Cold Caps Users Past and Present, to Save Hair
Comments
-
Re: leathery skin post rads
Moisturizing with a thick, rich cream got rid of that feeling and I feel and look soft and normal again. However, if I skip a few days it starts to come back - so I moisturize!
A radiation doctor at a breast cancer symposium I went to in April suggested it to me when I spoke privately to him about the cardboardy/leathery feeling skin. He said to be aggressive about moisturizing as it can become a problem if not taken care of. No one had told me that before.
I found and use "Yes to Carrots Body Butter". It comes in a low flat jar with a screw on top which I get at Target and also at Rite Aid. Yes to Carrots is delightful, smells good, feels rich and really does a good job, and has no bad chemicals in it. Occasionally I use pure cocoa butter, but it doesn't work as well. Thinner lotions simply do not do the job.
0 -
Yes, I concur with Hortense. Continue to moisturize regularly after rads. I do and my skin looks good. It's just the feeling I have inside. Perhaps I have that sensation stronger b/c I was radiated after MX (close margins)...less tissue to take the radiation?
I did not burn bad. Only got close to red with a tiny blister or two the week after rads, then it all healed up perfectly.
0 -
Thanks to Hortense and Dancetrancer too. I am rethinking my fears about rads. Nice to know it can be handled.
0 -
I did 6 weeks of rads and used aloe, biofine (Rx) and pure emu oil. I had a little raw spot on the lower crease of my breast towards the end but it was no big deal and healed quickly after rads. I didn't notice any leathery skin or permanent changes. There was an area on my axilla that I was not aware was being treated that I was not moisturizing and that area got redder towards the end but not permanently. I would recommend asking the techs to draw the treatment area so you can know where it is.
0 -
did anybody using cold caps keep hair for first treament and then lost it? or lose substantially more 2nd, 3rd, etc. treatment?
0 -
Eeeek! Last chemo was early november, I still notice it shedding, mostly when I comb through it after washing it, even though I really try to be gentle. Anyway I pulled it back in a clip this evening while getting dressed to go out. This particular clip I used to use to hold part of my hair, I could NEVER come close to using it for a pony tail.
All of my hair easily fit in this clip.
Why???!!! Is this because I lost more than I realized, or is my hair thinning from the herceptin/tamox/chemopause???
Thank God I did the cold caps, is all I can say.
0 -
aef - Everyone using cold caps seems to keep all of their hair up to the second treatment which is usually around the 21st day after their first chemo infusion. Keep in mind that those not using cold caps would be entirely bald by then. Hair without using cold caps seems to fall out during the second week after that first infusion, if you read through chemo threads on here you will notice that. My first onco doctors told me firmly that I would be bald in two weeks after my first Taxotere/Cytoxan infusion.
Fortunately, I found out about cold caps a few days after being told that unwelcome news, decided to use them, switched doctors and hospitals in order to do so when the first doctor refused to allow cold caps (her hospital has since changed its policy on cold caps) and am glad I made the effort.
Shedding starts about the 18th through 21st days after the first chemo infusion and is worst after the 2nd treatment through the 3rd treatment before it lets up, though shedding may not stop. Mine didn't. There is usually extra shedding right after the 3rd and 4th treatments from the chemo hitting the hair follicles. We lose our oldest, weakest hairs. I think I lost a couple of hundred hairs each day during the heaviest shedding periods, which, out of the 100,000 or more we have on our heads, was not really that much. Hair always seemed to be trailing down and dropping off all day long.
Some people also lose entire patches above their ears because their caps did not reach low enough or their ears protected that area and the chemo got to it. I was lucky and did not lose any there thanks to my helper who was very experienced with cold caps. She knew how to wrap two frozen gel bands around my head below the caps to cover areas the caps did not because I have a big head. I continued to shed steadily for four months after my last chemo treatment before it stopped suddenly. Others shed for shorter periods or do not shed afterwards at all.
While my hair did get thinner, I probably lost 30 - 35% of my original volume, I always had full coverage and no one would have been able to guess I had just gone through chemotherapy. I think my after chemo photos are on page 306.
Cypher - Are you taking a liquid silica? I do and have a very thick growth of new hair, amazingly so. My hairdresser has been so impressed through watching the growth that she and others at the salon are telling their clients with thin hair about it and suggesting that they use it.
I highly recommend liquid silica. It has been clinically proven a number of times to be absorbed better than silica in capsules and to grow thicker and stronger hair, so is not an old wives tale. I posted a study on it zillions of pages back, but have no idea where anymore so can't direct you to it.
I use BioSil which I get on Amazon. Five drops morning and night in a bit of juice. I also take Biotin 5000mcg in a capsule. Both are good for hair.
