Cold Caps Users Past and Present, to Save Hair
Comments
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Hello All,
I have been fighting breast cancer for the last year. I lost my hair and now it is returning...I am asking questions for an acquaintance who is 23 weeks pregnant, has two young children and was just diagnosed with ILC. She recently lost her mother to cancer and is concerned that losing her hair will make her two young children fearful that she too will die. I told her what I had heard about Penguin Cold Caps....she did some research and reported they rent for $450 a month in her area. This is not affordable for her family. I am reaching out to ask if anyone knows of alternatives.
Casey
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Casey-See if you can find someone in your friend's area using the caps. Perhaps they can split the expense. You can also try collecting donations so that she can afford to rent the caps. There's a site called Caring Bridge where you can post a blog and share updates. Worse case scenario she can get some Elastogel caps, 8 would be a good amount to have because you would need to change them more frequently, as they heat up faster than the Penguin caps.
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Casey if you start a caring bridge please post the link or PM me, I will contribute. I bet others would as well.
Poor girl, I cannot imagine going through this with little ones and I bet saving her hair would indeed help them feel like life is more normal.
For me, the fact that I wasn't bald helped reassure all my workmates that all was well (even on days when i felt like total doggie doodoo) so indeed might have the same effect on the kids.
You are an awesome friend to be helping her like this. And you look great with short hair! I have a huge lumpy head, it would have looked pretty scary without my hair.0 -
ckolendar - Penguin is the same price everywhere as they are rented, roughly $500 a month. Sharing with someone would bring down the cost. I have met women who used them because they did not want their children to see "sick Mommy", so it's very reasonable of her to be interested. Does she know which chemo she will have? T/C has more regular success with cold caps than ACT.
Perhaps some of her friends or relatives could run a fundraiser for her? That's often done in my area for people who are sick to help them cover costs not handled by insurance.
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I was one of the mom's that had a young child and I did not want him to see me that way. He was 4 when I was dx and he will be 7 this summer. I have not told him I had cancer yet. I will tell him when the time is right. I was very happy I used cold caps! Maybe other people in her life would donate and help her out....CaringBridge may be a good way to go. Sending prayers for her....
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Be careful about sharing cap expenses. The pcc agreement does not allow it. Don't share info with them.
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Penguin does permit sharing - I was mistakenly sent the paperwork for it, but charges each patient a bit less. I think it is about 2/3 instead of full price.
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Good to know. I guess they don't publicize that.
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I had one of those moments you lovely ladies talk about! My last chemo is in one week and today I met with my radiation oncologist to start scheduling that phase. The nurse said "You're almost done with chemo? But you have your hair!". And the doctor said the same. The nurse had never heard of the caps but the doctor had. They both asked a lot of questions, which I was happy to answer! I think I still have 95-98% of my hair with one treatment left so I am quite happy.
I'm still offering my extra supplies to anyone (free of charge) starting chemo after I'm done on 6/6. The complete list can be found in my post on 5/20. Good luck to all no matter where you are in this crazy journey.
Susie0 -
I had my third TC treatment today. I met with the nurse practitioner beforehand and convinced her to stop by the infusion center to see what cold caps were all about. She asked a lot of questions and I may have made a believer out of her. The infusion nurses are a tough bunch and I'm not sure what it will take to get them interested.
My side effects for the first two treatments were not fun, but manageable. Feel fine Friday and Saturday. Things start to go downhill on Saturday night and Sunday and Monday I feel like crap. By Tuesday I'm back at work, still not feeling 100% but I push through it. By Wednesday I'm back to normal. Hoping this time will follow the same pattern. Only one more treatment!
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Yay Jc! Only 1 more to go. That's great!
I had #4 yesterday of 6. This is the Taxotere portion now. I am scared of the side effects and the nurses/pharmacist were sure to point out this would be worse on my hair than the "FEC" portion. How nice.
