Cold Caps Users Past and Present, to Save Hair
Comments
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Hi there!
I see that you had A/C and I'm wondering did they give you EMEND anti-nausia??? I start A/C next week and my prescription is for EMEND and the company website lists hair loss as a S/E so I wanted to know if you also received EMEND with your A/C. I've kept ALL of my hair through 4 rounds of Taxotere!!! I don't want to lose it b/c of the anti nausea.
IF you did A/C and you received the EMEND did you keep your hair???
IF you did A/C and you didn't have EMEND what anti-nausea did you have??? I'd like to tell my doctor to change my prescription.
THANK YOU!!!
Lisa
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I had Emend with TCH (different chemo). No problems. Emend is the cadillac of antinausea meds - does a great job. I personally would not worry about the Emend. Now people who are on AC tend to lose more hair than other chemo's, but many have still had success.
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lkmelby, I did 4 rounds of AC; 3 of them with Emend. Thank God for Emend!!!! The puking on the first round was horrible.
I don't know about Emend causing hair loss but AC certainly does. But though my hair is thinner, I still have lots of it. No one else seems to notice. Loss was biggest in round 2-3 and then, for me, tapered off considerably in round 4. It is different for everyone of course.
Good luck to you!! While there's hair, there's hope.
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Congratulations lkmelby11 on your progress! I hope all goes well with you on the AC.
So veterans, I looked at infared thermometers on the Sears website and there are 96 different ones and some of them are really pricey. Any recommendations on one to get that is effective but not more expensive than is needed? Or does anyone want to sell me theirs? I don't want to cut corners with a peice of equipment that is so cruicial but I didn't expect them to cost so much!
I found 60 qt Igloo coolers on the Walmart website for only $27.88 a peice which seems like a really good price.
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Marsha - Ebay. I paid $16. Just make sure it can do Celcius and can go to a low enough temp (I think Penguin says it should go to -50C). And when it comes time for infusion, make sure you have a spare battery.
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Thanks shipsgirl,
Guess I shouldn't have deleted my post. I found a recommendation for a thermometer earlier in the thread and didn't know it would look like that on the thread. I'll check out ebay. I see some that low but with no technical details.
update--I think I will go with the Mastercool MSC52224A Non-Contact Infrared Thermometer with Laser on Amazon for $48
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curly - I'm on taxotere-cytoxan X4. Had a looooonnnngggg talk with the MO at the office today. turns out my calculations were correct and my dose was too high. Not hugely too high - but still outside the recommended dosage. Any inaccuracy when dealing with drugs like these is discomforting.
My height was entered into the system incorrectly - found that out when I insisted they remeasure absolutley everything today. Hoping no real damage done to my heart or other organs. Vein is fried though and now I have to get a port. Don't know what that bigger dose will mean for my hair...
You know how they ask you umpteenhundred times for your full name and DOB during office visits? Well that will be coming right back at them. What is my correct height?...correct current weight?...and correct dosage? Thanks.
shipsgirl - having just come out of nearly two weeks of agony - i really feel for you. sending healing hugs. PatinMN's question about weekly vs. bi-weekly sounds like a good one to ask your MO.
schoolmom- another check mark in another one of these worrisome boxes - YAY! congratulations
lkmelby - thanks for pointing out the possible hair loss side effect with Emend. I hadn't heard that - and we are in the process of adjusting my nausea meds since I had such a hard time with the Zofran. I'll have to look into Emend and compare it to the Compazine possibility.
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Kaydee - omg, how upsetting to find out they made a mistake! I wouldn't be surprised if it was the same issue with me. Sounds like you have some kind of science background and know what you are dealing with, which is great. I'm sorry they messed up with you. As for the heart damage, talk about scary. My hearbeat has been high since having my first dose of Tax. I even went to emerg to have it checked, as i could feel it beating abnormally - very disconcerting. They ruled out a heart attack - well gee, thanks. Sent me home after my 6 hour wait.
