Cold Caps Users Past and Present, to Save Hair
Comments
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Arlene: Someone else told me about the 6 month study. Are you at the 6 month mark? My nose constanly runs!!! I can"t take it!
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Soccergirl: The runny nose is horrible. I thought once I was finished with the Taxotere it would be the end but oh no, now I find the Herceptin is a culprit too. I am more than half way finished so past the 6 month period.
Lucky: A lot of us wore the caps between treatments. I especially used mine the week after chemo for several hours a day and tried to do it often. Helps stimulate growth and it really helped me with the itchy, tingley feeling.
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Arlene,
Thanks for the tip! I'm going to start doing it tonight after work.
Another question - on the PCC users blog a few people mentioned coloring their hair during chemo - anyone have any comments on that?
thanks,
Lucky
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luckyjnjmom~
I am not sure about coloring hair during chemo.
I did the PCC's over 2 years ago but at that time coloring during chemo was a no-no.
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luckyjnjmom: You are doing great and have got this down! Your treatments will continue to go smoothly. Keep hydrated and keep exercising -- my biggest fatigue post-#4 was in my gams, but the more I walked the better I felt. On the worst days, it was tiring even going up a few flights of stairs, but if I kept going the oxygen made me feel much better. I just turned 50 last month and was never thought I'd be so happy to reach that milestone!
Re: ice: I used pellets in ziplocs (don't close them all the way so the gas can escape), much more manageable to arrange.
My top advice:
1. Hydrate hydrate hydrate. 1 oz water for every pound you weigh, daily, to flush the system. Chemo is active in your system during the infusion and then it is a waste product, move it out!
2. exercise exercise exercise. This helps detox but also keeps your red blood cells oxygenated. I maintained my daily swimming schedule throughout chemo, and even got more active because I had taken time off of work and felt great the whole time.
3. Wipe the caps before you put them on to prevent frost.
4. Change your part between each cap.
5. Ignore the naysayers! It is wonderful as you go back each treatment with your hair, watching them change. I was the first woman at my cancer center to use caps, and now all of my doctors recommend them.
To any new folks starting or lurking, PM me your email and I'll send you my writeup of my method and experience which is loaded with tips and advice.
Best,
Susan
p.s. am in Stockholm right now for the Nobel Prize events, and it's blustery cold and dry here and even with my big chemo-curl hair being mashed down by my winter cap, it still is big and curly!!
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Susan,
I am so excited for you! Going to the Nobel Prize ceremony is a lifetime achievement. Enjoy - Also, Sweden is lovely - even though it's cold - enjoy that too!
Thanks for the advice - I'm drinking water like it's going out of style - and green tea - which I'm really trying to develop a taste for since it's supposed to be so good for you.
Safe travels,
Lucky
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Did anyone keep the caps for a while and use them after chemo? A lot of you have said that you lost a lot of hair after chemo. I hope I am done with the caps, but sure don't want to lose hair now.0
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I used the coldcaps and was religious about following the directions. I am now 18 days from my first TC chemo and thinning heavily.
I am hoping I have enough hair to try to save on Monday! I am not giving up but wonder how much more I can thin without it being unsightly. I have three more treatments to go. Should I put the caps on daily? Wonder if that could help with thinning now?I also had a bad reaction to the Cytoxan and wonder if that had any effect.
Keeping my fingers crossed. It sounds like some of you have had success.
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Pokey, Probably wouldn't hurt to wear the caps daily. Maybe you could ask Frank.
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Pokey, I would call Frank. What do you mean by a bad reaction?
Laura 5: i didn't keep the caps after chemo. My worst shed was after the 4th infusion but stopped shedding after 5 weeks. I kept 85% to 90% of my hair. My take from studying previous posts are as follows:
Don't play around with your hair until you stop shedding. I was so tempted use my hair tools, but refrained until the shedding stopped. However, I rinsed and condioned my hair every day. I only went one day w/out combing my hair. Rinsing your hair is good.
I ate a lot of fish, eggs, chicken, took vitamins, ( get your iron checked) slicia, Omega 3, used flax, wheat germ and lots of fruits and vegetables. I am not a big meat eater but did eat grass fed beef towards the end to boost my iron levels. Foods that grow your hair are also foods that prevent cancer too.
If you have a lot of build up you should add vingear to your shampoo. I used a lot of leavin condioner but now looking back, that added a lot to the build up. My hair was dry at the end of chemo and woud have done better if I used a better condioner. I am cutting the ends off every couple weeks.
I am 10 weeks post pcc and each day my hair looks better. I need to color and will do it in a couple of weeks. I kept my eyebrows and now I need to wax them. Eyelashes are a different story. I lost more than half on the left, but was using latisse so the three lashes I kept were super long. My right side eyelashes did better. Now everything is coing back.
have you finished chemo?
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Pokey: I used the ElastoGels caps so I bought them and had them at my disposal for use when I needed. I kept mine in my freezer and used routinely.
Almost everyone here has had success with the caps and so hoping things settle for you and you are among the successful ladies. I think most of us lost the biggest amount of hair after chemo too. Keep positive and as stated, check with your rep at PCC.
Best of luck!
