Cold Caps Users Past and Present, to Save Hair
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Chemotherapy Survival Guide:
Hi everyone, I finally found the book I've been referring to for months, "The Chemotherapy Survival Guide" (third edition). Authors are Judith McKay and Tamera Schacher, nurses at my cancer center. The book is published by New Harbinger (www.newharbinger.com); available in paper copy and e-book.
I can't recommend this enough. It's like having a couple of good friends sitting in your living room holding your hand, walking you through in no-nonsense terms. I constantly read through the book for advice, esp. the nutrition chapter (can you tell? :-)). It's loaded with practical suggestions, nutritional advice, integrated therapies. Softbound, priced about $18 but mine was free at my initial appointment. I recommend it without hesitation.
Chapters:
- What is chemotherapy
- Understanding Your Treatment Plan
- Understanding Blood Tests
- The IV Experience
- Preventing Nausea
- Coping with other Digestion Changes
- Coping with Fatigue
- Coping with Hair Loss and Skin Changes (okay, so THIS chapter needs an update!)
- Coping with Nervous-System Changes
- Sexuality
- Fertility
- Mind and Body
- Relaxation and Stress Reduction
- Preparing to Start Chemo: A practical guide
- Life after cancer treatments: Being a survivor
Susan
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For nausea my daughter gets Aloxi IV during chemo so she doesn't have to pay the prescription co-pay which is seperate from the medical and not uder the out-of-pocket cap. For 2010, insurance paid $93,000 - just insurance part of bills. So far this year not including recent filings, they have paid $62,000. Yikes!! and we still have more chemo, a DMX and reconstruction with all the follow ups, Tamox or AI, and follow up onco visits along with 8 months of herceptin.
It shouldn't cost so much to get treatment.
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Everyone is so smart here...such good recommendations! I struggled with extremely dry skin. I went to my dermatologist and switched my entire skin regime from an oily approach to an extremely dry skin approach. I am using a bunch of products all directed for people that have skin that is close to excema. It has worked great. But the first weeks of change were shocking to me, as I have never had a dry flake of skin in my life...
It really helped to be at a derm office, where the person working with me had already worked with a ton of chemo patients. But it was EXPENSIVE!!! I initially tried Eucerin...vaseline...coconut oily, but it all felt too greasy on my face and pillow. Plus my hair was ending up more greasy in the am.
Also, attended the Look Good Feel Better class by the Amer Cancer Society...it was great. I also got $250 of free products with great advice. I recommend taking the time to do this...it can be a bit awkward to have hair in the class. However, I made the point of grabbing a cold cap and doing a mini-lesson to the four people that put on the class, since they could not believe I had hair.
Hope this helps!
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Susan, thanks for the Tamox info; a couple other friends said they had little side effects and DO IT so I will pick up my script today...it's interesting what you say about sugar and hot flashes;I'll experiment with that.
Funny about the dry skin problems--I have dry skin and some wrinkles normally and my skin actually looked BETTER during chemo--soft and smooth, people even commented on how good I looked. It's reverted back PFC unfortunately!
Also, I ate pretty much everything I wanted, as normal, during chemo, without problems. A few days post, everything sort of tasted like baby poop, but it didn't last long.
And my hair is still doing pretty good, 3.5 mo post final chemo. Just normal shedding, still thinner than before, but looking healthier and more normal. I think the new growth is a little darker and straighter (?) than before. Eyebrows and eyelashes have grown completely back, maybe thicker than before! Lucky
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Morning ladies and Happy Friday:
I'm using Lindi Skin products but they are expensive and I think the Aloe is probably a good way to go. After the Lindi products are finished, I'll probably switch to something else. I too went to the Look Good Class.
On another note, because of the heart palpitations my Oncology Center now wants a release from a cardiologist before I can continue to have the Herceptin. Yikes, I hope that I can continue with the Herceptin.
Arlene
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Hi All:
Thanks for all the suggestions. I will look for the book and try to find the Look Good Feel Good Class. I will call my Dermotologist and check out the Lindi skin care products. Thank you, you guys are great, you have a lot of knowledge, especially when you are all combined in one place.
Keep Positive!
Nancy
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Arlene
I had heart burn with my first treatment, but was told to take Prilosec daily for the entire chemo process. It helped a great deal. I didn't have heart burn after the first treatment.
