Cold Caps Users Past and Present, to Save Hair
Comments
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Jgab - I did TCH (no perjeta) X 4 treatments (quit early due to side effects) and saved my hair just fine with PCC's!
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Hi Phailia, Keep going! I know the feeling but this is the biggest shed and should slow down within the next few days. At least go through with round 2 and then make your decision. I know it sounds crazy, because I thought it was crazy, but someone on the board at one point was keeping her shedded (is that a word? haha) hair in a ziploc baggie. I ended up doing it too because it put in perspective that I really wasn't shedding as much as I thought I was. Once I realized that I was probably over reaching I stopped saving the hair, but it was enough to keep me motivated!!
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My Baggie is sooooo full. Usually my hubby tries to underplay everything. When I showed him the Baggie his face was like "oh shit" then went back to underplaying. I don't have any bald spots YET. If this shedding happens the same way next day 17 I'm totally going to be almost bald.
So your shed was crazy lots the first round? What happened on chemo #2?
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and zinny your hair looks great and you SO DONT look 20 years older!!
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Jgab,
I am doing TCHP X6 (round 4 is tomorrow). I am having a lot of success, I posted a few pictures yesterday. Also, I have a post on my blog that explains those some exact feelings you mentioned, if you want to check it out my blog is www.mypinklife.org.
Another tip I learned, Prejeta counts as a chemo, so what I have done is actually asked to have my meds switched around, I actually do "TCPH". After you have the perjeta you do need to wait an hour until you can receive Herceptin (on my third round and going forward the wait time goes down to 1/2 hour) but your 4 hours after capping starts as soon as you finish the perjeta, so the 1 hour wait time between drugs and then 1/2hr to 1 hour of herceptin all count towards your 4 hours. I know that's a little confusing so let me know if you have any other questions.
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Mypinklife, I've been wondering if perjeta causes hair loss - I did see that hair loss was listed as a possible side effect of perjeta, but then the same is true of tamoxifen. So good to know that you need to keep capping through perjeta
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Zinny
Thank you for posting your photos. I am also on AC + T regimen and feel buoyed by your success! I didn't get my 2nd AC on Tuesday due to a cold and low white blood cell count. Ugh. Could use all positive prayers for my rescheduled date of Friday. I really want to keep moving forward.
Thank you to all who keep posting as I feel I'm amongst friends in the same boat!
Question: Isn't it a good idea to keep combing and getting the hair that is falling out "out" of your hair so as not to get matting? Don't want to overcomb but I feel better once the comb is going through and less is on the comb in the end.
ILoveArt
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Zinny you look great! And no you don't look 20 years older!
Phallia I hope your hair loss slows down. I still think it's worth continuing the cold caps today. Let us know how it went!
I'm at day 27 and my hair loss is back down to normal amounts. That was a rough 4 days! The crown of my head in the back took the biggest hit. There are obvious bald patches but otherwise I look normal. I hope the bald area starts filling in before I'm finished with chemo.
So when I do my next cold cap, do I need to cover the bald parts so they don't get frost bite? Maybe I'll just cover the spots with hair.
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Dancetrancer,
I have followed your success with cold caps. Did you have carb and docetaxel? I am so nervous and hoping for success!
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mypinklife,
Your results are amazing! It gives me hope! Are you doing carb/docataxel?
You are over halfway done! Thank you for documenting
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Jgab - yes - I had taxotere (docetaxel) and carboplatin and herceptin. I was fortunate, as you've seen, to have great success with PCC's. Wishing the same for you! I don't recall any another capper who did TCH and failed - all success stories on here for that regimen - per my memory (I do have some chemo brain - that's my qualifier, or at least my excuse, lol!).
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Ok, night before Taxotere one of four. Cut shoulder length hair to this easy style few weeks ago when last colored. Bags backed caps cooling. Testing elastogel caps mits and socks*switching to dry ice around 8 tomorrow morning for 1:15 pm premeds. Caps going on 50 min early.
Husband is my partner. Check back in soon!
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7of 9- you've got this!
Hope all this shedding stops ASAP!!!
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7of9,
You look adorable with that haircut! Hope your first treatment went well today!
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The firs 10 minutes are the worst.. Of the first three caps. My husband was a superstar nazi temperature checking, tying the hood hat down tight and didn't let me stop til four hours after. I move my hands and toes a bit but still feel they will get some benefits. The nurse was impressed with my veins so looks like no port for the last three. Now well go on hair watch for the next 30 days....
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7of9- I'm glad it went well! Your husbands sounds like a great guy! Hopefully your side effects will be minimal. Was anyone else cold capping while you were there?
I had to go get a shot today and despite how much hair I believe I have lost, they couldn't tell at all and are still amazed I have hair a month into this shindig. It made me feel better. I looked in the mirror this morningand hair or no hair, a sickly looking person looked back. They didn't think I looked bad at all. I take myself way too serious but this is some scary shit.
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go 7of9!!!!
