Cold Caps Users Past and Present, to Save Hair
Comments
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My cardiologist has released me to start back on Herceptin so now I'll see if my oncologist sticks to her promise that she'd drop me from 6 TXs to 4. I am so ready to be done since my face is all broken out, my chest, my arms and my left upper arm is swollen. Of course, we are all ready to be done, I know!
Hair still doing well and hanging in there and I'm so happy I used the EG caps....might have more hair had I used the PCCs but I'm happy and my arm and finger hair is back now too...probably will fall out again. Leg hair never fell out (nor did the down under).
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Hi All:
Please contact Frank with your info about scalp mets ASAP also if you want to give testimony to how the caps worked for you, call or e-mail Frank and Carl right away. I know there are studies that were done about scalp mets, but I don't know how to locate them, so please those who posted them please get in touch with Frank and let him know ASAP. Thanks.
As far as article in Ladies Home Journal and the film, I'm all for it, just private e-mail me and tell what you need.
Keep Positive!
Nancy
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To sebm9:
I think you were the one who had info about articles re:scalp mets, etc. Could you please forward that info to Frank. Thank you.
Nancy
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I'm trying to see if insuance will reimburse for cost of cold caps. Blue Cross Blue Sh said they need the "Medical Billing Code" also known as a CPT code. It is 5 digits. Do any of you have that code? Thanks!
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HI ladies. I finished #3 today. I'd love advice on how to get thru chemo days. They get worse each time. The cold and the heavy cap make me nauseus and tired. By the end of the day i feel tortured. What am i doing wrong???
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LivCar: Ativan and Benedryl got me through.....I was pretty doped up between the two of them. That is the only way I got through it. Congrats on getting through #3!!!! How many more do you have?
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LivCar: I just returned home from my first TC treatment. I feel tired but believe it was due to the benedryl infusion before hand. I also took a klonopin in the morning and a vicodin left over from surgery about an hour before infusion.
I wore an electric throw the entire time which may have help alleviate the feeling of being tortured as I kept my body warm. Especially helpful when icing fingers and toes and sucking ice chips.
Maybe these ideas will help.
The only thing I worry is that maybe since I am warm, I'm heating up the caps too quickly. When they come off my head they are right at freezing.
Now I count down to 14-21 days to see if the caps are working for me. I'm keeping my fingers crossed that my follicles do not commit suicide!
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howard:
I have been trying to be reimbursed by BlueCrossBlueShield since last year!
They keep asking for more things. I keep emailing Frank and he gives me what they ask for and then they call me and say they need something else. Very frustrating!
It is the International branch of BCBS that I am dealing with...
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DebRox: I used an electric blanket for each session from the chest down with no problem.....Glad to hear you got through the first round! You can do this!
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Debrox~ Good for you!!! Sounds like all went well....you did it! I'm with you ...took a vicodin, benedryl and Ativan at each treatment ...pretty loopy but worked for me!
Now trust the success of many before you....you will do great!0 -
I'll send Frank the info on scalp mets; it's not original research, but culminated from various sources (and all previously posted on this list, albeit deep back at this point! how this list has grown! it's awesome in the most fantastic way!!)
I'm a happy chica today: 1 year 3 months out: clear mammogram. Woo hoooo!!!!!!!!!!!!!!!!!! That's a woo hoo for all of us, btw!
Susan
p.s. I had benadryl as part of my premeds, but no steroids or painkillers. I wasn't loopy -- just had the shivers by the end of treatment -- but had lots of stuff like ativan on hand if I needed. If they've made it available and it makes you more comfortable, USE IT! THERE IS NO REASON TO SUFFER THROUGH ANY OF THIS!, she shouted ;-)
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Yeah Susan!!!
LivCar - make sure that you are getting premeds - I think most of us do the benedryl and ativan. I once tried to go cold turkey (no drugs) so i could chat with friends. I lasted about two minutes. If you are doing caps without any drgus, you are one strong woman!!!!! Keep at it, you are getting there!