0 -
My onc refused to let me take silica. I had NO SHEDDING at all until my last week 12 of Taxol been lightly shedding this week day 10 post last infusion chemo. but like i saids its very light. Also I never kept my caps on (per my docs orders) more than 1 and 1/2 hrs after the infusions, per my Docs recomendation(the penquin people ar not doctors and have no medical training Doc says there is no need to wear the cap any longer that that). I'm at UCSF in San Francisco same place Susie Q went to . They are handling clinical trials along with Cornell university (NY) for the Digitana and are flooded with requests form women all over america wanting to come to San Francisco for the clinical trials with Digitana. On a lighter note, I fianally found a deodorant that works by Deodomom! Its amazing! I'm so happy not to smell ripe anymore! Any one know how long after chemo ends the stomach pain goes away and we can stop taking senna?
0 -
LeslieVilla - You do not take silica during chemo. You take it afterwards. My onco wouldn't let me take anything during chemo, either. But she said it was fine to take afterwards.
I almost called about the Dignicap clinical trial also, and seriously considered flying out there, but when I had the opportunity to use cold caps at NY Hospital I went there rather than delay longer while figuring out logistics. Also, I had read on here that Dignicaps were not as effective and so I had reservations about them. There was a woman who used one or one like it, maybe it was the Penguin version of circulating cold, at my center and sadly it was not effective. My helper said that not only did it not get cold enough, it apparently hurt the poor woman using it. I believe she said it was too tight and painful and couldn't be adjusted.
The woman was down the hall from me when I went back for my last Neulasta shot, but I wasn't allowed to see her because she was very upset and in tears. I felt so sorry for her as she had almost rented Penguin Cold Caps and could have taken over mine when I was done. She had emailed me some questions about my experience with them as she tried to decide what to do. I did not feel I should write her afterwards to ask as she seemed very uptight and private. I do not know what her outcome was.
0 -
Hortense, I have been taking the silica, but haven't been super consistent with it. I'll get more and try to be better at it. I was wondering what others' experiences have been.
0 -
Hortense-- thank you so much! that was the most complete account of the process that i have read. i did see your photos before; that was very helpful. thanks for posting.
i am day 14 post 1st treatment, and i keep looking at my pillow in the morning, curious to see if the cold caps are working. (nothing yet!) i will now wait for day 18, then following the 2nd tx next week.
i thought of going to NY for the Dignitana trial-- it seems so much more rational a system. i am very curious to see the results. i heard there is a third trial site in NC?
those who have been on this forum for a while-- is there any clear picture about why/when the caps fail or when women just decide to stop usng them? is it user error? is it that people just quit when they start shedding, expecting to lose all their hair? do people lose too much, if not all their hair, and then stop?
such a great resource here! thank you.
0 -
I've been away on a much needed vacation and it was nice to forget about all things breast cancer for a while. I start radiation next week.
I've been catching up on the posts. I think it's important to remember that not all people follow the shedding pattern laid out by Hortense. I had 4 rounds of TC and hardly shed at all until around the 4th treatment. It started out slowly and the shedding actually got heavier after I finished chemo. I continue to shed 8 weeks PFC but still look like I have a full head of hair. Fortunately, I had a lot of hair to begin with. Since I've been on this forum, I can think of only two women who were not satisifed with the results from cold caps and quit using them. In both those cases, the women were on chemo regimens other than TC which tend to be much harsher on your hair. Although using the caps requires a lot of effort, I actually think it's difficult to fail because of user error. If you follow the basic protocol, keep the caps cold enough and tight to your head you can expect decent results.
Aef, you're right at that scary time when you wonder if the caps will work and I remember it well. When you get to your second treatment and still have hair(assuming every three weeks) you can be confident the caps are working to some degree. I haven't heard of anyone who made it to the second treatment with hair only to have it all fall out later.
0 -
jc254 - I agree it's important to point out that there are a few of us with different shed patterns. I too had four rounds of TC. I had a really big shed just 11 days after very first treatment which was nerve-wracking... and another big shed after the second treatment. Since then there has been a constant, but much lighter, shedding. I am two weeks PFC. My hair is much thinner - but I do have coverage except for the small bald patches over my ears.
0 -
I also think that some people are not following the hair treatment proticol as much as others and that could impact the results. It seems that those that use PCC's and have TC mostly all have success. I have not noticed many women that have failed with TC and PCC's.
0 -
mdg - I believe you are right. My onco doctor has been keeping track of all of the women using cold caps at her center, and there have been quite a few, and she told me that those who have T/C do better than those who have ACT.
jc254 and kaydee - I agree with both of you that shedding patterns vary, though I don't know why. Maybe our individual biologies has something to do with it as much as how well we follow or don't follow the protocol. That's probably not a scientific term, but I do think we all differ somewhat. I do know that my onco nurse told me to expect shedding to start between the 18th and 24th days and mine did. As my center had had over 40 women use cold caps by that point, she'd seen it happen many times and could be certain. Beyond that, she wouldn't speculate, probably because we do differ so much.