Runner70 - I know understand why they give the LGFB classes. We all look a bit like shit!!! However, it is temporary, and we can convince others, and ourselves, albeit a little less so, that we are not so different from normal. It just makes it easier to get through, for me anyhow, if I make the scary person in the mirror look a little more like the old me. But shit, at chemo today, my hands looked so old!!
Today was my 7 of 8! Head just thawing now after 9 hours of caps. Flex that hidden strength, ladies...
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Well, I had round 5 of 6 on Wednesday. Business as usual. Repeat after me, ladies -- 1) TGIF! and 2) A Bad Hair Day is better than a NO Hair Day!!!
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Hi ladies, I haven't posted in awhile but I just wanted to show everyone a few snapshots from our wedding! And my HAIR, a little less than 4 months after my last chemo! Cold caps WORK!!
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they're beautiful!!
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Tshire, congratulations! I remember when you first starting posting here and I'm so glad cold caps worked so well for you. You're a beautiful bride (with beautiful hair!) Thanks for sharing your pictures.
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Tshire - beautiful! And look at all of that hair! Amazing.
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My mo and head nurse both said today my hair will fall out:(
They're bumming me out after all this work
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Amazing photos tshire you look gorgeous - thanks for sharing and Congratulations xoxo!!!
Good luck 7of9, sounds like you and your husband are a well oiled-machine.
Zinny, I'm feeling you. I sometimes don't recognize myself when I look in the mirror. Thank god for make-up but my damn watery eyes!!!!
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TShire - congratulations! You and your hair and your dress are beautiful!
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Phaila, don't give up yet! Lots of doctors and nurses are very skeptical about cold caps. Don't let them get you down.
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Phaila, My docs office did clinical trials for PCC's and they had a freezer and their own set of caps there so they were very familiar with them and saw lots of patients use them. They kept saying "well they only have a 40% success rate" and "don't get your hopes up".....I was so pissed they would be so discouraging. Many people do not follow the protocol and they do lose hair. You have the support of all of these experienced cappers with the right protocol....you will be ok! You will have hair! Hugs and hang in there!!
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tshire - your photos gave me chills! So beautiful! So happy for you!!!
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Tshire...thank you for sharing!
mdg - Heads up... major cold capping trial at my hospital (I did not qualify for with damn local recurrence) but most AC people are loosing hair anyway - but they are getting it back 2x faster than usual and those that are doing the Taxanes after the AC are growing it back while still in treatment. Most Taxane only chemo patients are keeping 50 - 60% of their hair. Enough to freak about but most enough to walk around in public without wigs or coverings. Do cold cap one hour before and do the full 4 hours after! Attivan and oxy if you must. I got a wonderful tip from a previous cold capper who called me, she said the first 2 caps only wear for 20 minutes. Your head is warmest then and it heats them up quick. Start the chemo 10 minutes after you get the third cap on and it should go 30 minutes though use your laser temperature gauge (pic up Sears hardware) to check those caps. I had some that warmed up quicker than others and my husband changed them mostly 20 - 25 minutes. The after caps I did closer to 30 minutes and drank like a fish to flush the meds out though I didn't walk as planned I was so sleepy from all the attivan and IV benadryl.
I agree with the gals ranting about how ugly our hands, arms and skin looks but thank goodness spring is coming and we can focus on looking at nature and not us. By fall we will all be more beautiful than the autumn leaves again!
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Other tip is we brought two coolers with dry ice. One for the cold caps which were the most important to me, the other for the hand / feet mits which I didn't want to open the cooler with the caps any more than necessary. I think we could have used a little more dry ice though the local dealer chatted up with my husband that they are selling more and more of these to husbands coming in to pick up for their wives and he's hearing good things. I want some smaller bags of dry ice in addition to the stuff we got this time - that fit inside the cold caps (about softball size ish?) next time to help cool them faster and deeper as I was daring and only went with 3 as elastegel said I could do it with three. The elastagel caps were only about $110 each and I figure we can (and are) planning a nice vacation with the cost difference of the penguins (well, airfare to California anyhow in August). Honestly I may get a fourth one for next time if hair doesn't blow out before my next treatment. My husband switched something up and I noticed by the 4th or 5th change he had them cold enough again at the start though wearing an electric blanket felt good, I think trying to stay a little chilly may help the caps last longer. The dry ice my husband picked up the morning of treatment (in afternoon) was minus 9 I believe? The guy said it would hold that temp for almost 24 hours. I also wore a hair band around my arm and stuck a toe warmer/hand warmer packet it in to keep my iv arm warm to help support my veins.
I did not have much neuropathy from the Taxol last time 4 years ago so while I did do the mits and feet, I only cooled them during the taxol itself. I changed the gloves 3 times but the feet covers only 2 times. I wore thin thin gloves because I couldn't stand frozen fingers, took them off after 5 - 10 minutes then switched. Feet used thin socks and they were still darn cold. Got 30 minutes out of those.
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