As for Emend vs. Compazine - the studies i read about seem to suggest Emend says that hair loss is a side effect for the pure fact that it is used on chemo patients (who would already be losing their hair due to the chemo drugs). Zofran/Compazine also show up with the same side effect. I have been given Emend only on the FEC portion of my TX and did well with my hair. I was not given Emend for the Taxotere portion because they think nauseau is less on Tax than on FEC. I actually threw up the day of Taxotere but only that once. Stomach doesn't feel great in general, but it is tolerable. More of a nuisance than anything. I wouldn't worry about the anti-nausea drugs being an issue for your hair.0 -
Thanks for the info on hair loss and nausea meds curly. And no I don't have a science background at all! so all of this is really scary for me. But I thought I should learn about dosing since I would be getting these potentially life changing drugs pumped into my body. It's determined by body surface area- so I just plug height and weight into an online BSA calculator and it does the conversion for me.
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kaydee - I am so proud of you for questioning your docs and getting this issue corrected!!!!! And I'm so sorry this happened to you. Thank goodness you got it fixed before subsequent infusions. This was one of my main paranoias. I too calculated my own dose, confirmed with them what it should be prior to my infusion to make sure they did the calculations right, and then always checked the bag for the correct dosage and my name after it was hung. If I was allowed to, I would have wanted to observe them mixing my drugs in the drug room. ha ha ha Yep, I'm a control freak. However, having worked in healthcare, I KNOW people make mistakes. I don't trust anyone. I wasn't taking any chances when it came to chemo. Mistakes with it have serious consequences!
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Kay and Curly I am SO sorry you have had to go through this. You are right to question things! The docs and nurses are human so we should be double-checking them. They should weigh you EVERY time! We are our own best advocates, for sure.
Kay the caps should have done their job and kept most of the chemo out of your hair follicles, even though it was a higher dose than you needed. It is the rest of your body that was not iced that suffered the most. Poor thing.
We all shed a scary lot at first, it is all the old dead weak hair coming out- and we all fear the worst, but the caps do work.
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Kay,
Brava for double checking!! Good for you. That is something I never thought to do and now I will do religiously.
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I took Emend and kept my hair, but I was on T/C. I was given a three pill pack and had to take one the day of chemo and one on each of the two days afterwards. I did shed for a long time and ended up losing 30-35% of my overall volume, but always had full coverage. Most people could not tell I had lost anything. I think my shedding was due to my chemo, as most people do shed their oldest hairs.
I started regrowing a thick crop of hair about a month or two after my final chemo which is filling out my hair's volume rapidly. It's about 5" long today, eleven months PFC.
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Hi ladies....I am a fellow cold cap user and I am now about 3.5 months PFC. I still have hair!!! It works! However, the shedding continues to remain fairly strong and i'm wondering how long is this supposed to last? My hair is considerably thinner since I finished the cold caps and I'm worried I won't be able to sustain full coverage for much longer. I can't even tell if hair is growing back yet.
Any other PCC users experience shedding this long after treatment? For this reason, I am still not coloring my hair nor have I gotten a trim/cut. Ugh. I can't wait to color these horrid roots but I don't want to risk losing too much hair.
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kaydeesmiles-I applaud you for advocating on behalf of yourself!!! I swear people are too often treated like a number. I bet they wish we had one tattoed on our foreheads... I've been to many clinics, I was at one that as part of their standard of care gave Ativan to ALL their patients! While some might find it helpful, the woman I was helping didn't want it-it acts as a sedative. It reminded me of the movie, "One Flew Over the Cuckko's Nest" where they just sedated everyone to make the staff's workload easier.
Can you or Dancetrancer please post something in relation to BMI and dosages for the commonly used drugs Taxotere/Cytoxan and provide an easy example i.e., 5'2" 100 lbs.? It would be very helpful to refer to.
Dance-You remind me of me! LOL I question everything and for good reason-I've seen too many mistakes! One instance was when a chemo leak occured. The nurse looked to blame it on the patient, suggesting that she might have been moving around too much because of using the caps...what a stretch, she had only lifted her other arm once and didn't get up from the chair at all.
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ndmk - my shedding continued for a full FOUR months PFC! Eeeks! But it did stop eventually. And, it's hard to see the regrowth - I can't recall exactly when I started seeing mine, but check the nape of the neck. That's where I noticed it first.
