Cold Caps Users Past and Present, to Save Hair
Comments
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Modavie - I did 12 rounds of Taxol, but no AC first. I would most definitely continue using the cold caps through Taxol. I think I'm the only one on this board that had Taxol only, but two other women on the September chemo board had Taxol only (or first) - one lost her hair early on, and the other kept it throughout her 12 treatments but then it fell out. I lost hair elsewhere on my body so I know I would have lost the hair on my head without cold caps. You can do it!
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Ugh, I need another pep talk y'all! And by the way, my mom said she read a blurb on inStyle about cold caps. Pretty cool. I just spoke with the Penguin rep in my area. She seemed really surprised by how much hair I've lost. Granted I had pretty thick hair, but I'm getting bald spots on my 2 cowlicks. Not attractive. I'm 3 DD AC's in with my last one next week. I'm doing surgery after and then a 50% chance I'll have to do 4 DD Taxol's after. I've lost about 60% of my hair and it's still coming out in huge handfulls every morning. This sounds so weird but I'm keeping my shed hair in a giant 2 gallon ziplock baggie. She told me Penguin has a prototype machine in my area that is just one cap with regular ice - sounds like the Paxman - that I can try next week. She told me to wear a thin cap or gauze to cover my bald spots to protect them. If I shed for two much longer after chemo, I'll be bald and have done this for nothing. If the shedding stops and I have to do the Taxol, do I even bother with the CC's at this point? I'm frustrated.
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Thank you all! I wish someone who`s been on Taxol can share some feedback with me. As for side effects - so far so good. I`m day 2 post first chemo and I`m only tired in the afternoons - need my nap time
I hope it continues this way. 0 -
TXSockMonkey, I'm so sorry to hear that you've lost so much hair. I hope you don't have to do Taxol, but if you do - I'm here to tell you that the caps worked perfectly for me on Taxol. However, I did weekly, not dose dense. I basically did not shed during treatment - very minimal. I'm actually shedding a bit more now, 3-4 months after finishing chemo, than I did during treatment, but still very minimal.
As for the Penguin prototype machine, I would be leery of using it, especially at this point. My local Penguin rep told me that there were problems with the machine, and they were trying to work out the kinks. This was last September - maybe it's been fixed, but if there are any problems then you've really wasted all your previous time and effort.
Are you noticing any new growth where you've lost hair?
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sockmonkey, I found a post from dancingthruit, who did A/C then Taxol not too long ago, maybe still in the Taxol...I'm sure if you send her a Private Message she can share her experience.
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Hi fellow Canadian Cap users, I have a question for you. Where did you find your infrared thermometer? I don't really know where to start. Thank you?
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Shipsgirl, after much effort and wasted time, I found one at an Auto company. They have to measure temps for cars. Google infra red thermometer and auto company in your area. Cost me about $100.
curly
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shipsgirl, I just looked on Amazon and there are a lot of infrared thermometers at a lot less than $100. You would need to check to make sure they register down to -40 C or thereabouts. I didn't have to purchase one because a previous cap user left hers for others to use at my facility.
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shipsgirl, I ordered my thermometer from Amazon. http://www.amazon.com/Kintrex-IRT0421-Non-Contact-Thermometer-Targeting/dp/B0017L9Q9C/ref=sr_1_1?ie=UTF8&qid=1365203696&sr=8-1&keywords=KINTREX+IRT0421+Non-Contact+Infrared+Thermometer+with+Laser+Targeting%22
It was a little over $40.00 It worked great! Also ordered my satin pillowcase and organic shampoo from Amazon.
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lana830, Please check PatinMN's post about halfway down page 269.
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Hey everyone,
My new avatar shows what my hair looks like after tx #4. I just washed it this morning and still having very little shedding. I'm on TCH and have two more rounds to go. I wish everyone the best of luck with the caps. I'm on the IPAD so I'll post a better picture when my DH gets off the Laptop.
Blessings,
Rhonda0 -
TXsockmonkey, Stay away from any cap using regular ice. I am surprised a Penguin rep would recommend it.
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Looking good, Rhonda!
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Thanks for thermo answers everyone. When the time comes and I'm returning my caps, I would love to pack my thermo with them for the next person. I wonder if they'd allow that. I'll ask. Again, thank you. You women are strong and supportive as hell and I'm so grateful I found this site!!
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Rhonda - your hair looks amazing! You're in the home stretch now!
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lana830 - Cold caps do have to be used from the first chemo treatment in order to save hair. I'm sorry. If it is of any comfort, ACT is a strong chemo and cold caps have not been consistantly successful with it.
Cold cap therapy has been used to help save chemo patients' hair for years in Europe and is just catching on here. From what I understand only about 1000 women have used it so far in this country. It needs to become more widely known so that women can be given a choice about whether to try it or not. It may not be for everyone, but I was very glad to have found out about cold caps in this forum in time to get them and save my own hair.Go to www.rapunzelproject.org for more information about them and to see videos of them being used.PatinMN described it well in her reply earlier on this page to another woman who asked about them: "Cold caps are used to save hair during chemo. Basically you wear very cold gel-filled caps before, during and after chemo infusions to freeze the hair follicles and keep them from ingesting the chemo drugs."0 -
Hi All! I want to share my thoughts and experiences for what it's worth.
I'm not at all surprised that Penguin is promoting the 'new' machine that uses ice. Frank was pushing this 2 years ago and I was a bit skeptical at the time. Ice has a freezing point of 0.0° Celsius-not even close to the temperature the regular Penguin cold caps are used -28.0°/-32.0° Celsius. I've talked with someone who used it and it failed-she had to replace the batteries. I'm not sure how long that took but she ended up losing most of her hair.
