Cold Caps Users Past and Present, to Save Hair
Comments
-
Hey Ralston~
I took some Advil or Ativan before my treatments. They helped a bunch with the cold at the beginning. I had 6 TCH treatments and I totally lost it on my dear husband at the 4th one. I told him he was "making them too cold" and hurting me. Things were better after that one...
Good warm thoughts being sent your way...
0 -
Ralston. I am Seattle area. 20 weeks PFC. We would be happy to show u what tricks we learned w the caps re keeping Velcro off of hair. Where r u being treated and when do u start. If you would like to talk PM me your phone number and I can call you.
0 -
Lucky60 Thank you for posting about the 6 month mark and things magically melting away. I am looking forward to that..!
0 -
Ralston: Follow up with Sachette..us pengiuinstas stick together and was pretty confident someone would offer some local help! I also took ativan the morning of chemo and a tylenol just in case of a headache. My nurse also gave me bendryl in my pre meds so I was chilled out and it didn't really hurt. The first few minutes were a little uncomfortable but then it was fine. It really was not bad at all and I HATE the cold. It was worse for me icing fingers and toes...that was uncomfortable! Good luck! You can do it!
0 -
I am considering the PCC. Please correct me if I am wrong, but what I am gathering is that you wear them at the following times
Starting chemo infusion/dose aka when you are getting the cocktail and until it ends.
After the cocktail? On your way home or hrs afterwards?
2-3 times inbetween treatments? So if you have a 1 every 3 weeks you should wear them once a week for how many hours? 4? 10?
Thanks for helping me better understand.
0 -
Hi Everyone I am 7 - 8 weeks PFC and the shedding has 90% stopped for now! I comb through my hair in the AM and I have some shed but nothing to much falling out during the day! I am getting new growth thank goodness. I already have an appointment for Sept for Color! ANyone looking for EG's caps I have a set of 6 for sale. Used for 4 TX. PM me if interested.
Corrine - Start 45 min prior to TX, wear up to 3-4 hours after TX I wore mine 3-4 days after TX then again the following week for 2-3 days for 2 hours each time.
0 -
My oncology pharmacologist recommends B6- 50-100 mg twice a day, Glutamine- 10 gm daily (most use powder since caps are so expensive. I got some cap online in bulk), and acetyl-carnitine- 1gm twice daily.
CorrineM1- sebm9 will private message her details. You may also want to check out back postings on this site, the Penguin site, and the Rapunzel site. The Rapunzel site has links to articles (my favorite is the Jan 11 Washington Post article), TV clips and other resources.
All the best, Julia
0 -
som eof you are posting about supplements like B6. I thought we're not supopsed to take supplements durig chemo so that there are no antioxidants to help the nasty cancer cells?
I don't think glutamine is an antioxidant, but isn't b6? or some other the others mentioned?
0 -
Hi brca1babe I took B 6, B 12, L Glutamine, L Carnitine, Iron, Calcium, Biotin, D 3 (prescribed by Doc), and Probiotics. Supplements like Black Cohash or anything that can be a Phyto Estrogen is a danger. Cod liver oil or Omega 3's are bad because they are nature's blood thinners and in case you need surgery that is a bad thing. Most of what I took was already in my diet but chemo strips aways allot of the nutrients so its good to have a little extra.
0 -
Ralston, If you are practicing with the caps from the regular freezer, it's going to feel colder (in a way) than the actual caps from dry ice (or deep freeze) during infusion. That's because during infusion, you are using the PCCs at a temp that will pretty much freeze your nerve endings after about the first 5 minutes. You'll have a general sensation of cold, but after that first five-minute "brain freeze" it is bearable. And, yes, you'll have lots of pre-meds which will also numb things. Check with your nurses to see what they'll be giving you, and make sure you tell them what other meds you take that morning (if any) before you get to infusion.
Corinne: the correct information for PCCs is: first two caps go on for 20 minutes (this is usually part-way through your pre-meds) and then the third cap goes on. Exactly 10 minutes into the third cap is when the chemo portion of the infusion should begin. The third cap and all subsequent caps are changed every 30 minutes, and you continue wearing the caps four hours after the infusion has stopped.
You work with your nurse on infusion day to get the timing of the first cap. That 20min-20min-10min routine at the start is when you are pre-chilling your follicles, putting them to sleep, before the chemo drugs hit your system. Also, be aware that your first chemo infusion usually runs significantly longer, because each medicine (including each of the pre-meds) will be started on a slow drip for the first few minutes, to make sure you don't have an allergic reaction.
If you PM me your email, I'll send you my Penguin Cold Cap writeup. Even if you decide to not use them, it is profound to even (now, finally) have a choice about how to handle this devastating side effect of chemo.
Best,
Susan
0 -
Thank you! I am practicing with the actual caps from dry ice and it is killing me. I am praying that the Aleve and the pre-meds will help me in the process, because I am not planning to give up. Something interesting I notice is that since I have been practicing (pre-treatment) I am not losing hair. I have tons of hair and in a normal day I will lose 5% of it. At least it seems to be working for now ;-)
0 -
Hi everyone:
Finished my first week of Rads....only 28 treatments to go. No SEs yet but it is still really early, I know. I can't believe Monday will be 2 months PFC. Still shedding but definitely slowing down. I'm now washing at the 7 day point rather than waiting the 12-13 days as I think the dirty hair made the shedding worse.