Normally I am pretty upbeat during infusion times, but yesterday i was a mess. I had a meltdown during the infusion and all the way home. Just cried. Crazy. Was down all week. My hair is so much thinner. Still decent coverage and the ponytail is a good camouflage for the thinning. One nurse pointed out how my hair was crazy thick before so she could see the difference, but think she still thought it looked fine. Lots of smiles on the other nurses and commentary on how no one else has done this there before and they are all amazed. In between chatter, i still cried. I hope this sad feeling dissipates. It doesn't normally last this long. Maybe all the drugs? Wishing to be done already. 2 more to go. ugh. I was so ill the whole time and eventually tossed my cookies. I even gave up on the last hour and only wore the caps for 6 hours instead of 7 post infusion. I hope i didn't do myself in. But I figured rationally i now don't have the major thick hair i had when i started, and most of you wear them for 4 hours, so hopefully 6 is pretty good still. I guess time will tell.
curly0 -
Oh Curly, I feel for you. Seven hours is such a long time to wear those caps after treatment. I'm so relieved to rip that final one off my head after 4 hours! I'm sure at this point it won't make much difference if you stopped at six hours yesterday. I don't understand why you have to wear them for that long anyway. I know you have thick hair, but like you I have thick hair, and have to cool the caps to a lower temperature than I would for hair with regular thickness. But I still only leave them on for 4 hours after treatment. I thought the length of time coincides with the time it takes for the drugs to circulate in your system. Is it possible that you had to wait 7 hours because of the drugs you were receiving and maybe now that you're switching to taxotere you can reduce the time to 4 hours? Maybe you can ask Geralyn? (It's also possible that I have no idea what I'm talking about!). I hope you're feeling better today.
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lol...thanks jc for the note and the giggle at your last line. You also motivated me to check in with geralyn. seems logical to me that the shorter time should work. i am not one to give up, especially on my hair, but i just felt so crappy yesterday. still emotional, but a bit better today. Got my butt up and trimmed the front yard a bit. But it's too hot. In 10 minutes i was way too sweaty and just came inside and had some ice cream!
The combo of the 3 drugs from last time took 1 hour on IV, same as one hour on Taxotere. I have no idea, but am asking Geralyn.
How are you doing today jc?
xo
curly0 -
Susie congrats- arent those moments fun? I also love to spread the word.
I think the infusion nurses are afraid of delays or extra work if too many people start doing this. They tend to be overworked as it is. We were careful to make it clear we would not inconvenience them, and then they were fine at my place at least.
JC- three down! I hope you are feeling okay this round.
Curly, so sorry to hear your last round was so hard. Hey, you are not alone- all of us break down in tears sometimes. None of us asked for this, we are just trying to get through it one day at a time.
My hair had some thin spots where the caps had seams- I could see some scalp in those areas. I covered them with a few sprinkles of the "Toppik" fibers from sally Beauty. No one could tell.
Now the hair in those spots is over an inch long, it came back in fast, since the follicles were less damaged. I still dont have other body hair! (TMI I know, but it serves as a good control).
I am rooting for you!!!!0 -
Thank you science gal. Helps to hear from those that have been there. And i would never guess you have thin patches based on your pic...you look amazing! Yay for you!!!
xo
curly0 -
Thanks- I used coconut milk shampoo by organix before taking that pic- it really fluffs my hair up. I am still just washing once or twice a week thogh so it isnt always that fluffy. But it is getting more "normal" with each passing week.
I wish you the best of luck!0 -
Yesterday was AC #4. The last infusion of the Red Devil!!!
Everything went smoothly except we were scolded by some officious woman who clearly doesn't like the inconvenience of cold capping. Apparently someone tripped over a cooler recently. But there we were, tucked away discreetly at the back of the waiting area, using as small a footprint as possible and she still had to come over and say something. She said they weren't going to allow it - "but you can finish of course",
I told her that the alternative was to have a dedicated biomedical freezer so that there would be no need for coolers. And I asked her if they would really take away the possibility of keeping our hair. She then acted like it wasn't up to her and there would be a meeting about it. She had this fake smile on her face but I could tell she was sooo annoyed.I just wrote to the women on the British Columbia thread to get help with whom I can contact to appeal our side of the story. Some of them seem to be well connected at the Vancouver centre and hopefully they can tell me how to go about it. I went to the centre before I started my first chemo to discuss cold capping with them to find out how to make it work without disruption to them. I was shrugged off. I'm only the second person to do it there, but a couple of others have started behind me.
One of my stongest reasons to do caps in the first place was to contribute to others by blazing a trail and educating. This might be my opportunity to have a bigger impact. I don't see how they can deny us the possibility of keeping our hair. I think they just need to come up with new ways to accommodate us.