Colleen
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I too had heartburn on chemo day and the day after and the prilosec did the trick...it was gone after on pill. As far as the Look Good Class...I skipped it because I heard they don't even give out paraben free makeup. I switched to all natural stuff so skipped the class. I was also worried I would feel uncomfortable being the only one there with hair and figured it may be awkward. I have really dry hands and have to put on lotion so much....it seems like the natural hand lotions just don't work as well but I still slather it on several times a day. I am 6 weeks into chemo and my brows are starting to thin....thank God for brown eyeshadow and brown eyeliners to fill in the thinned spots. I am using lattisse on the lashes in case...so far they are still there and I have not noticed any issues yet....who knows when that will happen. It seems like many of you lost brows/lashes after chemo....who knows how it will go! My head is still full of hair though....I have had shedding which freaks me out but I still have hair so it looks OK (other than not being styled correctly or washed as often). I tried using the hair scrunches to pull my hair back but they seem to heavy and pull on my hair more than light, covered hair rubberbands so I just use the rubberbands and am very gentle. I don't really see shedding when I take them out or anything. Did everyone lose lashes and brows? If so, when?
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Hi again ladies:
Well, it sure looks like Pepcid and/or Prevacid for me. Chemo #2 isn't until 4/21 and hoping it goes better.
I should know by that time what is up with the hair as it will be a bit over 3 weeks.
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mdg -- You are right about the Look Good/Feel Good class. The products are not paraben free, they are what ever has been donated by cosmetic manufacturers. I did go and got some nice stuff, as well as lotions that I won't use. As for it being awkward to be there "with hair", that wasn't a big deal because not all women have cancers that required chemo so their treatments did not cause baldness. And it was a chance for me to promote the PCCs.
I lost my lashes and brows AFTER chemo! It was 2-3 weeks PFC. Surprised me. Lashes came back over the next several weeks and the brows are still thin. My brows were very thin & light before chemo. The chemo was hard on my corneas and I haven't been able to wear my contacts. My glasses frames cover up most of my eye brows so I haven't thought much about them.
Colleen
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I got lucky with the class and got a lot of organic and paraben free things at the class. A lot of Clinique and even Aveda. All the girls in our class had completely different things in their little packets. We also got free wigs and still hoping I don't need it. No one was interested in the Cold Caps though.
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Nancy,
the skin products are LIndi.
they have a website. it is expensive stuff but it i made for chemo isues and is fanasatic. A year out and i still use it.
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Question - did anyone have the shedding really slow down at TCH #5 and 6? Happening to me and am still waiting for the "big shed". I know that I have to wait weeks for the shedding to discontinue, but how long? I have 16 days to my last chemo. Then do I wait weeks/months for it to stop?
Thanks!
Annie
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Anniemomofthree~
If I told you that I am a year out from chemo and I still look at my pillow when I wake up to see how much shedding has occurred would you think I was crazy?
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oh my....i think that will be me too. thanks for the honesty!
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Hi everyone,
Just an update on the cold cap usage (elasto gels), Today is day 17 post first treatment, had a lot of shedding on day 14 that got progressively worse, showered today and it just seems to be steady, no clumps but heavy shedding, I have really thick hair and I don't think my scalp got cool enough underneath. Time will tell.
My son who is a rock star with waist length hair wants to buzz his if I have to buzz mine, he knows this is the time frame 17-21 days, he called me today and wants to come home tomorrow so we can buzz together. I told him, I will not buzz even if I have only one strand hanging,
I think he's disappointed, I think he is looking for a change. I told him to come home anyway and we can donate his to Locks of Love. Not sure what he is going to do.Interested in how other elasto gel users are doing.
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Hello everyone:
Annie: I think we are neck-in-neck. I have 12 days till #6 TCH. My hair seems to come out the most when I comb it--especially since #4 and #5. It seems like clumps of 10 or more hairs come out everytime I comb it even though it is with a wide tooth comb. I guess the follicles are so weakened by 5 treatments, they are hanging on by a thread. It probably isn't noticeable to anyone but me. What is noticeable is how crappy my hair looks--no style, large streaks of grey or white, limp, lifeless strands just sitting there. I would never have believed I would leave the house looking like this, but get a different perspective and everything changes!!
I think my eyebrows are thinning, but it is hard to tell. It may be that they have turned partially white and they just look bare in spots. I need to check with a bright light and a magnified mirror.
However all other bodily hair appears to have vanished.To any new Penquin Cold Cap future user out there in the greater New York area who will start sometime in May:
I can forward my caps to you, with Frank's permission. You can post here or private e-mail me and let Frank know. If anyone will be doing Chemo at New York Weill Cornell, let Barbara know and I can leave the caps there for you. I will let Frank and Barbara know that I am willing to forward the caps to the next user.
Keep Positive
Nancy
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LeeAnn:
You and I are on a pretty close schedule. My first TX was 28 March so today is day 14 and no shedding at all. My scalp is tingley and itchy but I think it is because it is dirty. Tomorrow is hair washing day and hoping that helps with the itching. I've been using the caps twice a week during TX too. My hair is rather thick too but the Elastos sure don't go down low enough in the back so I'm sure I'll lose the hair there.