I waited a full 6 months before I highlighted mine, but highlighting is much more damaging than coloring...I know others have colored earlier than that with gentle type of coloring products without issue.
makingway - I feel the strong urge to say...cuckoo, cuckoo!!! LOL
I am a demanding patient, for sure. Oh well, no one else is going to look out for me more than myself, so I do what I need to do to protect myself! If a nurse or doctor doesn't like it, screw em. (Oh, I'm in a mood today!)Here is a link to estimate body surface area:
http://www.halls.md/body-surface-area/bsa.htm
There are different equations you can choose to use, I picked the Mosteller one. No rhyme or reason, I think it may have been the one I read about the most, but not sure.
My current bsa is 1.54 m2. (meters squared)
Next, you have to find out what your dosage is for your particular chemo. For me, it was TCH. I think my dosages were as follows:
T (Taxotere): 75 mg/m2
C (Carboplatin): 6 AUC (area under the curve)
H (Herceptin): 4 mg/kg
Tax is the only one here you figure out using bsa. You take 75 mg/m2 X 1.54 m2 to get the grams needed: 116 grams (rounded) of Tax would be my dosage.
I forget how to do the AUC, but I can look it up in my notes if anyone wants to know.
The herceptin dosage is easy - find out your weight in kg and multiply it by 4 to get grams of herceptin needed for your body.
Your doc may use a slightly different formula, but the numbers should be in the general ballpark to what you calculate.
Hope I remembered this right - someone correct me if not.
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Thanks Dancetrancer!-I'm sure that post will help a lot of women! Maybe you should start a new thread on just that, so others will know. I've gotta say the lengths we have to go through at times to get proper care...My Onco refused to give me a prescription for a chest x-ray, which, is something I've wanted for the last 3 years because of the pain I've had since surgery. I suspected the pain could in part be due to metal clips, I've read of this possibilty. She gave me excuses, said an MRI would show any clips. She also told me I had to first have a diagnosis. I suggested, "How about breast cancer,will that work"?! Needless to say she wouldn't provide me the prescription, so, I went to my GP and he gave it to me. As I suspected, I have an enormous amount of metal clips running from the axilla up and over my chest. It's wrong that we have to struggle so much to receive decent care! I'm curious to see if the MRI will show the clips as well as the x-ray...
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makingway, why are there metal clips left in your axilla and chest? Is that normal procedure? It sounds awful!
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Hi everyone I will be starting chemo in June not looking forward to it of course. However you gal are really brave I only hope I can hold up as well as you guys are. I just need to know where do I get the cold caps for my hair I do not want to loose it. But if I do oh well it is what it is. Please give me some pointers on every thing.
Thanks waiting to hear from you all0 -
Hi Gma,
Sorry you have to join this club no one wants to be a member of, but we are here for you every step of the way. Knowing you have a choice to keep your hair will make you feel more in control as you plan your treatment. Check out penguincoldcaps.com to get started and bring us your questions. Hang in there, it absolutely does get better and you can do this!0 -
makingway, that stinks. I know there are sometimes metal clips put in instead of stitches, I think in the node area. I wouldn't expect tons like that, though. I wouldn't be surprised if they have developed scar tissue around them and are the source of your pain. I hope you get resolution of your symptoms. Cancer. The gift that keeps on giving. I survived my first endometrial biopsy today (expecting benign results). They had to do it to make sure Tamoxifen isn't causing some "abnormal" bleeding I had. I'm pretty sure it is just my period coming back erratically. Will know 100% for sure in a few weeks when the path comes back. Fun times! (Honestly, the biopsy was NOTHING like the pain I had been told to expect - thank goodness!!!)
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Please let me know where to get the COLD CAPS. I WILL BE NEEDING THEM SOON.
Thanks
Gma040 -
Hi ladies,
I did the CC's on AC DD and continued to shed all during and post chemo to the point of baldness. I received a paltry refund that was laughable so I called and spoke to Frank. He gave me two non-working email addresses to complain to. When I orderered the caps I received neither confirmation, terms, receipts, etc., all of which violate terms of doing business in Texas. I'm tempted to contact the attorney general or my credit card company. Any suggestions? I'm so happy for those of who this worked for but dealing with the company has been shady at best.
Thanks for any help!0 -
Welcome Gma. I am so sorry that you have to be here, but I know you're up to the challenge.
To get caps, go here http://penguincoldcaps.com/contact-us/ and you can call someone that is closest to you.
Watch the video, read the site and we'll help you in any way we can. THis is the place for your questions and concerns. These women are incredible and so very strong.