0 -
21 days PFC and no real shedding (I have the type of hair that will alsways leave some in the comb) so I am calling this a success!! I think the hair above my temples is even starting to grow back.
Radiation starts next week and I have my aloe lotion and my udderly smooth so I am ready to go. My radiologist recommends minimum lotion, but I am taking that with a grain of salt. I think you really have to be your own guide sometimes. They also say only Tom's for deodarant, but I really hate to stink (don't we all?). I have been using the Arm & Hammer aluminum free and it is the only thing that doesn't just cover the smell for me. I don't intend to give it up unless I have a reaction.
Luckily I have darker skin, so I am keeping my fingers crossed that things go smoothly. I do burn if the sun is really strong- last time was on vacation in Aruba- but I do typically tan.
Had my hair in a ponytail yesterday for a free hours, and I intend to wash my hair un the shower for my next wash. After that I am switching back to my old shampoo and condition (Nexium). Then I will try medium heat. Hopefully by the end of rad (if all goes well with those steps) I will get a realxer.
0 -
tmb173 - it's great to hear another cold cap success story. Good luck with radiation - how many treatments do you have? My RO didn't care whether or what deodorant or antiperspirant I used; maybe it would have been different if they were giving me radiation up in the armpit area but I didn't have any positive nodes so they just radiated the breast tissue (which is more than you think, but not way up in the armpit). I had 28 + 5 boosts, and just turned a little pink.
0 -
tmb173 - Congratulations! It sounds like you are doing spectacularly!
My doctor said no to aluminum in deordorant as there is some thought that aluminum in deodorants may cause cancers in breasts. Therefore, I avoid it. I'd rather be a bit ripe sometimes than go through this again.
LeslieVilla mentioned an aluminum-free deordorant by Deodomom that she says works very well. I plan on looking for it. Update: Found it on Amazon.
0 -
I mostly use Tom's and organic cornstarch, I dust off the excess. It works okay unless I have a stressful day. I find it kind of sad that I don't sweat in the armpit where all my lymphnodes were removed...I imagine all the toxins that would normally be removed through this process just floating around haplessly for a different route.
0 -
PatinMN, I will have 33 total. I didn't have any positive nodes, so I think they will only get a little bit of the armpit area.
0 -
I use Jason products. They are all natural. I'm headed for radiation in about a week. They said I coud use any deoderant; I guess it's because I'm not having any nodes done. But I've been using Jason since before chemo and will just continue.
It's 4 weeks since my last chemo. I'm starting to get my energy back and will begin part time work next week. I had to climb 3 flights of stairs last week and it almost killed me. Since then, I've been pushing myself a little more and I believe that is helping with my recovery.
My hair is filling in beautifully. I expected the new growth to have chemo curl, but somehow the old growth has gone curly too. I had the old growth trimmed the other day. I just couldn't handle the straggles. It has made a big difference and my hair looks fully and more controlled.
My parents are having a cocktail party for their 40th anniversary on Friday. It's the first time I'm "dressing up". I have made a black "birdcage" to wear on my hair to dress it up since there isn't much I can do with style or colour. My hair is just a cap of short curls, mousy brown, shot with grey. I won't wear the cage as a veil; it'll just come to my forehead.
0 -
Hotense if you get it directly from deodmom you don't have to pay the high shipping charge and they even put your name on the bottle
I'm 2 weeks post cold caps and didn't start shedding at all until i STOPPED chemo. Now i've been lightly shedding daily. For the first time I have numbness in my legs and feet. And in the evening i get strange stinging sensation on my scalp in different areas. Had none of these symptoms at all during chemo. ( been taking B6 and lglutamine though out treatment and started Biotin yesterday). Good new is i'm off all RX's : Raglan, prilosec and senna, tummy problems still there but only hurts 1/2 as bad as it use to during meds and chemo. Everyone does react differntly I think SusieQ also mentioned she had a little more shedding after chemo stopping and cold caps too. I have 2 more weeks to get strong enough before surgery lumpectomy with both breasts lifted, Then rads. I'm getting my energy back a little every day but still have the extra 10 lbs weight gain form chemo, cant wait for it all to be behind me. I'm hoping the numbness goes away and my tummy recovers and there is no permanent nerve damage. 0 -
hi all...just thought i would chime in with the whole billing issue. I would have never received my deposit if I didn't fight for it (only took 2 months) and during this period, I was still being charged per month for the caps I sent back. I was beyond furious as I vividly remember dealing with this nightmare and emailing PCC while I was in the hospital recovering from my Bilateral Mastectomy. Real fun. It's a shame that the company is so disoraganized.
