Cold Caps Users Past and Present, to Save Hair
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Yea mdg!!!
What a great feeling...
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HIP, HIP HOORAY MARIA. Congratulations on your success.
Arlene
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Hiya again. Thanks heaps to Leeann and Arlene and Chey for the elastogel info. My friend's first round of adriamycin and cytoxan is tomorrow. I'll let you all know how her hair fares.
Oh, tara, I remember how desperately hard it was to make treatment decisions. Keep asking questions of everyone, get 2nd and 3rd opinions, and trust in yourself. Clarity will come.
Congrats, mdg, on finishing!!! We should be passing out bravery awards to each other. In the meantime, I salute you with a virtual mug of steaming, hot cocoa.
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Hi Everyone:
Had my first Herceptin alone, post chemo today. Not bad, no icing fingers and toes and head. Kinda felt naked and light headed--literally, since those PCC weigh a lot! Also had bilateral mammograms and ultrasounds too. Dr.said all looked okay. Passed the 1st hurdle, now I am going to have a 2week rest in florida and then come home for 7 weeks of Rads. We do what we must.
I asked my onc. about the 4 rounds of TC vs 6 rounds, and she said it wasn't my regimen, it was another and yes 4 was the new protocol, because 5&6 didn't add anything.
Hooray for Maria. Ain't it Grand to be done!!!
All you ladies in the midst, don't worry you will get thru it and you will have hair. I promise!!!
BTW, I am shedding more now since chemo #6 is done than all 5 times before!!
Keep Positive!!
Nancy
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Chey: my start time was 20 20 then chemo starts 10 minutes into the 3rd cap at 30. You did 30 30 20?
A friend just wrote me tonight; she has Big Hair (bigger than mine) and did ACT with PCCs, and the caps were fabulous. I'm thrilled!
Tara: Chey is right. Pick the medical treatment that will be best to treat your cancer. The Side Effects, including hair loss, are all treatable.
Best,
Susan
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Congratulations mdg!!! Have a great sleep tonight!
Susan
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Congrats Maria!!! It worked. You are DONE, DONE, DONE!!!
Update...in case you missed it, Nancy did a great post on April 21 or 22 (thanks Nancy) with pracital guidance from Frank on what to do and what not to do (color, cut, etc). It was great info. Thanks Nancy. Not sure how I missed it the first time.
Great news - I saw my hair stylist. She cut my hair just 1/2 inch and it made a huge difference in how it feels, looks, etc. I love it! I am just 11 days post final chemo. And, per Frank's recommendation I am going to do a vegetable color in just 3 weeks. YEAH!
But the best part...my hair that I lost on the first one - due to caps being too small - it is all growing back and kind of long, like an inch long. What we had ended up doing was putting the eyebrow strips on the back of my head for TCH 2-6. That must have been cold enough to help the hair grow from January-now. So excited, that it is on its way....my hair stylist could not believe it!
Now, I am putting on a cute hat and heading on a field trip with my 7th grader....he would have had a hard time if the hair was not on my head. Thanks to Frank, Carl, EG team, ALL the sister Penguinistas, who have gone before us and all the lovely ones who will go after us. It is unknown path with many twists and turns, but somehow we all come out on the other side of this a bit older, a bit bruised and worn, but we are here finally healthy and ready to start new journeys. Maybe we do actually become warriors...
Love to you all!
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Great posts today ladies. For those of us just starting, this stuff helps get thru the dark moments. mdg - big cyber hugs to you. I hope you celebrate appropriately!!
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Yay!!! MDG, your done!!!!!!!!! good job lady!!!!! another one down!! so exciting!!! im so happy for all you girls! a few more of you only have a couple treatments left, praying and thinking for all of you.. hehe your almost there
and it's working!!!!Anniemother, well said!! i never woulda have got through it without this site, and all the girls,PCC, EGC. and for me,the June chemo girls!!! Livcar is right,this takes the dome outa what we are going through, it makes us all smile when we hear these great stories
chey
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Yea for you Annie. Hope your outing was great!
