Cold Caps Users Past and Present, to Save Hair
Comments
-
how did it work for me!?
As much as I hate it, I got a compliment the other day that I look cute in short hair!
With that been said, lots of thining and a huge bold spot on top of my head. It happened like after first tc treatment, and then got bigger. To add to that lots of grey!
I tried the wig, but can't! So I wear a scarve lots of toppik and a touch up brown spray from Sally's. The scarve covers the bold spot, so supposedly it's not noticeable.
I would do it again, I would do PCC instead of artic caps though. I spoke with my RO and he is ok with me using Rogain for men and latisse for lashes during radiation! No viviscal or other supplements.I know will grow back but I want it faster! So will keep you posted! Will be getting latisse today!!
0 -
Ok ladies, another question. My chemo is at 10, so I'll start precooling at 9:10. What time should I put the PCC in the cooler? I called my rep and it says the call can't go through and the directions are getting confusing, which may be because I'm overwhelmed and worn out.
Thanks yet again
0 -
Mari -- I thought the baseball hats w/ hair on headcoverings dot com looked cute. I generally like real hair versus synthetic hair, however, was thinking about ordering one for a quick throw on for errands, they get good reviews -- I like wearing hats anyway -- and they look less of a production for quick errands. They allow you one exchange for color, I asked them.
Today is #2 on TC for Digni - i have some shedding so far -- so we will see, i was looking at the hats/hair -- because I am only washing my hair once a week and have pretty much bed head -- i thought the hats could be used for short periods - errands and i might like it - haven't pulled the trigger yet
0 -
brightness, I'm not using pcc, I'm using chemo cold caps. I was told to put the caps in 3 hours before capping starts. But chemo cold caps recommends that they go in at room temp. I believe pcc has you freeze them first. Good luck today! You got this.
Travel Girl- I am right behind you with my second TC treatment being on sept. 26. I haven't had the big shed yet. When did you start shedding significantly?
0 -
I sent an email since I couldn't get through by phone. She responded right away. I know it's different for each person depending on their treatment regimen and personal traits etc.. For me, I put the caps in the cooler 50 minutes before my premeds start, which is 10 minutes before I start precooling. It doesn't sound like much time, but I suppose since it's dry ice, it will cool really fast.
0 -
I have done 2 infusions of TC with PCC-which claim that the TC protocol is one of the highest success rates--am 27 days out from 1st and 6 days from 2nd and have not lost any hair-other than some breakage on top in a tiny area from freezer burn- cause few caps went on too cold like -42/44 degrees. was more careful 2nd time taking next caps out of ice to have enough time to warm it to the -32 range recommended. hair growing back in-- also about day 20 started with minimal shedding not much more than normal daily shedding that has remained consistent-the other things I did was to press down on the top and temples of the caps with gloved hands when on to keep tight to scalp and used the gelbands to keep nape tight in and they wrapped across the forehead line of the cap- have not lost eyebrows or lashes either- wondering if the gelbands across forehead helped that?
I have no hair now on my legs or underarms-ok by me--
I understand the advice is to keep capping even if hair falling out cause it will help it grow back in faster by adding protection the the follicles
0 -
I am 20 weeks PFC. These pics are with no Toppik on (doesn't really hide the gray so I stopped using it).
0 -
thank you , Elberama, for the picture help0 -
ok, getting the timing right takes some practice---I would start putting the caps in every 15/20 minutes when you check in at reception =one at a time starting them at the bottom=pay attention to the diagram you got about how to pack in the ice.Gel bands go on top of top ice. As soon as your nurse comes to get you to your room find out how long the premeds will take to go in and whether there is a wait to have them circulate till the actual chemo can start--ie-- for me, the 4 premeds went in one at a time from 2-2:15p-there then a wait of 1 hour-60 minutes till the first chemo med could start--so that meant 3:15-so back up 50 minutes from that 3:15 and started first cap on at 2:25--20 minutes for that one---second one on at 2;45 for 20minutes---at 3:05- cap 3 goes on --after 10 minutes of that it will be 3:15--chemo can start and that cap stays on for full 25 minutes and so do subsequent caps right till the end of your 4/5 hours post infusion- dont start that 4/5 hours post countdown until chemo finishes infusing--
take each cap out 5-10 minutes before applying and check temp on inner white body of cap only ,not all over. if too cold knead it with your gloved hands and keep checking temp-is why an infrared so easy to use- reading is instantaneous where the one sent to you by penguin takes 45 seconds,
You will get an ice cream headache for 5-10 minutes from first couple caps--just put up with it- it will ease as your scalp nerves adjust and not be bad to tolerate thru the others
I dressed in layers-long undershirt under loose sweater and thin leggings under loose pants with thin socks- I was not cold-didnt ice hands or feet- hands cold enough from handling caps=lol and have had no neuropathy issues=small potatoes compared to losing my hair anyway--I was never cold- you are busy helping so time flies--
After the first few changes you will get the hang of it and just keep going--how far do you lived from the infusion center? we change caps just as we were going out door and able to just get home in time to change to next one- we took it out in car as we were approaching home,otherwise you have to stop somewhere on way home and change by the car--fun--not!!