BTW, the Ear Pops are wonderful!
Arlene
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keeppositive: You are almost at the finish line! I'm excited for you. It has been awesome to talk to you through all this. I felt the same about my hair after 4TC -- Frank says that those of us with thicker, coarser hair lose a little more (don't know if that is your type of hair) -- but next time you go in you can walk in with your hair (which almost none of our docs and nurses have seen before!!) and then say you are DONE with chemo. I'm going to try to count down, but remind us when your last day is coming up.
I was able to hand off caps to a woman in my area -- who in turn helped me coach one of the women in the UCSF clinical trial (my neighbor up the street, no less). Amazing in that few weeks, it went from practically unheard-of to clinical trial status in my neck of the woods.
leeann56: hang in there! My fingers are crossed for your success. Those of us with thick hair have more hair to shed, so it could be noticeable to you but not to the rest of the world. With PCCs, I lost at the nape and above the right ear -- classic places for loss -- but just focussed on the top, crown, and hairline. I lost my widow's peak briefly, but it came roaring back. I think the Elasto-Gels warm up more quickly than the PCCs, so should be swapped more often (from what I've read here on the list). Thanks for keeping us posted! Btw, your son *rocks*. (I used to be in the music industry and have a special place in my heart for musicians and all they go through.) He has your huge heart. You have a fantastic circle of care, one of the most important elements in treatment.
Susan
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Leanne, Here's hoping it goes better for you since you had a bad start with the Advance Caps that got too warm too quickly. My daughter had those same caps for her third treatment and lost a lot of hair. She did not do the second day cooling after chemo 2, 3, and 4, so she is very lucky to still have hair. On chemo 5 and 6 she wants to do a longer time with caps after chemo and will definatley do the second day caps. Still, it is better than no hair at all.
What this experience shows is the importance of well maintained caps used as directed by Frank and the shorter change times for the elasto gels.
I think another issue with the EG caps is that we need to put a buffer of some sort on the top of the caps to keep the top from getting so much colder than the sides. I did test the Penguins and they too had temp variations of the sides.
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Good morning! So many great comments...I wanted to support the statement that those with thick hair (or lots of hair) shed more. I read on a reputable hair site that blonds have about 130,000 follicles and brunettes have fewer (can't remember the #) and red-heads have even fewer. So the blonds will see more of the individual shedding.
I have seen a lot of shedding, esp at the beginning, but I have touched the hair less and less and it seems like there is just simply less to shed! I am down to days (I can't believe it!!!) like Nancy for TCH #6. My hair has a gray line which I color with Colormark. I have not washed it in one week and will probably do it tomorrow. We went to the keys for vacation and the little bit of sun helped perk up the face and hair...I don't feel the urgency to wash it, which is different from the beginning of this journey. I also have used hair styling products to smooth it and have dried the hair with a warm/cold dryer. I am betting on the fact that the wind blows through my hair everyday...so why not a wam/cool dryer. I also curled the ends - for aout 5 seconds to get rid of the fly-away in about three spots on my head. I feel a like "a cold cap bad girl"! But, I think my hair looks good!
It is really hanging in there and I really do not mind the "new look." I do not use the caps between my TCH. I do use the eyebrow bands - and just recently tweazed the overall eyebrows for a slimmer look. Heck, they were disappearing anyway. I have not used latisse, I am dapping some eyeliner in those vacant lash areas. Looks fine. And, I am putting on bright pink lipstick which always looks like spring!!!
Love the support from the rock star son...though I think you are going to make it through just fine. It is amazing how quickly things go by....
Happy Day everyone....we are all making progress! We are survivors! Love to you all!
Annie
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Gee Annie & Nancy almost there!! Congrats on the soon to be finale----I am now 2 weeks out--the hair seems to still be shedding--every time I "gently" comb I can actually hear them pop out of their follicles---wish I could see some regrowth! Soon I hope---does anyone really know when to expect regrowth? Or when My skin tone may stop being so pallor?? Started rads--just one down on Friday--didn't know if that keeps you pale as well--Have a great rest of the weekend!
Sharon
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Hi everyone, I'm the patient of motherofpatient. I lost a lot more hair after THC #4 but I still have a lot left. I'm two days away from TCH #5. Here is how my hair is doing at day 81. The inset photos are my hair before chemo.
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Steph - your hair looks fantastic! And I am sooooo impressed by your use of technology. What a gift for all of us to see. I keep looking at other people at the mall, church, grocery store and they are walking through life each and every day with thinner hair (and no chemo to thank for it). We are all so lucky to have hair during and post chemo!!!!!