Odd thing today, well I shampooed yesterday and I notice all the tingling, creepy feeling after shampooing so I thought "what if I use my caps" so I did nearly 2 hours of caps this afternoon and perhaps it is my imagination but the tingley, creepy, itchy feeling went away. I've only been doing the caps at home the week after chemo because it seems to disrupt my hair but I'm a believer now.
Arlene
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Maria!!! Good for you!!! Congrats on being done!
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Congratulations Maria -- that feeling of being done is wonderful.
Colleen
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First of all congratulations to all who are done. Just reading all of your helpful comments makes it easier for me who is in the middle of the chemo of TCH, 2 down and 4 to go. and then Herceptin for a year (but that does not cause hair loss.
Tomorrow is my chemo and I have a few questions for those of your who are more experienced and/or are using or have used Penguin cold caps. 1. I understand that Claritin helps with bone pain after Neulasta shot. When do you start the Clartin and for how long? 2) I read that that putting frozen peas on fingers and toes while getting Taxotere helps prevent neuropathy (numbness in finger tips, feet. Do you put the frozen peas in the ice chest with the dry ice and cold caps or will that freeze them too much? 3) I still have problems with Penguin cold cap temperature, sometimes the sides are like -20 and the middle is - 50 when they are taken out of the dry ice. How do you get the temperature to be more uniform? While I am kneading the caps to get the temperature down the sides temperature goes down even further Suggestions appreciated. 5) To Prevent tangles I have been using conditioner with cool water because I think that would be better than tugging on my hair. I rinse out the conditioner well before drying my hair by patting it with a towel. The sulfide free shamppo and conditioner I have been using is Bioken Enfanti which they say is very moisturizing. I bought it at beauty supply store, they say it is very moisturizing. I hope that is ok cause my hair seems very dry. It guess it must depend on what is happening with your hair. Probably Need to weigh risks of having the conditioner weigh down the hair possibly vs. having dry and brittle hair which may break off?? .
The clinic I am going to only allows one visitor to be with me in infusion center. . I explained that these are not "visitors" but they still will not allow in the infusion center For those of you who may have a team of volunteers do you get them fully trained before they start putting on caps. I find it somewhat difficult when I am having rotating volunteers who may live at a distance and the instructional video does not deal with dry ice . Also ideas welcommed on how you are all thanking your volunteers. They are truly angels. .
Thanks to any of you who would like to comment on questions.
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For those of you who are having the tingly itchy feeling after shampooing and Arlene who posted earlier on this, Maybe this is what is happening- perhaps putting the cold caps on after a shampoo shrinks the hair follicle and makes it less irritated from any residue from the shampoo or conditioner. Making it numb or cold may simply reduce the itching due ot vasoconstriction. This is just a theory. I can't imagine that putting on the cold caps would be harmful in between treatments but is it worth the bother? It sounds like it helps. Are people who are doing this just taking them out of the freezer and how often do you rotate them, every 30 minutes? Thanks for information
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ArleneA, they say that wearing the caps during the week really helps, i only had the creepy crawlers for about 3 maybe 4 weeks, but every once in awhile i had that tingling feeling throughout chemo, try not to worry! your almost there
Serenity, for the sides, we put dry ice in zip lock bags to set on the sides while my sis was working on the middle to warm it up a bit, it work really well and we could get it all to temp,
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Susan, yes your correct, thank you. i transposed the numbers, love the pic, your hair look great!!!!
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It does feel great to be done with chemo! Still can't believe I am finished!
As far as claritin...I take it the morning that I get neulasta and take it for 4-5 days. I also take an Aleve with it. I did not take it on my first round and felt like crap. I took it for the others and felt great.
