Cold Caps Users Past and Present, to Save Hair
Comments
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jc, keep us updated and we'll help you cross the finish line together in a couple of weeks!!!!
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Thanks Deb,
Hope treatment is going as smoothly as possible for you
Kay
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SusieQ - so happy for you! First that you are done, and 2nd that you have most of your hair! Awesome results! Way to go!!!!
tmb - it is odd - wherever you lose the hair, but if it stays on your head, that is the best treat of all. wishing you much luck!
curly0 -
Hi girls- i just returned from a business trip and wanted to check in and see how you are all doing- it sounds like you are powering through the caps and the chemo. Brave strong women!
Hang in there, it will be over soon.
Curly your rash under the arms sounded familiar to me- I had that as well but then found out I am horribly allergic to Tom's deoderant - did you also switch to a new brand when you started chemo? Just checking, that would be a simple solution for sure! I also get rahses form detergents and also vicodin. Just my thoughts.
Good luck to everyone!!!!!!0 -
I had a rash under arm as well that turned out to be fungal infection.I used a prescription and it cleared up. I think it was from tenderness from the surgery and not drying efficiently after showers.
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Also please have your doc or infusion nurses make sure the rash is not shingles, which can happen when our immune system is suppressed. I had that years back from poor nutrition (living on "nukable" dinners in the lab round the clock). That usually shows up first under arms or on the neck, and gets treated with anitvirals.
Good luck!!!!!!!0 -
sciencegal - you really do have a science background! Thanks for all the tips. I did switch first to Toms, but found it did nothing for me! Just switched recently again, but don't think the rash is from the deo, but will keep that in mind because it's a very good point.
I had the underarms checked at emerg with my trip there earlier this week. They gave me a cortisone cream and said this was "inflammation". Seems to be helping. Not gone, but better under both arms. The one arm stings and peels like a really bad sunburn.
I am still knocked out by this darn drug. Pain much better, but fuzzy head and so weak. Night and day difference from the FEC. I called my onc to talk about how awful i was feeling - she was of no help. I asked if we could talk about dosage or alternatives, as she admitted that i am on the extreme end of side effects. She wants to wait the whole 3 weeks to talk about all this and says we can talk about it when i show up for my next round. Doesn't that sound ridiculous? Wouldn't this be something you'd discuss PRIOR to the day of infusion? I'm not letting this go. I hope my energy will come back this coming week and then i will insist on a face to face. I cannot imagine going thru this 2 more times. I am so weak it is brutal. I have barely been able to get out of bed. This is day 10 past TX #4; the first of taxotere for me. Ugh.
curly0 -
Gosh curly I am SO sorry you are going through this. I also had taxotere (six infusions with my regmen) but thankfully wasn't hit so hard by it. I wonder if you do have an allergy to it? What you are going through is extreme, for sure. I know they expect chemo to make us super sick, but Geez!!!!
I send you healing thoughts and (((((hugs))))))0 -
I am 4 weeks PFC and just had my hair cut for the first time in 6 months. I cannot tell you how excited I am to actually have hair to trim. The hair dresser was great with me. She blew it dry but using a cool setting and was very gentle with the whole process. I still am not brave enough for a color treatment, but scheduled that for 6 weeks from now. The PCCs work, girls, so keep the faith! My eyebrows thinned but just colored those in with shadow, but I haven't lost them entirely nor my eyelashes; however, I do use a mascara that is so natural that it practically rubs off without water! Hair on legs is starting to grow
Although, I am not too sad because that tells me my hair is growing back so the thinning on my head will be gone in no time
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Jlow, I love seeing these pictures- proof that cold caps work. You look great and I hope you also feel great. Do you still have any shedding?
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Argg the forces are against me and cold caps apparently. I just found out the freezer at my onc office is broken and my fourth of six infusions is this Tuesday. They can't get a repair man out until Monday and don't know when it will be fixed. The cc rep suggests I delay my chemo but I don't think that's a smart option so I've asked to hire her to get the caps on dry ice and help me Tuesday with the changes. Cannot wait for this chemo to be over. The cold caps have been the most challenging part!! Who knew?