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sashasz3: Your color will come back! Gradually, but faster than it took to lose it. That 3-week PFC is when your body starts to adjust from the shock of chemo; just remember to keep hydrating and exercising because you're still detoxing. The faster you get that junk out of your body, the better it is for your whole system. That said, respect your fatigue and your body's need to nap. (For myself, my battle with chemo was so intense, that I had to re-frame my mindset for each of my following steps: rads, tamoxifen. I have to remind myself I'm still going through treatment, and be kind to myself.)
I spent so much time outdoors while going through chemo, that I didn't get that palor until I went back to work part-time and wasn't outside so much. Regrowth is different, but you'll probably notice it first around the temple/ears/nape and/or any places where you lost the most.
Steph42: Seriously, it is really hard to tell which are the before and after pics! Wow. What is the response at this point when you go for your treatments?
Susan
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Hi Penguinistas & other cold cappers~ just checking in. Hit the 12 week PFC this week. I have been taking biotin and B6 since Tx#2....have to say my nails are better than pre-chemo, and my hair is thin but feels healthy and ALL hair is coming back full force! All of a sudden this past week I noticed underarm hair. And complete coverage ..i havent noticed sideburns and hairline, but i have blondish hair...and wonder if it were darker I'd notice this too.....so for Sharon, I do think it's different for everyone, but the "Big Grow" for me happened in the last week to 10 days.
Steph, I'm with Susan...I can barely tell any difference!
I want to share that I think it's fine for me to take a warm shower now, but I can't bring myself to do it. I'm in the shower and start to put my head under a warm spray and this strong aversion comes over me....like NO, you may still lose your hair.....it's incredibly strong. I guess sooner or later I'll believe 100% but completely appreciate Ang's comment. Losing your hair during chemo is sooo much a part of the process I think I'm afraid that I'll jinx my good fortune!!!0 -
hi everyone,
i was considering the caps, but got a bit scared after watching the abc special with robin roberts and the suggestion or possibility of cells in the scalp.
do you mind sharing your thoughts? did/do you have that fear too? is anyone using the caps have ac as part of the treatment?
thanks for responding.
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Hi Everyone:
Stephanie: Your hair looks fantastic! I wish I knew how to take a picture to show you all what short hair looks like--no where near anything as nice as all of you with long, thick, straight hair.
To everyone: You don't have to take cold showers, just wash your hair in cool, not cold water. In the shower, You can avert the shower head or wear a shower cap. When you wash your hair, take a warm shower and don't get your hair wet. When you are ready to shampoo, turn the water to cool and avoid your body getting wet. Hava a pail or cup or pithcer and wet your hair with cool water from the container then put shampoo in it and dilute it, with a little water, pour over your head and gently push the shampoo through your hair. Repeat a 2nd and maybe, if necessary, a 3rd time. Rinse with cool water using the container between each soaping. Don't get your body wet with cold water. When hair is thoroughly rinsed, get it away from shower and turn up the water to warm and rinse your body in warm water and step out of shower, warm. I use a towel gently wrapped around my head to absorb the excess water and then I either air dry or blow dry on cool. Usually I put sponge rollers gently in hair to get a little fluff and height-Very Little! There is no need to suffer with cold showers.
How long after my last chemo do I have to continue cool shampoos and no color or cuts? When can you do 1st color with gentle color without chemicles?
I am going to a "Look Good/Feel Good class next Thursday.
My last chemo is a week from then on Thursday the 21st of April. (Hooray!!)
I have to say this ordeal was far less than I anticipated. I think the caps diverted my attention and made the chemo go more or less unnoticed.
At any rate, good luck to all you just staring this journey, and just know it has an end, and it will come soon. I am almost at the point of looking back and that feels good!!
Keep Positive and Keep Laughing!!
Nancy
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Today a friend who is a breast oncologist told me she will have her patient call me to learn about PCCs. Another man at church is a neurosurgeon and today told me he has talked to and is going to have the woman who teaches the chemo class at the hospital where he practices call me and wants her to know about and tell the class about PCC. I've been telling people at every opportunity about PCCs and am so encouraged that maybe now the word is getting out.
Friday is my last chemo. Yippee! Each time has been stressful using the cold caps bc we haven't had the support of the chemo lab. But we've gotten it done anyway and I have all my hair at this point! I'm the first at this major medical center in Dallas. Soooooon ready to finish chemo and get on with exchange surgery and be done with these expanders! :-).0 -
Determined3 - This has been an ongoing discussion item - there is a lot of information on this thread that has already been written. It would be great if you could simply review the material that is out there. Go to the search button and put in cold caps and any other words that you are interested in.
Best of luck with your decision.
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