As far as icing fingers and toes. My onc office has an ice machine. I use regular ice for fingers and toes. I wear socks on feet and use 2 quart size ziplocks. I fill them part way with ice and put them on the floor. I put my toes on top of the bag and then fold the other part of the bag over my toes and just stay still. As far as fingers...I use sandwich size bags filled with ice. I put on thin knit gloves and grab the baggies - pushing my fingers down in the ice. I then have my DH put socks on my hands and up my arms to hold them in place so I don't drop the ice bags. The socks also catch the dripping as the ice melts.
As far as cap temps - I can't help with that as my office has a PCC freezer so I did not use dry ice at all. I hope someone else can help with that.
Since I will be washing hair this weekend...I will take a photo and post me with my PFC hair after PCC's. My hair has not been washed in 6 days right now, so I will spare you all from looking at that...ick!
Thanks so much to all of you for supporting me with PCC's. I was quite nervous when I started all of this and your kindness, support, information and encouragement meant more to me than I can explain. I will continue to hang on the board and return the favor to other's going through this journey. Feel free to PM me with any questions. If you are considering the caps and are nervous I just want to tell you it was not bad at all. I was so scared I would not tolerate the cold but it was so doable for me. I made my friend video my very first cap so people could see my reactions and how I felt. I have it on video that I can send to someone if they are wondering what it may be like. You can also see me with my head garb on -the mini pads on ears and the oh so stylish moleskin on my forehead.....gotta love sharing these special moments! Anyway - it's available if it helps someone....I have no shame at this point!
Happy Mother's Day to all you amazing moms too!
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Does anyone remember a post about a Joan Rivers product for hair touch ups?? I could swear I read it on here. Trying to find it ... my roots are starting to come in.
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I use colormark. Works like a charm. My BFF said she could not see my roots...and she would tell me the truth...we are honest with each other. I got it at Ulta. Google around...you can find it online or in some beauty supply stores.
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Yes, it was Joan Rivers hair powder....not sure who was using. I do remember the person saying it was great for thin patches!
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mdg ... is that marker kind, or the wand? Thanks for the tips ladies!
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It's like a mascara wand with a little sponge on the end. It has worked well for me. I did not dry any powder.
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Looks like I am going to be taken off the Herceptin. My EF function (after one TX of Herceptin) is down from 77% to 50-55%. Guess I'm done with it but we'll see what the onc says next week when I go for TX #3. Cardio says chemo can cause the heart palps and reduction too but he really knows nothing about Herceptin.
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Arlena, im sorry, there is so much to all this, the AC is known for heart problems as well, i came in at a 75% mugga scan, that is good but. I'm afraid to see what is is now after the chemo, i will go to a cardio DR soon and see, Its like we have to give up one to fix the other..Sucks!!! it will be ok, try not to worry, this is insurance for us!! keep pushing!!! hehe your almost done!!! those cells don't have a chance!!!!
love Chey
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Arlene - yet another lesson in letting go of things we can't control. It's crazy. It'll all be behind you soon. Have a great weekend!!
Gals - Happy Mother's Day to the other mom's out there!! i have two ... 2 and 11. For THAT, i'm super lucky!!
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Hey Arlene I am so sorry to hear about the Herceptin. Im on TX 3 and I am
Going to ask my Onc for another Muga. I am thinking of ou and my prayers are with you .0 -
Hi ladies checking in.. You all sound great. Congratulations mdg!