Welcome all you new girls. Hard to believe, but the chemo will be over soon and it really is doable.
I am now anemic from chemo so have to eat better now and take iron. I don't think anemia and rads go together since rads make you tired as does the anemia.
Arlene
0 -
Hi All:
Arlene: I just finished 30 rads last Tues. Hooray!! The side effects are "sunburn" on your breast and underarm, possibly on your chest area, depends where your tumor was. The "sunburn" gets worse with each treatment. It may even peel. It also itches--don't scratch. Use the cream they tell you to use-I used "Aquafore" $6 over the counter. If the itch gets bad, ask the Dr. to prescribe something-usually they will give you a script for Hydro-Cortizone cream, stronger than you can get over the counter. I never filled the script, because the itch never got that bad for me.
For the tiredness and the fatigue--get out and walk-I did it every day after my treatment and I never got tired or fatigued at all. My med Onc. told me to walk, walk, walk after chemo and rads and I would combat the fatigue. I did it and it worked in both cases. No marathon power walking necessary, just walk-you can even window shop while you walk or walk with a friend. The walking oxegenates your red blood cells, which gives you energy. Trust me, it works. I am so full of energy, my husband says I run him ragged!
Best to all and Keep Positive!!--That also works.
Nancy
0 -
Nancy: Thanks for the advice. I have the Aquafore, Aloe and Vitamin E. So far, just using it for moisture. Lucky you, only 30 treatments, I get 33. I've been doing the walking and will keep it up.
I'll try the mall walking too - much cooler!
Happy Saturday everyone! Arlene
0 -
Ralston. I sent u a pm regarding tomorrow....
0 -
Hi everyone and thanks for all the congrats-
This last 6th TCH chemo session which I finished 8 days ago was worst in terms of SE's but I still managed to go to the beach today in Santa Cruz, go on outrigger canoe with my son and had a great burger and sweet potatoe fries at local place in the warm sun. Just ignored the neuropathy,low grade nausea, fatigue and felt good about having hair and not having to worry about a wig or cap blowing off while on the canoe, and going into the ocean. I think it helps to keep busy thru this whole process.
MDG- Thanks for your thoughts on not having to carry a sign"I have cancer" I totally agree we should have a choice whether to broadcast our medical situation. When people see you with a cap or scarf, many of them know. I like the idea of being able to decide who to tell or not. Furthermore, if you are job hunting it could influence your ability to get the job. Ultimately, I think if I saw myself bald, it would be yet another reminder. Seeing my port and the tissue expander is enough for me but at least those can be hidden from others. I agree with your statement "I don't want cancer to define me" My hair may not look all that great right now- grey roots, drier, flatter but it is still there and I don't have baldness as a constant reminder of the cancer.
Arlene-Good luck with the radiation. I am having trouble deciding to do it. I had a mastectomy but they said margin next to skin being only 1 mm is too small so they want to irradiate the whole skin over the tissue expander. I don't know what the radiation will do to the skin and the future of the implant and they said they cannot predict who may have problems with skin breakdown contractures, etc. I sunburn easily and skin irritations or injuries generally don't heal well so I wonder what radiation will do. They also want to irradiate the axilla since 2 out of 25 nodes removed were positive for CA. However again the risk of lympadema is increased with rads when you have already had an axillary disection. . Don't know what to do, will try and get a 2nd opinion. The decision to use cold caps was simple compared to this. Risk vs benefit ?? AARGH
Snoopy73- I know what you mean about the looks you get from clinic staff. I think the entire clinic must know me and some of them probably think of me as the trouble maker. I don't care. I was the first one to do this at their big clinic and it caused me some anxiety and some of them anxiety. Too bad. They should start thinking of their patients entire physioloigcal and psychological well being, not just the chemo infusion. They never did allow me to bring in more than one small cooler into infusion center and the other 2 coolers had to stay in my car trunk with my helpers running out to the parking garage to get more caps. They did give me a bigger space in the corner of room which was nice after the first time, and the same nurse doing your infusions helps since they then get the idea of timing the pre meds and meds with the caps. I hope to give them an inservice soon (I am also an RN ) and hopefully they will listen . People still don't know about new technology PCC cold caps since some MD's and RN's reluctant to tell them that this is an option.
Keep positive-Nancy- Thanks for your kind words. " The face of cancer does not have to be bald-there is a choice" I loved that. Hearing your positive feedback on radiation also helpful. I agree that walking helps, even if it hurts initially.
Good luck to all the newbies and thanks to the grads for all your support
0 -
Congrats Serenity.....isn't it wonderful to be finished! Now you are on the path to getting back to normal. Hope everything works out well wrt rads and hope you don't need them either.
