Cold Caps Users Past and Present, to Save Hair
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Dancetrancer,
You sound like a pro already! Don't worry about the Dr. or other naysayers. It just slays me that on the one hand they encourage you to take charge of your health and well-being (and psychological well being counts with any disease) and when you do i.e. hair loss, you get at least mild crticism for focusing on "temporary" hair loss (except it's not always temporary - and we all know that). Just keep your chin up, keep doing what you're doing and try to be gracious when you prove him wrong:).
Lucky
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Hooray Dance. My nurses were so very curious too and they all came quite often (they gave me a private room) to check on me and they were so supportive. After Chemo #1, my doctor was amazed how much hair I had left and said if you haven't lost it by now (at that point I was there starting #2), she said I wouldn't lose it but that it would thin but I'd not go bald and she was so right. Each time after, she would run her hands through my hair...so encouraging. Nice to have support and your doctor will get there too.
Congrats! Arlene
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dancetrancer...glad to hear everything went well for your first treatment. I was a nervous wreck the first time. It gets so much easier and less stressful as you go on.
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Well, all, I did develop some side effects. The most concerning one is popping and ringing of the ears. It started about midnight the eve of my chemo. Ringing not as bad today, but has been there constantly since it started. This most likely is due to the Carboplatin - it can damage the inner ear, but it is not common b/c Carbo typically cannot cross the blood-brain barrier unless a specific drug is injected into the vertebral or inner jugular artery to open up the barrier. I have to ask, though, did any of you experience this after wearing the caps? I wonder if there could be some interaction - inner ear getting too cold/or vice-versa, too warm compared to the scalp so more blood/drug goes there...or the fact that at one point one of my straps was too tight around the back of my left head and caused a throbbing sensation - obviously a vein was being compressed - we released it...I'm not blaming the cold caps...may be no relation and all totally due to the Carbo...but I would be remiss if I didn't explore a possible interaction or cause from them. Share away!
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dance, I did not experience any ear ringing issues, and I don't think I have read about anyone on this thread having experienced them either. I know I have read about it on some of the other threads though.
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Dance,
I didn't have any ear issues either - good luck.
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My 31 year-old daughter had her 2nd treatment on Mon., April 9th, and she is having really bad headaches. She describes them as "piercing through the top of her head". She is constantly taking Advil, and she's also doing acupuncture, which she seems to think is helping a little. I haven't heard say anything about her ears, but she does get very nauseous about half-way through the cap-changes, and has had to have additional Phenogran for both chemo treatments, which knocks her out. She is so tiny (110) pounds, and she's freaking out a little because her hair is shedding so much. I keep telling her not to worry, that it's normal to lose some hair... but at least she won't lose it all. Good luck with your treatments, and hope your ear issues get better. Hope you are using the mole-skin on your forehead and ears, and the gauze on top of your head.
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Thanks all. yes, I am using the moleskin, etc., etc. I highly doubt the ear ringing is related to the cold caps, as I said, but just wanted to see if anyone else had by chance had an issue with it. Portishk I hope your daughter begins to improve - I had my treatment Tuesday. It's rough stuff.
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Hi. I am not using cold caps but am icing my fingers to try to avoid neuropothy ( I am a violinist). I have a quick question. How long do you ice? I started today and iced from the start of taxol and iced in the car ride home.
Thanks for any input?
Lynda
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LyndaMarie, I'm not sure if many of us iced fingers, but I think several did on the "taxotere, carboplatin, herceptin" thread.
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portishk, Is your daughter taking Zofran for nausea? That can cause headaches. Tell her not to worry about the shedding, I am sure she isn't losing as much hair as she thinks she is. Tell her to hang in there, chemo is tough, but she will get through it.0
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Dance: Yep, I had the ear ringing too and believe it was from the chemo. That chemo attacks everything....even the bones about my ears hurt. I think that means it is doing its job! Hoping your SEs are minimal.
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Hi LyndaMarie, Quite a few women have iced their fingers/toes. My nurses advised to ice my fingers and toes to prevent neuropathy, and also advised beginning acupuncture treatments even before I had my first chemo treatment. Most nurses suggest icing during the taxotere/taxol portion of the treatment, as that's the one most associated with neuropathy. The chemo is active in your system only during the infusion; after that it is a waste product and the goal is to detox it as quickly as possible from your body -- flushing with fluids, exercising, etc. Those of us doing the cold cap treatment are doing that very actively. My nurses advised drinking 1 oz of water for every pound I weighed, every day, to flush the chemo from my body.
