).
Susan
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