Debrox - sounds like all went well. I worried about heating up too much, too. I also wore warm workout clothes and used the heated blanket and heated chair. It was the icing of the hands and feet that were so cold...but 4 weeks out and no nail problems and hair on my head. You are doing great!
Still chicken...have not colored hair. My hair stylist called today and we have a date for Thursday. I am tempted to cancel!
It is all good....the caps are working!
Annie
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Ang7: Were you ever given the 5-digit "Medical Billing Code" also known as a CPT code? I talked to someone at BlueCrossBlS who acted like she really wanted to help with the insurance but has to have this code. She was very interested in the cold caps.
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Hi Everyone: Could you please let me know if you have contacted Frank re: the above mentioned items--testimonials/scalp mets studies/etc.
Sebm9: I saw your post above, thanks and congrats on one year and 3 mos. out and all clear--Hooray and Halleluyah!!!
LivCar: We all used an electric blanket for the cold. They should be infusing you for an hour before chemo with all kinds of drugs to combat the side effects, like nausea. You also should be taking E-Mend the day of and for 2 days after chemo for nausea. Try a neck pillow to help with the heaviness of the caps, Bed Bath and Beyond has them for about$9.99. I hope the chair they give you is a recliner, so you can put your feet up and your head back.
Anniemomofthree: You and I are neck in neck. I haven't colored yet, am waiting another 3-4 weeks to do a vegetable or no chemical color job. Will let my hair follicles rest after my cut. Next month I will cut again and do the 1st color!
Again, let me know if any of you got back to Frank.
Thanks.
Keep Positive!!
Nancy
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I've been applying elastogels to my friend who is getting dose dense adriamycin and cytoxan biweekly. The elastogels feel very light and thin compared with the PCC's. At first, we changed them every 20 minutes, because they warm up so quickly. She suffers greatly from the five minute brain freeze with each application, and said that she just couldn't face four hours of post infusion capping at an every 20 minute change. So we change them every 25 minutes for four hours post infusion.
After two rounds, she is day 19. She had small amounts of shedding for the last two days, but her hair doesn't "hurt" the way it did last summer when it fell out with taxotere and cytoxan x 4. We are "cautiously optimistic."
The elastogels are easy to apply (once I get them warmed up enough). They freeze unevenly, and sometimes sit oddly on her head. As they soften up during the 25 minutes, she massages them and pulls them tightly to seat them better. She has five caps. They refreeze in the dry ice much faster than the PCC's. I have learned to freeze them upside down and open, like bowls.
Elastogels use a thin disposable shower cap under the main cap during the capping session. I had a terrible time with the velcro on the PCC's pulling my hair out each time we removed the cap. A thin shower cap might have helped. Wonder if it would have blocked the cold, though..
Cold capping someone else is exhausting!!! Have you hugged your cold cap helper today???
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Speaking of warming up, how warm should the PCCs be after you remove them after 30 min?
Mine warmed up in some places to plus 1.
I just hope they stayed cold long enough to keep my follicles cold. I was ESP worried about my nape of my neck and temples. Hope they were on tight enough. The next 2 weeks will be telling.0 -
congrats DebROx - one down!!
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DebRox- if you still have your helper that we talked about, you will be fine. She knows what she is doing.
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DebRox: I never checked the temps after I took them off but I always felt like after a while they did not feel cold anymore (I guess you get use to the cold and don't feel it so much after a while). When I would put on a new cap it would feel cold again. We checked the temps on my caps going on and every one of them was -32 to -33 degrees as they should have been. You have seen my photos...caps work! Hang in there!
How do we contact Frank? I dealt with Geralyn and have never talked to Frank. I will get something to him...is his email on the website? Let me know.
Like some of you I am completely chicken to color hair with the natural stuff too! I am 3 weeks PFC today and desperately need a color and cut! Ugly - but it's my hair. I guess this way everyone knows it's my hair and not a wig. I am sure they don't sell wigs with 1 1 /2 inch dark roots with gray and straggly ends on hair! LOL!
