Cold Caps Users Past and Present, to Save Hair
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thanks bridetobe! im just nervous about all the prep work and things involved! can you tell me more about what you did for prep i have chemo for the first time next friday going to fill out the paper work and fax it tomorrow. how fast did you get the caps?
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jpmercy,
I just emailed you some info!
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jpmercy~ Welcome to the PCC board. You'll find a wealth of information here regarding the caps and tons on women who have used them successfully. I finished weekly Taxol treatments about 8wks ago and have a full head of hair! Weekly Taxol is thought to be less harsh to start with, and the caps WORK! I'm 40yrs. old and also had a BMX prior to chemo. I felt the same way as you did, PLEASE don't let me have to lose my hair also. You can email Frank (he's the founder of PCC) or call the # on the website. He will get back in touch with you. He's very good at keeping contact with the users and instructing them throughout the process. I was handed down the caps from another user in GA. who also had a complete head of hair 3 weeks post-chemo. I will try to get you the name of a rep. in your area. I know there are several women around your area who have used them. They have posted on the board. One way to look is read throught some of the previous postings; I'll do the same and see if we can't put you in touch with them. Good luck! Keep positive...you'll find lots of support here!!
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thanks GA
question for you, how big was your tumor after DCIS? mine was only 2mm but with HER2 3+ so my onc wnat to treat bc of hte pathology and my age, it was a hard decision as a major cancer center told me to do nothing, i felt like if this is in clinical trials right now i should do something!
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jpmercy~ Found the rep. for the MI area (gmp300) she can possibly help you get in touch with Frank quicker. You may want to PM her for advice! She's really great and was a tremendous help to me!!
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jpmercy~ I know exactly how you feel and can relate completely. I too am HER2+++ My invasive ca was 8mm, hidden within my DCIS tumor, which was 4cm. Post BMX I had 2cm clear margins. It wasn't until path. came back from the removed tumor where they found the 8mm of invasive ca. The original recommendation was for TCH every 3wks. for 18wks. I went for several opinions before I chose the Taxol weekly trial. I had read quite a bit prior, and felt this was best for my case. My MO agreed completely. The key is the Herceptin, unfortunately it requires a chemo. drug to attach itself too to be successful. Research hasn't quite been able to get Herceptin to work alone on bc just yet. It may come in the future. I know the decisions are difficult. I chose to go ahead with it due to my age, and size (8mm). I did have to stop treatments @ 6. I developed severe neuropathy and had a terrible skin rash from the very first treatment. My MO felt strongly that my body had reached it's maximum toxicity levels & the neuropathy would be worse if I continued. I'm currently on Herceptin every 3wks until June. I felt good through treatments otherwise. I was able to keep working throughout as well.
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Hey jpmercy~
Like GAgirl01, I was diagnosed as Her2+++.
I was so against chemo running my life. My first onc. did not believe in the Cold Caps so I went to another one who was willing to try them. Keeping my hair did so much for my self esteem. I was able to do things with my kids, actually push myself a bit to fight against the side effects and spend time with my children. I tell everyone that will listen about the Penguin Cold Caps.
Sending hugs your way...
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Anyone have any suggestions for hair spray cuz I absolutely have to use it for an upcoming wedding. Just a little of course....
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Hi Everyone, (I use Elasto-Gel Caps)
I am so glad to hear some of you are finished or nearly so. I pray for you all each day and at night when I get in bed. I think of you often.
My fourth of four AC treatments is tomorrow. I am glad it is going to be over. The nausea is still an issue, and my tongue feels as if someone poked a nail through it, and my gums bleed and I am not able to brush my teeth and can only rinse. I drank LOTS of water this last week, thanks to your encouraging words, and I was definitely not as tired and felt better overall.
I am still trying to make a decision on continuing the treatment with Taxol x 12 (weekly) that is part of my doctor's treatment plan after I finish the AC tomorrow.
Anyway, I am off to bed, my treatment is in the morning....
Oh...I have the pictures, but haven't figured out how to post them here.
I am losing my hair at a 'normal' non-chem rate right now, have lost very little body hair, but didn't have much to begin with, and have lashes and brows still (I hear those may go after chemo is finished). OH...and my hair seems to be growing....at least at the top of my head....and it is growing in black there, but still blonde everywhere else....has anyone had their hair grow during chemo? It is about 1/2" long (the black part). The crown of my head is the thinnest, and just in front of my ears (if I had sideburns). I so excited to have my own hair on my head. I don't think I realized just how devastated I would have been if I were completely bald....though that sound so vain...it seems like the only thing I could try to control.
God bless all of you.....you are ALWAYS in my thoughts and prayers.