Btw, my icing method was to get little ice gel packs (for lunchboxes) and put them in orphan socks I had lying around my sock drawer. Used them on my hands and feet (took them off my hands when I had the cap changes ever 30 minutes). Other women hold a bag of frozen peas in each hand.
Hope this helps,
Susan
ps: I also took L-Glutamine for neuropathy, at the advice of my nurses, as others have mentioned.
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Susan - Thanks! Helps alot
Lynda
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LyndaMarie - There is some limited research that neuropathy can be prevented with the use of supplements, specifically vitamin B6, L-glutamine, and acetyl-L-cartinine. The mechanisms have something to do with coating the nerve sheaths and protecting them that way. Do a search for this on the boards and you can learn more. I will say though, that with taking supplements, you need to know not all known side effects are fully known/tested - so do your due diligence. I myself did all 3 for my first treatment - no neuropathy...but I did develop ringing of the ears (which most likely is due to the Carboplatin)...but part of me is wondering if there could have been some unknown interaction with the supplements. I have no way of knowing. I still may go back on the supplements for my next treatment, b/c neuropathy is so scary...just know that when doing supplements, there are many unknowns.
I was told to ice fingers and toes 15 min prior to taxotere, during tax, and 15 min post to prevent nail lifting issues. I'm not sure if the icing has any impact on the risk of neuropathy or not...not sure if the nerve damage occurs locally (where the ice would affect it and help prevent it) or if it occurs more remotely...I believe I read somewhere that the damage could be happening actually at the level of the spinal cord where the nerves originate. If so, icing the toes/fingers would not have any benefit. Even so, I still ice!!! The benefit of preventing nail issues alone is huge. I also chew on ice/eat popsicles to help prevent mouth sores.
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LyndaMarie,
I had 4 rounds of taxotere/cytoxan and did not ice my fingers and toes. I did take B6 supplements, as advised by one of the nurses. I am approaching 14 weeks PFC and have had no neuropathy in my fingers - no lifting of nails anywhere. I did have some strange tingling sensations in my feet the day of my fourth and final round of chemo - and for a few days afterward - primarily at night after I went to bed. But that quickly resolved itself. I'm not advising not to ice - I'm just saying with my experience - I had very few - and apparently short-term issues. In retrospect - I may not have taken the chance on it - and if I had to do it again with more rounds of chemo (i.e. more than 4) - I would definitely ice and take B6 just to be safe. I have such naturally cold feet and hands - that the idea was horrifying to me at the time. However, the idea that the tingling I had after round 4 woudl be permanent is even more horrifying to me - so I wouldn't risk it again. Good luck, Lucky
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LyndaMarie, I did ice finger and toes during taxotere only ( and about 15 before and after) I started after the first tx ...because I did get tingling and numbness in both after the first tx....since then I did not have any issues with nueropathy. I started L-glutamine after first tx too....so not sure if it was icing or supplement or both?....but it worked for me.
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Good research dancetrancer! I like to see that. Do you have any links about the possiblity of origination at the spinal cord? My understanding is the icing is to prevent nail discoloration and lifting which can be painful. The glutamine is to prevent neuropathy.
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makingway - this article (which I haven't read 100%) goes over the possible mechanisms of pathogensis of chemotherapy induced peripheral neuropathy:
The parts that caught my eye so far:
Postmortem studies of patients who had received chemotherapy with cisplatin found highest concentrations of the drug in the dorsal root ganglia.10 Damage to the ganglion is thought to be responsible for permanent symptoms.
and...
In most cases of CIPN, damage seems to be mostly concentrated in the sensory fibers. This may be partially explained by the anatomical location of the dorsal root ganglion. It is difficult for most chemotherapeutic agents to cross the blood-brain barrier, and cell bodies for motor nerves are protected by their location within the spinal cord at the anterior horn as compared with sensory neurons whose cell bodies are located away from the cord at the dorsal root ganglion. Also, within the peripheral nervous system, motor nerves tend to be more heavily myelinated than the smaller diameter sensory nerves. Myelin may serve some protective function against axonal damage. ' Symptoms tend to effect the distal upper and lower extremities (stocking-glove distribution) because the longest never fibers have the largest surface area, and are therefore more vulnerable to damage from chemotherapeutic agents.3
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Hi everyone,
Just wanted to update everyone since I am now 8 months PFC and using cold caps. My hair has now been colored x2 and I have cut it twice. It looks good albeit a little dry. I am still using parafen and sulfite free shampoo and conditioner. My eyebrows still are very sparce and I am having to pencil in the areas in the brow where there is no hair. I used to have pretty thick eyebrows. The powder brush on eyebrows works pretty good. My eyelashes are sparce. Blinc works well. I am now starting to use latisee again to see if I can stimulate growth on eyelashes and eyebrows.