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Hope. Good pic. My protocol says 6 months pfc for cut and or color. I have 1 month to go.
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AmyQ, sorry you are having so much trouble! Is Susan your local rep? I flew her out here to help me with my first session and she was wonderful...she'll make sure everything goes smoothly. Although I had to use the dry ice each time and it was a pain, I guess the benefit is that at least its within your control when you do it that way. I hope all goes well this week!
JLow, thanks for posting the picture - you look fabulous and who would ever suspect you just finished chemo? I am planning my second trim for next weekend, really looking forward to it. Did my first pfc business trip this week and using bowl to rinse in the shower worked fine. Slick pony tail on non-wash days and all was good. Still can't wait to get back to a normal hair routine, though...all in good time! Still shedding but not worried, I think I see a lot of shorter new hair coming in and eventually it will all catch up.
Have a great week, ladies!
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jlow - your hair looks terrific! you're giving us newbies hope...
amyq - arrrrgggg... so frustrating - hang in there. glad you will have a pro to help you through the next round.
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Hope49 - yes, Susan is my rep and she feels terrible but some of this is out of her control which is the problem. The freezer is at my oncologist office, it was donated by the Repunzal Project but no one has real ownership of the entire process. I am renting the caps from Susan but she implied it's not her responsiblity to ensure the caps are kept frozen or to maintain the freezer. She has called a repairman who hopefully will be able to fix the problem early enough on Monday so we can put the caps back in and get them to the proper temp by Tuesday morning. There's too many disconnects in this process which is why it's such a headache. I am very grateful to be saving my hair but the process isn't without difficulties and I think potential new users need to understand the risks.
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jlow - you look beautiful!!!! Yay for hair!!!!
AmyQ - that is annoying! I use dry ice because there are no freezers at my hospital for caps. It allows me to be in control, which i like. I would hate to rely on someone else to ensure the temp of the caps. ever think of using ice? Once you get used to it, it's easy.
curly0 -
Yes we used dry ice the first time because the freezer wasn't plugged in long enough to get the cc to the right temp and I thought it was a royal pain in the butt which is why I was so happy to hear we could use the freezer for the next five treatments. Silly me - out of three cc treatments only one went as planned. It iritates me to be paying close to $500 a month and to have such difficulty. I really wish the new system of chilling the caps while on your head was available.
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AmyQ-You can delay starting your 1st chemo but once you've started treatment the doctors' don't want to deviate from the protocol. This is what the success rates are based on. Occasionally, I should say rarely, you can delay a chemo treatment by a day, or 2, once you've started treatment. You can delay the date for starting your 1st chemo, that isn't a problem. I wouldn't count on the freezer being fixed, especially when considering that it takes more than 24 hours to chill the caps to the proper temperature. I know the PCC Co. says otherwise but I have found this to be fact. Be sure to have a helper who has experience with using the dry ice with the caps. I think Susan has the most experience in your area-you're in good hands!
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Jlow, you are beautiful! congratulations.
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Jlow your hair came through the process looking awesome- congratulations!!
AmyQ i hope the temporary dry ice works okay for you. I know it is a big hassle but so is having to grow our hair back "from scratch" and for some women it sadly never quite comes back fully. Hang in there!!!
It is true that the caps are the most challenging part of chemo- but for me were a good distraction from focusing on the yucky stuff going into my veins. The yucky stuff that may have saved my life, but still icky to get and think about too closely.
Good luck to all!!!!0 -
Heavier shedding today- Day 19- but still doing incredibly well!!
I have my "3 day before chemo" hair wash today, but I am ready to call this a cold cap success!
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Good luck with the washing tmb - always a big deal during the capping period of time. It is great to be back to regular showers now. This too shall pass!
I wish everyone minimal shedding!0 -
jc254 - I do have shedding but nothing more than a normal shed for someone who hasn't been through chemo. Every shed is freaky, but I know that my hair is growing now. Chemo is no longer in my system so it cannot do anymore damage to my hair. I am still pretty gentle with it so that I can keep what is still on my head while I await the new growth.