If you wise women have any suggestions, I'd be grateful. Our medical system is different than the US because it's socialized. The Cancer Centre is run by the governmental medical division. There aren't competing centres that we can take our "business" to.
Curly, I found myself wondering about my 5 hours. I think it's because someone recently posted that her centre had questioned Penguins post-chemo times and said they were barbaric. I would love to know if there's proof that we don't need to wear them so long. But for me, I pushed through because AC is so hard on hair and I didn't want to risk it.
But I also get that you were just at the end of your rope and needed to be done. I'm sure you didn't do any harm. After all, your hair isn't quite so thick now, so perhaps you don't need it so long. I can't imaging that 1 hour would make that big a difference.
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I checked in with geralyn. She said on taxotere to slowly go down from 5 to 4 hours. So hopefully 6 was just fine. Frankly, i am just mentally worn out. Surprised myself actually. I have been very upbeat most of this time, but this week was a toughy. Hope to get back to myself soon.
thanks ladies for the support. it's so nice to be able to vent here to people who understand.
sciencegal - will check for the coconut shampoo - have read that coconut is very good for you.
shipsgirl - thanks. Does this mean you are all done???? I hope you are!!!
xo
curly0 -
no Curly, I have 4 more of Taxol. But it's a little easier than AC because there is no nausea. But it's a 3 hour infusion so that extends my cap use by 2 hours.
Glad to know your 6 hours won't hurt your hard work.
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POST INFUSION TIMES FOR WEARING COLD CAPS- Most are suggested to continue wearing cold caps for 4 hours after their infusion. Rarely, is it more than that. I honestly don't believe there is any science based studies to support wearing the caps beyond the 4 hours. When Penguin cold cap use began 4 years ago the 'after infusion' time suggested then was only 2-3 hours, and they still had good results. The 'after infusion' time is based on the amount of time for the liver to process the chemotherapy drugs out of your system. Your doctor should be able to provide you with this information, or you can do a search on the internet for the package insert. Geralyn is not a doctor. She is a representative for the Penguin Co. and ships the caps. Frank, the inventor of the caps is also not a doctor. He is the inventor of the caps. If the chemotherapy drugs you are receiving have a longer half life than Taxotere then it would make sense to wear the cold caps for a longer amount of time. If you read the drug insert provided for the drug(s) you will receive you can find the 'half life' of the drug. You can also do a search on the internet. Here the package insert for Taxotere http://products.sanofi.us/taxotere/taxotere.pdf
Page 12 describes the half life for Taxotere with half-lives
for the α, β, and γ phases of 4 min, 36 min, and 11.1 hr, respectively. Mean total body clearance was21 L/h/m 2.This is also important and good reason to deter constipation:
Elimination: A study of 14C-docetaxel was conducted in three cancer patients. Docetaxel was eliminated in both the urine and feces following oxidative metabolism of the tert-butyl ester group, but fecal excretion was the main elimination route. Within 7 days, urinary and fecal excretion accounted for approximately 6% and 75% of the administered radioactivity, respectively.About 80% of the radioactivity recovered in feces is excreted during the first 48 hours as 1 major and 3 minor metabolites with very small amounts (less than 8%) of unchanged drug.
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As we've discussed before, there's precious little science around the cooling times. The Paxman system (not readily available in the US outside of clinical trials) has info on recommended post-infusion cooling times. They recommend 45 minutes for taxotere! Info can be downloaded at: http://www.paxman-coolers.co.uk/recommended-cooling-times
Note that their system is different than PCC but it does point out the real need for study in this area.
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Anyone have success with ACT treatment and Cold cap use?????? I have VERY thin hair.
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My doctor, who has been doing her own study on the effects of chemo on cold capped hair of dozens of women, has found that success - keeping full coverage - is less likely when a patient is having ACT than T/C. It's a powerful brew. If your hair is very thin to start with my guess would be that the shedding most experience when using cold caps might leave you with so little as to not cover your head fully. I could be wrong. I hope others will chime in here.
Best of luck with your treatments.
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Ladies,
My mom is set to start chemo on the 12th. She originally was going to have it last week but we wanted to buy time to get the cold caps.