Best news- After 15 months I finally got my tissue expander exchanged out for a silicon implant, the other breast reduced and lifted and the port taken out this past monday. Surgery was cancelled several times due to herceptin impact on my heart but NOW everything seems ok and . I look like a teenager. While I was in the hospital this past Monday and Tuesday, I told several nurses about keeping my hair during and after chemo. I think that having my hair made it much easier to deal with the other issues re the chemo.
For those of you considering icing fingers and toes along with wearing cold caps, I wish I had done that with every treatment. I still have neuropathy on the bottom of my feet from the chemo and wonder if I had iced my feet from the very first treatment if that would have happened.
This whole journey is a long arduous process at times but having hair has definitely made my spirits rise.
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serenitywisdom: congratulations! It is great to hear how well you are doing.
Susan
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Serenitywisdom,
Congratulations! I'm so glad to hear how well you're doing. it's always a thrill to see the reactions of hte medical staff when you tell them about the cold caps (with a full head of hair!). Frankly, my RS seemed more interested than my MO. He asked me a number of questions and told me that he was going to make sure that all of his bc patients heard about it going forward.
I had my TEs replaced this last Monday - and boy what a difference! I'm curious about what you're doing on nips - I'm debating the whole recon vs. 3D tats issue right now - please PM me with your thoughts if you don't mind.
ON the hair - I found the most wonderful product for dry/chemo hair (which has plagued me for several months and I'm now nearly 14 weeks PFC) - it's called macadamia natural oil deep repair masque. I got mine at a beauty supply store called, Beauty First. I was a little skeptical about what the clerk was telling me - but desperate enough to try it - and to my surprise - it really helped give my hair a little more life. You may want to give it a try.
take care,
Lucky
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luckyjnjmom, I know you weren't talking to me, but I just wanted to share what I am doing for nipple recon - a prosthesis. I didn't want another surgery nor tattoo, so it was right for me. The company I am using is naturallyimpressive.0
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I did nips and aerola grafts. I am getting tattoo's soon too. I was able to have them use skin from my stomach for areolas so I got a mini tummy tuck out of the deal which was great since my son was an almost 10 lb baby and I am not a big person! I am enjoying the new nips/areolas - and flat tummy!
So glad so many of you are doing well with cold caps and post chemo hair. I just got my hair cut a few weeks ago and it was so thick my stylist had to thin it out!
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Hi All
I am a little over a year PFC and I have hair... Long hair .. YAY ! happy me...
Someone recently asked me if I had to do it over - would I do the cold caps again. No question in my mind, I would. My hair is thinner but it is mine and I get complements on my hair regularly (if only they knew what my hair and I had been through).
Upon reflection I do not think it was all about the hair for me. It was about choice.
Today is a good day and I love my messy careless imperfect ponytail dancing about..
Just wanted to share my joy!
Reading your posts daily helped me to feel not alone and encouraged. A sane place in the midst of crazy. Thank you all so much...
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YAY Sashette!!
It is a matter of having a choice and I am so happy for you.
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Hey there all...how soon after your first chemo did you notice shedding start? I am 6 days post chemo and had lots of shedding after washing my hair this morning (yes, using cool water and only washing every 3 days, combing very carefully, etc.).
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Shedding usually occurs anywhere between days 14 and 21. Many say that most the shedding happens when they shampoo. If you find you are lsoing more hair, it's likely due to the build-up of normal hair loss due to shampooing less. I noticed the same thing when I started shampooing less frequently.
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Thank you makingway - I thought it was awful early for shedding. That makes so much sense about losing more when you wash b/c you aren't washing as often - thank you!!!
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Dance, you will shed lots. Or maybe we are just way more aware of it!! Keep at it, the caps will keep your hair on your head!!
Portis, I would get headaches and mildly nauseous if I mived around a lot...but honestly, my stress level was so high, that I think it was just a combination of everything. It will all be a distant memory soon!!!0