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PatinMN- Clips aren't always, but commonly, used. Of course they don't tell you this prior to surgery. I found out by reading my 'Operational Report'. I also discovered they had lost a needle in the surgery room, later found, where they didn't specify. But, most disturbing was that I learned that my scapular artery was 'sacrificed'...Really!!!
Dance-I want to get the clips removed, the implant out! and have the fat grafting surgery in Miami. But alas, I don't have insurnace that will cover it, I've already checked. I even sent Dr. Khouri a couple of letters. Glad your biopsy wasn't as bad as expected. Yeah, the gift that keeps on giving...
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makingway - sorry to hear your insurance won't cover the fat grafting. I'm pretty sure it has to do with what codes are put into the system, but I don't know the details. There are more docs getting trained every day, so perhaps it will become more mainstream soon. BTW, Dr. Ahn in NYC also has a good reputation for fat grafting. There are a few gals on here who have posted their experience with her, one of which had pain for 16 years from implants and is doing so much better now.
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Gma04 - Most of us rented Penguin Cold Caps as they seem to have the best most reliable results. They run roughly $1500 for the treatment, at least mine did. Its website will explain how the process works:
www.penguincoldcaps.com
You will need to recruit a helper or two to change them for you during your treatments as you will not be able to handle them yourself. If your center does not have a freezer that they can be kept in you might be able to get one donated to it by the rapunzel project. A number of women on here have done that.
www.rapunzelproject.org for more information on saving hair during chemotherapy.
Success depends on how carefully you follow cold cap protocol and advice. Do NOT use any chemicals on your hair for several weeks before starting chemo or your hair may suffer extensive damage/breakage. Mine did after I ignored that advice and lightened my roots six days beforehand.
I used cold caps during my Taxotere/Cytoxan infusions and was able to keep my hair. It did thin out uniformly as the oldest hairs succumed to chemo, but I always had full coverage and other people could not guess from my hair that I was going through cancer treatments. I lost about 30 - 35% of my pre-chemo volume. My hair continued to grow throughout my chemo treatments as evidenced by the healthy root growth of dark hair in contrast to the blonde rest of my hair.
Do you know what chemo you are going to be getting?
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ndmk - How are you? I have been thinking about you recently.
I shed for 16 weeks after my last chemo, which was rattling. Then it literally stopped overnight. I didn't lose another hair for about three months when normal shedding restarted. I have read on here that others had much the same experience. You are almost at 16 weeks. I'll bet your shedding will stop in about 10 days. Good luck!
The hair I lost due to shedding must have started to regrow quickly even though I couldn't tell that it was growing until about two months after my last chemo. I had just about given up hope when I discovered an army of 1/2" light colored new hairs coming in everywhere. For some reason I had not been able to spot them when they were smaller even thorugh I had been parting my hair and looking carefully.
I now have a good 5" of new healthy hair filling in uniformly all over my head 11 months after my last chemo treatment and my hair looks great. People actually doubt that I have had chemo when they see me and I find myself having to explain cold caps to skeptics. My normally straight hair has come in a bit wavy, but that seems to be ending. To my surprise some areas of my roots are very pale, others medium and a few quite dark grey. My hairdresser said she has seen that happen before.
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TXSockMonkey - I am so sorry this has happened to you. Have you called Frank back to tell him the email addreses were not good? I've never spoken to him, but others seem to rave about him. I have always spoken to Geralyn who's nice but seems overworked at times. It took several requests to get a copy of my invoice from her. You might give her a call. Who was your contact?
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dancetrancer - thank you so much for your BSA breakdown. I use a different calculator but they all work the same. I also chose the "Dubois" formula because it gave me the biggest BSA number and I was really trying to match the doctor's calculations - but my numbers came up lower every time.
I started a thread to share what happned to me and on how to calculate dosage. I hope it helps somebody.
http://community.breastcancer.org/forum/69/topic/806394?page=1#idx_1
makingway - i always wondered about those clips! I remember when I had my biopsy and it was only at the last minute before sticking the needle in did the doctor say anything about these "markers."
as for me - it's hair wash day which is a little before schedule ( I have infusion #2 on Monday.) I'm getting a port tomorrow and am afraid I might not feel up to washing on Friday. Hoping for minimal shedding!
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