Peggy
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Peggy!!! So happy to hear from you. I have definitely been thinking about you and hoping that you are doing well! They picture you have posted makes you look like a teenager but I know you have grown daughters so you must look a lot younger than you are. I am so happy for you that your hair is holding up! Good luck on your last AC. That is definitely worth celebrating. If it's any conciliation, people seem to have a much easier time with Taxol then AC; especially weekly taxol. Lots of good thoughts heading your way for tomorrow. Please stay in touch!
GAgirl - so glad to hear from you too!! I had no doubt you were doing great. I'm all done with rads so it's H for me too until May. About to start Tamox in a few days.
I'm happy to report that after washing my hair for the first time since coloring it, it feels all the way back to normal. It probably is a little thinner than before and it seems I may not have to wash it every day like I did before. We shall see.
Good night warriors!!!
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peggy: yeah! last one tomorrow! Have faith in whatever decision you make about the taxol. So glad to hear about your hair. You are definitely an inspiration:... you are very blessed to have such a strong and close family!
Drim: Sending you such warm thoughts of happiness about everything! Nice to hear still from those who are finished with chemo cuz it really helps to hear about the 'after 'life':) I can't wait to do the same!
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starting cold caps this week for weekly taxol! any tips send them my way!
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Hello: I also am starting the cold caps Friday, for 4x TC chemo. I still have some questions maybe someone can help--how much dry ice for 14 caps? IWill they keep overnight? (my appt's at 9 AM). Do the dry ice pellets work or will they sublimate too fast? Also, what about hair color? I see that Colormark is recommended but are there any products my hairdresser can use if it doesn't go directly on the roots? Many thanks!
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Hi Everyone! (I use Elasto-Gel Caps)
Drim & Emster, thanks so much....it is such a help knowing that I have others encouraging me along. I have decided to start the Taxol (weekly x12) and see how it goes. My chemo dr. is checking to see if the study I am referring to was weekly Taxol or the 3-week regime.
jpmercy & Lucky60....
I use the pellets, they are much easier to work with and they don't sublimate too fast. I bought 20 and 25 lbs...but 15 seems to be enough for me with my six caps. I always have enough with 15 and it is still in the cooler for 2-3 days. I put a folded towel on the bottom of the cooler, and one on top to help last longer....this is what the retailer told me to do.
Make sure the cap is touching all of your scalp, press on it to see if it is touching,
Wash your hair in the middle day of your treatment, I was on a bi-weekly AC treatment and washed my hair the Friday or Saturday after. I did get used to not washing daily, something I would never have expected. The chemo is very drying and doesn't make washing as necessary, my scalp did seem to ooze something, and I would use a damp cool cloth to pat my scalp.
Comb your hair as little as possible and as gently as possible, starting at the ends and working up to the roots. Hold onto the hair as you comb it so that there is as little tugging as possible on the roots. My own hair is very fine, but still looks okay....but, at this point, any hair is good!
Use a sulfate-free shampoo, I use LOreal Everstrong (green bottle) and Fat Hair (red bottle) both bought at Walgreens. Sulfate-free is supposed to gentler, and I think it is.
Be prepared for a larger hair loss during Days 17-24....it does slow and stabilize.....even when you aren't sure it will......I kept thinking if I lost any more, I'd have to do a comb-over! I think when our doctors and all the literature says our heads will be bald, it is hard to believe that we will have hair after this is all over. I only wash my hair once a week and when I do, it looks nice, but the in between days no so good...but I think that is because I roll it up and pin it to my head trying to avoid any more damage. Some of us lose more than other, some less, but it is worth it.
Don't forget, take something to prevent a headache about an hour before your first cold cap goes on, and to use something on your forehead. I used a shoe insert, though I bought the moleskin. The shoe insert $1.99 was thin and wide so I could cut it to fit my whole forehead and hair line.
Drim & Emster....LOL, I have always looked younger than my age (57), but right now, I look terrible...pale white, dry skin, and thin hair that is very dry. I hope to come back to 'normal' after all of this. And so many of the women I have met that have fought breast cancer, seem to glow! I am guessing it is the glow of victory...this is the biggest challenge any of us will ever endure.
The nausea is still a big problem, even with all the medicine. I am pretty sure the AC is just keeping my stomach raw, and sore....it gets better about two ot three days before each treatment. I was told week three of AC was the worst, but, I was determined that it not be, so, I drank tons of water and ate lightly, and rested as much as I could stand. Week three was better than week 2....I didn't drink as much water that week. Week four (this week) I am drinking lots of water, taking my hair vitamins and determined this week will be better than week three. Some days it is hard to be so determined but my attitude toward all this seems to help when it is positive.
I did have to stop working, I was too nauseated and some dizziness and weakness.
I am hoping the Taxol is better. I will do all 12 or as many as I can, unless the research I found included the weekly Taxol protocol. My doctor said his only concern is if I have negative reactions to it.