Not as many women are on the ACT regimen as are TC or TCH. I did meet a woman on the ACT regimen and she did very well, keeping most of her hair. I've read on this forum of a couple others who also did well. I helped a woman with the caps who was receiving weekly Taxol X 12 weeks. She hardly shed any hair at all! I'm not sure if the success would be the same for dose dense Taxol.
Mondavie-Get a neck travel pillow. It eliminates that Bobblehead feeling.
I think I know of the woman who will be appearing on the Doctor's show...She is a 'rep' for the Penguin Co. here in Los Angeles. She has no training, other than watching the 15 minute tutorial video and no experience helping others with changing the caps. I hope that she does a good demonstration...This technology needs to get out there.
shipsgirl-Don't include the thermometer when you return the caps! It won't make it to another user. Instead either donate it to the center you had chemo or a new user here on this discussion board.
BTW-Rhonda and Hope, your hair looks fantstic!!!
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Making way, what a shame that the TV show didn't choose someone with experience - like you - to demonstrate and talk about cold caps. If someone is able to watch the show, please give us a report!
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I'm too camera shy anyway
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Hi Shipsgirl, I bought mine on ebay - I paid $27. The person who sold it to me was in ON so it took one day to receive it. Try ebay
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Hi Ladies,
I wondered if anyone ever used a helmet with a sport they love during Chemo and using PCC? Such as mountain biking? It is a sport you must where a helmet with and I miss it soooo much. The helmets are very ventilated and I could pour water on my hair at points to cool down my head. I have my last TCx4 next week and wanted to start sneaking in my rides???? I work out everyday and my head gets pretty hot and then I do a cold water rinse as soon as I am done.
Also, regarding iron. Did anyone start taking their iron before their chemo was over or waited until post. What doses do you recommend on the iron.
Thanks so much!
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Looking good, Rhonda! I have to say that I treated my hair 'normally' for the first time in six months this weekend and it felt amazing! Washed in shampoo that would get rid of some of the build-up from gentle treatment (in warm water!), blew dry, used a curling iron. I look like me! So glad I found PCC!
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301724 - Congratulations! It's wonderful to hear that you are looking like yourself again and enjoying it so.
qrex1 - I was not allowed to take anything during chemo so didn't start iron until afterwards. My onco nurse advised me to get a slow release type of iron as it will not cause constipation like regular iron can. I generally get a generic type "slo (sic) release" iron at CVS or Rite Aid and take 45mg daily. I also suggest that if you are not already taking probiotics that you start doing so to help ward off yeast infections "down there", as the ads say. I wish someone had told me about it.
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301724 - so happy to hear about your good hair day! I can't wait to get to that point, and until then am grateful for the straggly mess I have today
qrex, I did start taking iron after my 3rd tx because my hemo counts kept getting lower...my MO didn't thinkg it would help, so I took that as a 'can't hurt' and started taking the 45 mg a day as well, generic brand from Target. Like Hortense, I also recommend a probiotic - it's so good for so many reasons!
Wishing you all a good hair week!
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Iron doses can be confusing to figure out as they vary by the salts (ferrous gluconate, ferrous sulfate, ferrous fumarate, etc). Ferrous gluconate has been thought to be easier on the GI system than some of the others. I started taking a generic ferrous gluconate (27 mg) once a day when I finished chemo (3 weeks PFC) and took it for three months (until I used up the 100 tablets).
Here's a link that helps explain doses: http://www.drugs.com/ppa/ferrous-salts.html
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Rhonda - your hair is beautiful! Way to go!
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I didn't know how to post a picture so I made my avatar is of my hair toda. I am 35 days post chemo #1 and 14 days post chemo #2 and I still have basically all of my hair. I have had some shedding, although honestly only once did it seem more than normal. The PCC are definitely working in my opinion because I have lost hair everywhere else on my body.
The first time using the caps was brutal for me. I only took Advil to help with the pain of the cold. The second time I actually took leftover pain killers from my port and asked my helper if she was sure they were cold enough because they certainly didn't feel it. She laughed and said it was the pain pills because some of the caps were in fact colder than the first treatment
I wash my hair in the shower using paba free and sulfate free shampoo. And I know you aren't suppose to but I gently work the shampoo into my scalp, certainly not the scrub it's used to getting. I also use conditioner about an inch from my scalp and down so that I am not pulling on it when I comb it out. I only wash it about twice a week though. I wear it in a loose pony tail a lot! I have not worn caps, but have used visors and cotton headbands that aren't that tight.
For anyone considering PCCs, I strongly recommend but they are not for the faint of heart because they are certainly FREEZING! I would much rather have a brain freeze from a frozen margarita that's for sure! However, please keep in mind that everyone is different, reacts differently to their treatment and treatments vary. But I thought it was worth the shot if I was going to lose it anyway!
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Good work, JLow! Sounds like things area going great for you. I did the same thing with my team about the temps...the first cap was brutal and then after that i'd always question them if the others were cold enough and they told me I did that every time! Keep at it you'll be done before you know it and still have your hair!
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Jlow - you look great! So happy for you!
I am starting to get nervous. Day 13 today after first chemo...wondering if it'll hang on.
Crossing fingers.
curly
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Jlow,
Great job, your hair looks great. I agree, I highly recommend PCC. I have two more treatments and my shedding as been reduced as well. Keep up the good work and best of luck to all of us.
Rhonda0