Question to all the ladies that are done with the caps...is 6 months PFC too soon to color my hair? I have an appt with a salon to do ammonia free color and cut this saturday and am wondering if its too preliminary. I'm still *slightly* shedding so i'm a bit worried but I just can't take this dark roots anymore.
0 -
Ndmk, 6 months is the length of time recommended by Penguin. a lot of us didn't wait that long, including me - I colored using Clairol Beautiful (no ammonia, no peroxide) after about 7 weeks, and went back to my regular color about 8 weeks after that. I think you should be fine!
I'm sorry so many of you have had billing and refund problems with Penguin. I think they're getting too big and don't have the needed personnel. I had no problems myself, so at least it's not universal.0 -
LeslieVilla - Thank you, I will do as you suggest in getting Deodormom.
I just wanted to sympathize with you about your apres chemo symptoms. I had a lot of them also. I am a slim woman, but I looked shapeless and blobby as I carried a good bit of water weight which eventually went away. My lower legs, ankles and feet were puffy to the point that I would sit with my feet proped up on a bureau high above where I was seated just to get some drainage, not that it helped much. I was very selfconcious about my fat feet and ankles as I have always had - and do again now - had slim ones.
I had gained weight and had no waist at all. My chemo doctor said I had chemo de-conditioning, a nice way to say I was shapeless. I also had funny sensations on my scalp, please don't worry about them. And, I began shedding again more heavily after chemo ended. It finally settled down to a steady discouraging shed, but a lot of what I lost may have been breakage so you may be luckier. I had stupidly lightened my hair six days before having chemo - ugh. Anyway, I could see a lot of damage where my old hair met my new growth and that is where many broke off.
The good news is you will feel and look better the farther you get from chemo. I began slowly excersizing on a treadmill, then later an elyptical, and believe it helped a lot to get me stronger, fitter and regain my shape. I watched what I was eating and used MyFitnesPal phone app to educate myself about and keep track of what I was eating and have taken off a dozen pounds.
My OBGYN recommended that I start taking a high quality probiotic so I did. I am sure it helped me recover faster.
I wish you a quick recovery.
0 -
Got my caps in the mail last night in prep for use during my Tuesday chemo. I've got tell you guys, I'm anxious. It seems like a lot to coordinate and I'm afraid I'm going to make a mistake. Unfortunately, the only chemo time available for me was a 3 p.m. appointment. Since I won't be able to continue to wear the caps at the infusion center (it closes at 8:30 p.m.), I'll have to travel home with the caps and resume changing them out at home. What if we hit traffic on the way home? What if I get the timing wrong on the caps? What if they aren't cold enough? What if, what if, what if. It's making me nuts. I know I'll get through it but it's a lot to think about. I'm sure it will all be worth it in the end but it just adds another layer to the whole stress of chemo. How did you guys cope with things on your first day?
0 -
gilded cage-I would ask them to change the date, in order that you are able to get an earlier start. Many people do this-it's not a problem. Ask that they schedule you the earliest appt. you can, 8:00-9:00 am is a good time. They usually don't start the infusion until 1-1 1/2 hr. later They weigh you, take your blood pressure, etc. Then you will likely get @ 45 minutes of pre-medication. Will you be using a freezer or coolers with dry ice?
0 -
I cancelled the reoccuring payment for PCC on my paypal account and I contacted Paypal yesterday and told them I was billed for another month after I returned the caps and still had not had an answer back from PCC accounting about my cold caps and had not received my deposit. I got an email this morning saying PayPal refunded 2 payments of $455 it all back to my account They can only go back 45 days ladies so be sure to report PCC to Paypal in time to still get your refund. They get a lot of complaints I didn't have to fight at all just told them the truth and gave them UPS tracking records to prove they got the caps back. I love Pay pal
Justice is served! 0 -
gilded - I hear your worries. I think we all had them. You will do fine. My first round was a bit chaotic with the caps and I thought I wouldn't be able to handle 8 of them. But the fine women on here reassured me and they were right; it got much easier for the second and subsequent rounds.
I drove home with a cap on. It was much nicer and more restful to finish the caps at home. I live quite close to the cancer agency, but I've read of people having to stop on the way home to change caps. That only works if you are using dry ice and have the caps with you.
Be sure to do a practive run with your helper so you both feel comfortable with fitting the caps.
0 -
Hortense.. love ya girl thank you for enouraging me. Glad to hear that. I figure after surgery i'll have more bloating but look forward to eating better and working the chemo bloat off. I also have no waist and fat legs right now. thanks also for the tip on probiotics that may help my tummy. I was worried it was neropathy effecting the nerves in my stomach muscles. Any way the chemo de-condtioning should be under way
0