These are my reactions to the AC:
My lymph nodes and tumor cannot be felt now
Nausea, dizziness, fatigue (but, this was not too bad), some weakness by week 3, very dry skin and hair, a bright red mark across the bridge of my nose each treatment which lasted about 3-4 days, sometimes also on my cheeks, but no bumps, slow healing of cuts and scrapes.
Week 1 & 2 I could brush my teeth with ease, but my tongue was sore, by Week 3 my gums and mouth were so sore I could only rinse, and my tongue was so sore I couldn't brush at all. My gums bled profusely, and eating was difficult because of my tongue and roof of my mouth and cheeks. That went away two days before my next and last AC treatment that I had this past Friday.
And, of course, I have hair......yah! It is thin, but enough I can still go out, but I am more comfortable under a wig since I had so much more originally. LOL
So, overall I am doing well.....and in two weeks will begin Taxol for 12 weekly treatments. I sure didn't want to go the chemo route, but I must say that the results, so far, are good. I have changed my eating habits, but have not gone to extremes.
Cold caps are definitely worth the effort and it was a good decision.
My thought as with all of you...take good care of yourselves, and yes, I think of you all often.
Peggy
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Lucky 60:
I did the dry ice pellets with 14 caps, could only fit 5 in a 50 quart cooler due them being in the plastic bins. So, I end up lugging 3 coolers with me. Such a pain, but well worth it as I'm almost 3 weeks out of my 2nd chemo of 6 and still have hair with just normal shedding. Hope it keeps up!
I had talked to someone who told me they did 30 pounds of dry ice the day of, so since I buy the day before as the place who has it in pellets closes at 5pm... he told me to buy 5 - 10 pounds more so whatever is lost overnight I'd end up ok the next day.
I bought 40 pounds the first time around and then 50 the 2nd. Definitely too much with 50. I'm planning to go back to 40 this week. I kept it all in one cooler with towels filling up to the top as the dry ice guy suggested to keep from evaporating. Then in the morning I got my caps out of my freezer and put them into the 3 coolers with layers of dry ice on bottom of cooler, over caps, sides and then top. I put a towel in each cooler on top before closing.
It has worked 2 times now, the caps stayed cold. Also, better to be too cold and have to get out earlier than you need them, than not cold enough. My friends would check the next cap about 10 minutes out. By the end of the day the last were very cold. They had to take the last one outside in the warm air to knead it! But, again, better too cold and warm them up rather than not cold enough.
Make sure you have a thermometer. I bought one at Sears for I think $80 that reads cold enough. It took me a while to find one that goes that cold. Most go high, not low. It's a Craftsman infrared thermometer.
And definitely get the mole skin for your forehead. Dr. Scholl's or I bought Rite Aid brand. Look in the foot care aisle.
When the caps are on, make sure it's straight and covering your hair line. If you can bear the first minute or two of each cap, then you'll be ok. That's the worst part, first time each one goes on. Drink plenty of water and eat.
Good luck to you!
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Hi, I bought my thermometer at Sears for about $15.00 in the Kitchen area, it goes to 20F below./30-C and is made by Taylor
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Hi jpmercy and lucky60,
If you send me an email at sebm9@earthlink.net I can send you my "guide" for how I did the caps including ice, hair care, everything. We used 100 pounds of dry ice pellets for 14 caps in their keep boxes, in three ice chests. We set it up the day before and it kept just fine. In fact, it lasted for a couple of days. In a hotter climate it might be different, but if the pellets are kept together (they came in 50# bags about the size of a grocery sack) they'll keep each other cold and last longer. Once they start being dispersed, they start to thaw.
Best,
Susan
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peggy: Your attitude and outlook in itself is just an inspiration! We will all get through. Can't wait til christmas time! The dry skin bugs me alot too! you will do great with the taxol as I'm sure the AC was the tougher of that regimen. Many prayers to you!
michcon: Here's to #3!
seb and drim: So glad you guys still log on with all of our awesome "pearls of wisdom"! You are sooo appreciated!
jpmercy: I sent you a private message:) sorry so long!
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hi girls, i have 5 more taxols (one tomorrow, Monday) ok well i have hair still, but not much at all, the shedding continues everyday and really not slowed, im thrilled to have a head covered but i look i like Mo, not much hair below my ears at all but what is below my ears is shoulder length and so thin! i know it wont last another 5 weeks, but on top seems to be stronger and been growing since chemo started on june 18, it too is very thin but i think that will make it. if anything i should be able keep about about4 inches. i hope!! better then starting bald. I need to remember i was on hard core chemo and prolonged, a total of 16 treatments, so i feel lucky to be able to have some hair so no complaining from me : )im soooo ready to be done with chemo
love Chey
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Oh Chey~
You have such a strong attitude!
I am praying for all the Cold Cap ladies...
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chey: you ahve gone through so much and still you endure! You are amazing! 5 more also is awesome. Can't wait til you are done! You are a beautiful person, inside and out! Will pray for you. God will never forsake you, He will help you always...