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So good to hear that everyone is doing so well. I wound up in the hopsital for four days as my expanders got infected during chemo!!! Almost had to have them removed but heavy doses of antibiotics did the trick. When my onc came to check on me, he was so impressed and shocked that I still had so much hair after two treatments.
For those of you having major SE's after chemo, I started going for fluids the two days after tx and that has done wonders making me feel better much quicker.
Chris
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Hi all,
There have been questions about this at various intervals, but as this site grows it is increasingly hard to keep up with the most current information/posts about the way to approach insurance companies for reimbursement for the cold caps.
I know some of you have tried or have this underway, and recall at least one person (in California?) who was entirely successful.
Perhaps those who have the details will write in.
I'd be glad to prepare a bulleted list /flyer about this,a nd make it available. No doubt it would be handy for Frank, and perhaps the Rapunzel folks would post this at their site too.
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thanks for the advice about chemo day. i have all the drugs in me (claritin, emend, ativan). i'll try benedryl next time. i just feel like the ativan is making me too low emotionally. i also think the jiggling while putting on caps makes me feel nauseous. i thought i was tougher than this!!
i also agree about collection this data some where. The tips I've received on this site were better than anywhere else. Because i was new, i had to go back and read old posts. Now that there's over 100 pages that'll be difficult for new girls.
Maria - this was number 3 of 4 DD AC. After that, 4 DD Taxol. I'm almost half way!!
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Ugh my hair just feels so gross. I can hardly wait to wash it on Friday, but know I cannot style it. I'm sure you have all been there done that.
I hope as time goes on it is less greasy/oily. But then again, I need it to be in good condition. This is going to be a long 9 weeks for me - treatment time. Then add in the PFC babying time of I don't know how long.
Right now I am rather anxious about the next few weeks to see if the caps work. Wish me luck!
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Done with Chemo!!!!!
Next stop radiation!! I have 6 elastogel caps for sale if any one is interested only used for two treatments.
Good Luck to all of you just sarting out.
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HOORAY Leann....you must be ecstatic. Congrats. I'll be done soon since my onc is only going to do 4 treatments for me.
So now you have a 4 week break before radiation. That will be wonderful too.
CONGRATS again!
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GOOD Luck Debrox. You'll do fine. You'll get so you dread hair washing day so don't stress over not washing now and your hair actually gets used to not being washed. I haven't noticed a big difference in mine waiting the week which really surprised me.
Arlene
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Hi ladies!
Have you being wearing PCC during the week? I did after my first treatment, every day for 30 min. I had my 2nd treatemnt last week and I have being a little bit lazy. I did great on my 2nd treatment, just nauseas and dizziness. But not headaches, constipation, or bone pain like the fisrt time. Two more treatments and I am done. I' m counting the weeks.0 -
To mgd: You can contact Frank thru the phone #'s listed on the PCC's site.
Nancy
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Tiki: I posted a photo a few pages back so you can see my hair - I did not use them in between my chemos. I did not have access to the caps as my med onc office has them onsite and I was not allowed to take them home. I did fine without doing them in between. Good luck! Glad to hear you hare half way there!
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It's amazing to me how many people still don't know about these caps. I had great success, and now my university regularly sends me ladies interested in my experience. I love being able to encourage everyone. It's so important to be able to look yourself in the mirror on chemo days, see a full head of hair and say "I am healthy and I can do this!!!". I told my husband I am going to need a separate cap cell phone for all the calls I get, lol!!!
Yesterday I went to see the head of a clinical trial I am interested in. Hes chief of oncology at another major cancer center in my town. he took one look at me and told me that I had not been through chemo recently and as such he needed to see more records. Uh, NO!! I finished only a year ago. He said there was no way I could have such a full healthy head of long hair in only a year. I told him about the caps. He brought his research nurse in to look into it. They all think that the caps that were used about 15 years ago...that didn't work, and these are the same thing.
Cheers to all of us pioneers who took chances to bring this one little Ray of sunshine into our lives and help make it better for other others too.0