I've been told you have to have a certain sized cooler. What size should I go buy? Also any other advice? How long does she need to keep it on? What are things we should do to prepare?
Oh and can she brush her hair at all after chemo/using the cold caps? We have VERY curly frizzy hair.
Thanks!!
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ChelseaAshley
I bought two of these coolers: http://www.amazon.com/Igloo-Roller-Cooler-60-Quart-Ocean/dp/B002VQ9PU2/ref=sr_1_1?ie=UTF8&qid=1361981428&sr=8-1&keywords=igloo+60+qt.+ice+cube+roller+cooler
I don't know where you are located but I want to give them to anyone who can use them after my final treatment this week. I am in the San Francisco Bay Area. I also have other supplies I'm willing to ship to anyone (doesn't have to be local to me)
The cold caps should come with specific instructions on how long to wear them based on her chemo regimen and hair type. I do not brush my thick hair - I only use a wide tooth pick (very gently, holding the roots to my scalp as I comb)
Best of luck to your mom!0 -
Hello ladies, it's day 11 since my first chemo my scalp feels a little sore as if If I had been earring it pulled to tight in a bun or something is that normal
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Hey all,
I'm now just shy of 6 weeks PFC and starting to just feel like myself again. (But still tired. Shocking, I know. Ha ha ha! I used the cold caps and retained most of my hair. It thinned but no one knew I was a chemo patient by looking at me. (Thankfully, b/c I was bald when I went through chemo the first time around 18 years for Hodgkins and hated it.) PCC were amazing.... even when at times they were hard to wear.
! Anyway, I believe my hair has jsut now stopped shedding, and i'm thinking ahead a little to when I can use an all natural organic color. (Not the color mark.... did that and had great results, but i'm talking all over color. Chemo sucked the color out of a lot of my hair. UGH) Wondering what brands people used that gave them good results. My hair is naturally dark brown and I can't wait for it to be dark brown again. LOL! I'm NOT complaining here.... I'm so glad I have kept my hair. LOL!!!!! Just anticipating having a pretty color again. !!!!0 -
Leslie...I had that same feeling like I had been wearing a very tight ponytail and it made my scalp sore. Many of us have had that....I guess that means it is normal.
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Ladies, interested if anyone has use either Nioxin shampoo/conditioning regrowth kit or Keranique regrowth kit with minoxidyl. My last chemo was Jan 7 and I have trimmed the frizzy ends twice and started semi permanent color about 6 weeks ago. I can color/cut the beginning of July but probably going to wait until end of summer being in and out of pool I will probably pull it/clip it back. I thinned alot and have frizzy texture in the hair that stayed. My once past the shoulder length thick hair is now primarily chin length,brushing my shoulders. Underneath about 3 inches growth max and about 2 inches growth at temples. Some other spots about 1 inch growth, primarily in the back of my head.
I am guessing it will grow another inch or so before end of summer but wondering if anyone has tried these products and if so, what results. I am still using phosphate free shampoo but have to admit I started some regular conditioner about 3 weeks ago. HELP! (Also, take daily Biotin for nails/hair starting about 2 months ago.)
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Amrdbit, Congrats on your success with cold caps! it really is sort of miraculous, isn't it? I have dark brown hair too (well, I used to before it turned gray). I used Clairol Beautiful Collection to color my hair at about the stage you are now. I found out about it from our predecessors here on the cold cap board. It has no ammonia and no peroxide. I had my regular color person apply it. The first time we used it I was afraid to process it the recommended way (by sitting under the hair dryer - I didn't want to heat up my follicles). it gave me some coverage - looked a lot better than my very long gray roots, but the color was much lighter than the rest of my hair. About 4 weeks later I had it colored again with the same stuff, and sat under the dryer as recommended. That time it covered beautifully! But...this type of color does wash out, and as it washed out my hair started to get a greenish cast - not attractive. Also, until I had washed it 4 or 5 times, the color would drip off any time I worked out and my head sweat, or if my head sweat at night. I ruined a few t-shirts and had to keep wiping brown sweat off my face at the gym. Now I'm using the regular color at my salon, but still dealing with the 2-1/2 inches of hair that is lighter than the rest. My color person used some red to cancel out the green, but it still doesn't look right. Maybe next time she can get it back to normal.
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