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Hi Ladies I haven't been on this thread in probably over a year. At that point, I had done a ton of research on cold caps for my BC and posted links to help everyone else convince their Oncs that they work.
Now, my sister's been diagnosed (Mucinous and Her 2 Positive) and I'm playing catch up. I see that a new company Elasto Gel also come out with cold caps and I plan to read thru all the posts that I've missed but for now, I could use some quick help.
Does anyone have any research that's come out in the last 12 months that show that cold caps work ? I'll check Frank Fronda's site but anything else would be greatly appreciated.
Edited to Add: Im also looking for names of Oncs in the NY and NJ areas who've had first had experience with patients who successfully used cold caps. It's shocking how many Oncs out there still respond that Cold Caps dont work. I'm thinking that even if the research results can some way be dismissed, a fellow onc's first hand experience will be given more credit.
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MTG:
Just reading through this site convinced me to do the Penguin Cold Caps. I've done 2 rounds of chemo and still have my hair, just normal shedding so far. My onc said my hair should have fallen out about 2 weeks after the first round and definitely by the 2nd round, so he is now convinced it is working. I won't really know for sure until I get further down the road, but every indication is pointing towards them working. I'm 6 weeks out of 1st chemo, about to do my third this week. Almost everyone says (that I've talked to) their hair started falling out between 1st and 2nd chemo.
So, at this point, I'm feeling good and highly recommend the caps.
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Michcon - Thanks for the quick response, but I'm already convinced ! I just need resources - both new reasearch studies and local Oncs who have seen cold caps in action - to help persuade my Sister's oncologist.
When I was diagnosed last June, I read everything I could find and decided at that time that I would use cold caps if I had to have chemo. I had several lovely conversations with Frank, owner of Penguin Cold Caps and my brother talked to the guy who owns Paxman Coolers, who apparently is also very nice. Ultimately, I made an educated decision to skip chemo so I never actually used them.
Now that my sister's been diagnosed, she's had the chemo decision to make. We meet with her Onc for the first time this week and I want to make certain I go in armed with up to date info.
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MTC - So sorry to hear about your sister but she is very lucky to have you! I don't know of any new research studies but my Onc in NYC is pretty convinced that this works and they are getting a freezer sometime soon from the Rapunzel Project. She was interested in the caps when I first approached her about them and after seeing them work on me she knows they work but isn't convinced they work on all regimens. I had TC x 4 and now after almost 3 months PFC my hair is back to normal probably a little thinner than before (but only I know that).
I will PM you her name.
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MTG,
I too am done with the caps and did a bunch of research before using them. I figured it would be my best ammo in convincing my doctors. I guess you already have the 2002 and 2005 european papers. Do you have the 2009 Dutch study? There is also a Quebec researcher who is currently conducting a trial with the cold caps (I think she's using PCCs and Dignicaps). She doesn't have data yet, but she did publish a study that disputed the link between cold caps and scalp mets. Let me know if you'd like any of those papers.
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BridetoBe - Thank you, I'd love to see both the 2009 Dutch study as well as the research disputing the link between cold caps and scalp mets. It's interesting; I had always believed Oncs when they said that there was an increased risk of scalp mets. Since the caps keep chemo from the scalp, it just seemed logical. Of course, now I realize that since they were also telling me that Cold Caps didn't work - which I knew to be wrong - I should have doubted the scalp mets premise as well. I'll pm you my email address so you can send attachements.
Drim - Thanks for the name. As I mentioned in my PM, your hospital seems to be the most progressive and accepting in the City when it comes to Cold Caps. And boy, would a freezer make things easier. I've never heard of the Rapunzel Project but what a great idea and great name !
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Hello Ladies! I am a former PCC user and am very happy with my results. I have been following these posts and am so proud of each and every one of you!!
I have a question for anyone who has already colored their hair after using the caps. I am a little over 6 months past my last chemo and am wanting to color my hair. I just talked to my hairdresser and she recommended a demi permanent hair coloring that washes out after a few weeks. She said the developer isn't nearly as strong as normal hair coloring. Any suggestions on what hair coloring has worked in the past would be great!
And for the girls currently using the caps, I know from experience that it is alot of work and can be uncomfortable at times, but you will get through it and be glad you used them. I had 4 treatments of AC and 4 of Taxol.
Take Care, Kelli
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Hi Kelli~
I know my hairdresser used a vegetable dye? She said it would be the most gentle. It did wash out after a bit. I was so nervous about doing my hair. The hair soaked up the dye very quickly. Next time we are not going to leave it on as long. My hair is very dry and that is probably why...
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Hi Angie,
Thanks for the suggestion. I am going to research it more since I have a couple weeks before I can get in there to have it done. How long have you been done with chemo? If I remember correctly, we had chemo around the same time.
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