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To those using caps- tips:
A. I too used Ativan about 40 minutes before the chemo- helped tolerate everything Better livng thru chemistry
B. Used Dr. Scholls or Walgreens extra thick moleskin around my scalp to prevent any skin irritation. I cut the pieces out the night before to follow my scalp line and would apply them before I left for the chemo infusion center
C. I covered my ears with heavy soft cotton gauze so cap wouldn't touch ears
D. Use ice packs on toe and finger nails during chemo. I wish I had done this thruout the chemo infusions. Perhaps then my nails wouldn't have broken so much. I put the mini ice packs in the cooler with dry ice but be careful they do not get too cold.
Re herceptin effects or possibly due to taxotere ( I had frequent eye tearing (could not wear my contacts) and also sometimes a runny nose. I am now about 5 months PFC from TCH and the eye tearing is just starting to let up. No more runny nose
D. Recommend taking CoQ10 if your onc will permit it ( mine did not) and also carnitine for neuropathy prevention. I still have neuropathy in my feet. I am hoping that it will eventually go away. I can't wear heels very easily cause it starts to hurt.
Good luck everyone, most all of these rather miserable side effects eventually get better.
It has been a week since I colored my hair. I washed it about 4 days after coloring, shed just a very little. I am still babying it by washing in cool water. I was told no coloring during chemo
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thanks for the tips soccergirl. Yes, I just finished chemo on Monday, with a full head of hair! Sure do want to keep it that way
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Laura 5: Congrats!!!!!!
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Thanks for all the tips. I don't remember reading anything about wearing the cap daily but very happy to try it and will contact PCC.
Soccergirl - So, my reaction to Cytoxan was vomiting (while I was still hooked to the IV) and completely knocked out for two days. I have only had one of four treatments so if I continue to shed at this rate I won't make it through the second treatment. Luckily, I started with very thick hair.
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Laura,
Congrats! what was your chemo regimen?
good luck!
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Thank you girls!
My regimen was TCH x 6.
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pokey65: I'm so sorry to hear about your reaction to the cytoxan. Perhaps they will be able to adjust your level for the upcoming rounds? One of the premeds I was given was Emend, a very powerful anti-nausea medication. Was that part of your pre-meds, and if not can you request it? (I also took it the two days following each chemo).
When I began my shedding I collected my hair in a baggie; I have Big Hair and we tend to shed more than those with thin, fine hair.
You can wear the caps daily betwen infusions straight from the freezer (i.e. not at the deep freeze temp).
For those with heavy post-chemo shedding, Frank has suggested iron supplements to help your system recover. Several women have reported that the shedding stopped very quickly once they began taking iron supplements.
luckyjnjmom: my nurses didn't allow me to drink green tree during the chemo regimen because it is an antioxidant. (They did allow me to use Milk Thistle, which boosts liver function, even though it too has an antioxidant property.)
Cheers all!
Susan
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Susan,Thanks for the info on iron supplements. As soon as I feel a bit better, I will try taking it.0
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Question: I am brand new to this forum. I just had my first visit with my doctors and I know that I am at 6cm, Stage 3. My question is that I start chemo next Thursday and I would like to use the cold caps. Because I don't know yet what medicine I will be given, can I still use the caps? Is PCC the only place to get the caps? Can I use Elasto-Gel Cold Caps?
Freda-
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Southern, I believe Arlene, see above, used Elasto-Gel. I used Penguin. I think all regimens will work, but some are better than others for sure. AC is tough on the hair. Here is the website to Penguin: www.msc-worldwide.com. Good luck!0
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SouthernMis: Yep, I used the ElastoGels and they worked just fine for me. Just follow the same protocol as the PCCs and make sure they are new ones and you'll be fine. Any questions, please let me know. Oh, and I kept mine JUST in case!
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Ladies: I just thought about something. Since I'm on hold on Herceptin, do I need to get my port flushed and how often. Doctors have not mentioned it. Monday would have been H day and is 3 weeks. I'll call Monday.
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Arlene- if you don't want to keep the port they can remove it. They can do Herceptin via IV. Thats how I'm getting mine. It is not like chemo that a leak can burn you.
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Southern
Good luck to you as you start this experience. Drink a lot of water pre and post chemo - it'll really help.
I used Penguin at the website the others have mentioned. I called them the Wednesday before my chemo was to begin on the following Friday - and I got the caps delivered and all of the instructions by the following Wednesday which gave my husband and me time to work through the instructions and practice a bit. They were very responsive. Stay strong, you'll get through this - and keeping your hair helps to keep your spirits up!
Lucky
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Laura,
One more question - did you use the cold caps between chemo treatments - like some of the other women have mentioned? thanks,
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Arlene,
I'm getting my T/C and H through the vein right now - my DR told me that for 4 rounds, i could try it through the arm (of course no one mentioned a port until three days before chemo was scheduled - so it was a little late) - so far I've had two infusions and no problems. Once I get through the chemo - I'm planning to try to keep taking the Herceptin through the arm, it's 1 x every 3 weeks for about 30-40 mins - so that should be doable. Although, it does annoy the nurses - they're not accustomed to starting IVs.
Good luck,
Lucky
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Susan,
It's funny - I was on iron supplements before chemo - I had a blood vessel burst after my BMX and lost a lot of blood - anyway - I had no shedding on the iron - but the shedding started when I stopped taking them. Do you know what dosage Frank recommended?
thanks!
Lucky
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Thanks for all the information...I'm a bit overwhelmed and your responses have been a great help.
Freda-
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Lucky, I didn't use the caps in between treatments. Probably would have, had I started shedding a lot though.
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