I am approx 10 weeks PFC. I am experiencing some of the same things PFC others have posted. My eyebrows are extremely thin, in process of losing eyebrows and eyelashes now. Even though I used Latisse faithfully. I have maybe 2 eyelashes left on lower lash line and only a few more on upper lashes. I lost a lot of hair around ears, i suppose it is technically bald there.It does look a bit like a mullet... We had the straps so tight around my head that my face looked like a cabbage patch doll. Still lost hair there. My hair is long and all one length so my bangs will have to serve as top and sides for a long while. It is still worth it to have hair. I iced my toes with frozen peas (frozen with dry ice) despite that I am losing 2 toenails. I iced hands and feet faithfully - last chemo nueropathy hit hard. We added supplements and nueropathy is resolving. I am writing
this post to add my data - I think it is not so strange what is happening to me at this stage because others were generous in sharing their experiences PFC with similar components. I am still shedding regularly. I am also starting to see hair grow. Something else somebody touched on - I went through a period that felt like the chemo had stripped my nerves or something. That is passing too. Odd stuff that chemo. So that is what my 10 weeks PFC looks like. Btw Karens hair supply has the Clairol no ammonia no peroxide hair color plus the root coverup powder. I will be coloring my hair this weekend and seeing how it works. Wish me luck.0 -
Ladies: Thanks for all the nice comments. I'll get through this as will all of us. It is a bit unnerving that I will probably have to stop the Herceptin but my onc wasn't so negative about it given my Stage 1A status and no nodes involved. So I have to say a prayer that all will be well and must KEEP POSITIVE too. I'm pretty sure she won't drop me down to 4 chemo treatments though. Getting some of the good foods that fight cancer like the Wild Blueberries which I picked up today...those are supposed to seek out any cancer cells and wipe them out. I know we aren't supposed to have high antioxidant supplements but I'm told it is ok to have the high anti-o foods.
LivCar: So true....I can't worry about that which I can't change. Good advice.
From what I am reading, it sounds like TX#3 is one of the worst so need to prepare myself because #1 was 2-3 days of bone pain and then #2 was just a yucky, yucky feeling for 5-6 days.
Thanks everyone...it really helps coming here.
Arlene
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For Claritin: I was on it during chemo because it was the height of hay fever season, but my nurses (in the orientation) recommended taking it the morning of the Neulasta shot and for 2-3 days after (or more if needed).
For icing fingers/toes: I found little Rubbermaid-brand ice gel packs for lunch bags, they came in little cubes about the size of an ice cube. Used the regular freezer (but could be quick-chilled in dry ice but don't place them directly on dry ice). Put a couple in my socks for my feet. Used two "orphan" socks as mittens and put a couple in there for my hands.
I was quite a site: bulging cold socks, bulging cold sock-covered hands, a big blue frost-covered turban on my head and a friggin pantiliner on my brow!
I wouldn't let ANYBODY see that picture until I was done with chemo, but wouldn't you know that was the one that ended up on Good Morning America? My family will never let me live it down :-)
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Hi everyone,\
a few comments /suggestions on using dry ice and PCC's
Just completed today round 3 of 6 of TCH. Halfway to go Taxotere and Carboplatin and a full year of Herceptin. Yeah- still have hair and I know everyone is watching at the clinic I go to, since most have been quite negative about using cold caps. I wish they could see the posts on this list. For those of you using dry ice and PCC's. I bought a little more dry ice 2 days ago because of hot weather (110 pounds) so I could break a dry ice block up to put on the sides of the caps which almost never seem to get cold enough. I just put a small amt of dry ice encased in plastic bag on top of part that isn't cold enough fo a couple minutes when cold cap is folded open. Often I find that some parts of the cold cap are too cold while other section too warm so this helps. Schleping the dry ice is more difficult but worth it. 4 days ago I went hiking in Yosemite and was happy that I could stil hike and better yet did not have to wear a scarf, or wig while hiking. For those of you on San Francisco peninsula or south bay, the dry ice can be costly about $120/ purchase. If anyone wants to sharecost of using the dry ice together and this might be possible depending on timing of our chemos, please PM me. Or just want to discuss logistics of using dry ice and coolers. I use 3 coolers because I could not find 2 60 pound ones that PCC recommended. I hope that is ok? It seems to me that the main thing is having the temp right and the ice caps sandwiched in between the dry ice blocks.
It has been really hard to make myself a priority with children, elderly mother, life's demands etc. this list helps, thanks to all of you.
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