My protocol also said 6 months before doing anything to my hair, but I have a friend here that was one of the first women to wear cold caps in Georgia 3 years ago. She was in direct contact with Frank throughout the entire process. When she did the cold caps, she actually COLORED her hair -- TWICE!!! There is no way I was going to do THAT, but it made me realize that PCC has guidelines based on a number of people using them and those people are all on different chemo meds. Also, her hair was much thicker than mine and PCC told me that my caps had to be at a -32 while she was told -28. She kept all of her hair with a good bit of thinning. Given all of this information from her truly helped ease my mind throughout this process. I am in constant contact with her as to when I can do certain things to my hair. Also, I only wore the caps for 2 hours after treatment not 4. and curly there is NO WAY I would wear them for 7 hours after.
The problem I am having now is getting my deposit back! I have contacted the PCC suppport several times. This final time I said that I would call the credit card company and refute my last bill if they did not at the very least respond to my emails!
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Congrats tmb!! Way to go!
Ah, sciencegal, I dream of real showers and hair dryers!
I found a local woman to take my coolers and supplies so hopefully she will be another success story to add to the list.0 -
JLow,
That is good to know. Personally, I think 6 months after chemo before using chemicals is a bit long. I think I will wait about 3 months if I am able to keep most of my hair. If I have significant thinning I will reconsider.
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It is so confusing as there is very little post chemo instruction. On the PCC boards they say you can use natural vegetable dye 3 months after your FIRST chemo but no chemical coloring until 6 months after your LAST. I guess I will see how my hair is doing and cautiously attempt baby steps back to normal.
I have no idea when you can start drying your hair again or using heat at all.0 -
AmyQ, it's true that the caps are an ordeal. I have trouble "facing" them for several days after each infusion. (I use dry ice because there's no freezer at my cancer agency.) After the first one, I wondered if I could possibly do this 7 more times. But I'm halfway through ACT and still have most of my hair. I still dread the next one, but I know I'll tough it out and be glad the next day that I did it.
Sciencegal (or anyone), do you know of any proof that cold caps help prevent permanent loss? My MO is dubious about caps and refuses to be impressed with my success so far (she's a bit of a cold fish). I told her that one of my motivating factors was that my brother's hair never really recovered from chemo 25 years ago (non-hodgkins) and that I wanted to have my thick hair back afterwards. She informed me that there are no studies to prove that it helps prevent damage to follicles and helps with regrowth.
I would love to find a study that proves it does. I wrote to PCC but they don't seem to answer emails (not the first time they haven't). If anyone can provide info on recent studies about cold caps, I'd love to pass them to my MO. Otherwise I'll be satisfied with "being" the study and she can see for herself.
...which is another reason I will continue with the caps. I am only the second person in Vancouver to be cold capping. It is causing some "trouble" at the cancer centre because it's a bit disrupting to the routine. I will be writing a letter to them to share what keeping my hair means to me, because they are apparently "reviewing" allowing the use of cold caps and coolers. I will be the proof that it's worthwhile and perhaps be able to advocate for a freezer for future patients.
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Tmb - Great news so far so good! I know you are focusing on getting to day 21. Rooting for you and will do a virtual happy dance with you on Tuesday!
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Jlo I did not get refund. Just minimal charge for the last month
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JLow, I also thought I had a deposit refund problem and after 5 unsuccessful attempts to get someone to contact me, I copied in Frank and then I got a reply from him right away and someone looked into it within a day or two. What happened was they applied what I owed the last month against the deposit and so I only got a partial refund at the end. I went back over my credit card statements for the treatment months, and it all checked out. Just wish they would have explained that the first time I asked! I hope you get it all figured out, take a look at what they've charged so far.
shipsgirl, try sending a PM to 301724. She has a lot of research data she can share with you. I also know that on these boards there are those who have posted about permanent hair loss from Taxotere which no one seems to tell you about but affects about 3-6% of the people who are treated wihth it. Keep up the good fight to get the information out!
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