Arlene
0 -
Hi everyone, just checking in. I'm on day 11, waiting for the "big shed" anyone have feedback on when this happened for them? I'm keeping positive and trying to not think about it. I'm still keeping a hold of it all. All SE's are gone and I'm going to enjoying this next week as ME. Try and get a lot of things done and have some fun.
0 -
I have done two ACs with the caps. My hair has thinned on top, probably lost 20%? Maybe not that much, it just seems that way.
The itchy peeling scalp has slowed down. I may have gotten frostbite the first time. Used a little bit of thin gauze on my part line this time which I think helped. I also put some hair oil on my scalp and that may have prevented all the scaling.
Shedding quite abit yesterday and today which is day 18. Hairs are coming out 4 or 5 at a time. Trying not to touch it!
I have heard the big shed is around 18-24 days or something like that.
0 -
brca1babe - there is a big shed around day 18-24 ... don't panic when it happens, and try not to comb too much out. i regret that i kept combing it to get out the loose hairs. I would recommend clipping it up (so that it doesn't fall all over your house), and then forget about it. Comb with a pik gently at night before bed - and that's it.
0 -
Has anyone used Silica during chemo? is it safe? thought i heard it helps with hair growth.
0 -
dexy- I started shedding day 14, worse on day 17, stopped by day 21. Most of it was from nape of neck, where we didn't get caps tight enough, or my hair is so thick that cold didn't get through. I bought a good wig, just in case, and my real hair is stil 3-4 times thicker. I conditioned it pre-shampoo today with olive oil, and sat around in a shower cap. it looks pretty good, except for the gray roots-which I can still cover up with root crayon. I freaked out initially but the shedding stops. And I never had the tingling or sore scalp women get before their hair really falls out.The nurses at the infusion center all said it wouldn't work-they're all very happy for me now.
Ralston-I take a double dose ativan before cold caps and bring an electric blanket. My head hurts first 10 min, then I can't feel anything. Doze off and on during the tx. My 2 daughters-bless them-are doing all the hard work.
0 -
asmd - the olive oil is a great idea. i really believe half my problem at this point is brital hair. Does it wash out???
0 -
Hi all, just checking in;; like dexxy, today is day 11 after my 1st TC and I am also anxious for the big shed. My hair is thick and i have been tying it all back in a ponytail lately. Yday and today i really feel like ME again, no SE, i did some house work, cooked and took my kids out to the playground today. Went out for dinner with hubby & kids yday, felt good to pull my hair back and not worry abt scarfs, hats etc.. Hope you all had a great weekend. sending good vibes & hugs.
0 -
I highly recommend you do not use any kind of oil on your scalp. It can heat up and you will lose hair where you put the oil. The only bald spot I have is from putting a little vaseline on the frost bite spot because it was itching. It fell out 4 or 5 hairs at a time. The rest is in perfect condition. I am post 3rd AC treatment and have beautiful, long hair except for the vaselline spot. Frank told me to put a silk scarf under the cap, that silk acts just like hair and I have very fine hair. Last treatment did fine and no frostbite.
0 -
that's interesting about the oil. I put some fancy organic hair treatment oil on my scalp after AC #2 and it really helped with the flaking and itching. it smelled great and my scalp felt so much better. But... I wonder if it loosened up some dry patches and permitted the hair to fall out there in bunches of 5 or 6 hairs at a time. I lost hair at the top where I put the oil but haven't lost any at the sides or nape. so maybe oil is not such a good idea after all!
the dignicaps protocol does rec some deep conditioning with oil but maybe not directly on the scalp itself, but down on the ends is ok.
I am going to have to do a bit of a comb-over to cover my thinned part, but hey, it's better than a wig in 90+ degree weather!
0 -
Ralston - in addition to taking pain killers before the caps go on, take another dose in 4 hours to prevent feeling the pain during the last half of the wearing time.
Colleen
0 -
Hello ladies; I am day 12 after my 1st TC treatment; I am afraid of the first shed and I am afraid to wash my hair:-( any advise would be helpful. Morrocan oil shampoo or Burts Bee or Kera Kare?
Thanks :-)
0 -
For all of you worried about the "big shed", I am here to say don't freak out! Of course, it's different for everyone but I have had hardly any shedding and I am 10 days past my 2nd round of TC. I wash my hair every 7 days with Burt's Bees shampoo - the Pomegranate and Soy one. I comb once a day and wear a big fabric covered rubber band in my hair most days. I had some flaking after the first tx but have not had any for about the last week or two.
For those of you being treated at UCSF, they told me last time that they will no longer let us stay in the chair for the four hours post chemo to keep the caps on even if no one is using the chair.. Instead, they are making us sit in the waiting room in very uncomfortable chairs. I am going to send an email to my MO about it. Hopefully, we can get this changed.
Thanks for everyone's support and advice on here! I have learned so much here which has been so helpful.
0 -
momof4girls - Thanks. I will get the Burt's Bees shampoo & conditioner. I am 12 days post my 1st TC and scared to wash my hair:-( does anyone here use/used the morrocoan oil shampoo or the Kera Kare? Just curious.
Thanks all.
0