Let us know how it goes--hugs- you can do this --I did and was as confused as you at first==it will be worth it!!
0 -
GoKale - you look great! For the gray coverage -- I use the gray root coverage spray -I posed above the blond spray I like. Thanks for sharing. What an inspiration!! you put your pix on the cold cap picture only group -- it would be great for others.
My shedding started like day 19/20 -- it is not significant in my mind, just strays of hair -- which I was expecting per all the literature, so not panicking. My hair is fine anyway. So thin hair is my normal. For some reason I think the PCC caps work the best -- no personal evidence, just all the research I have done.
I started with Digni and it was at my local place and the repunzel project said digna and pcc had the same success rate w/ taxanes (TC falls in that category) - so went with it. I just think the pcc's being colder and the longer cooling time might be the trick. But who really knows!
I just hope I fair as well as you have and if not, I have a plan B in place to get micro extensions or an interlace system - from the lucinda project that I also found on repunzel links. I have no regrets so far. No one that I don't want to tell knows I am going through chemo - that helps a ton!
0 -
gokale, I think you look great and I like the color. My hair is naturally dark reddish brown and my gray roots are very obvious. I have a lot of gray and usually had my roots colored every 3 weeks. When I knew that chemo was inevitable, I got 14 inches cut off my hair and had it lightened so that the roots wouldn't be so different. That was back in early July so it was a good 8 weeks before I started chemo. I hope I have as good of results as you do!
0 -
brightness,
According to their website, PCC has a different, patented gel inside their caps, so they cool faster and to a lower temp than the caps that you need to wet your hair with. The cap will be at the right temp in just 50 minutes since dry ice is so cold (I cool mine for 50 minutes, take them out 5 min before change time, and it is always too cold. My hubby lets it warm up for a few minutea to get it to my temp, which is minus 26' to -28' C). Just make sure to have the white side of the cap touching the ice at the bottom of the cooler. Follow your specific directions for when to add the next cap to the cooler, and make sure blue sides are together and the white side directly touches the ice bag. The blue outer side is insulated, so you can touch it without gloves, but it does not cool as fast if that side is the one directly contacting the ice (my hubby put a cap in the wrong way last time, so we know from experience).
Put your first cap into the cooler 50 minutes before your appointment. That way you are ready to start capping right after you are settled in the room. You can cap longer than 50 minutes before your chemo is started, but you want it to be at least 50 minutes of pre-cooling the scalp (I'd rather err on the generous side and cool a little longer 😉). My premeds only take about 35minutes, so even with starting my 50 minutes of precooling as soon as i get there, we are still waiting on finishing the prexooling time before we can start the chemo. The nurses have all been great about that, but its nice not to have a long delay.
I know it sounds like a lot, but you can do this! We were very surprised how easily it became a smooth routine!
Willow
0 -
Gokale, your hair looks good, not at all like I'd expect of someone who'd been through chemo, and your pretty eyes are what I noticed first about you anyway.
Kaylie, I'm going to put all 4 caps and the gel bands in at 8:10 since that's what the rep suggested. I hope it works. I'm still a bit confused about how much dry ice to get and how to bag the pellets but I'll re-read my material before I pick it up, then cross my fingers
We'll have to time it right to put another cap on after treatment, then head home, which should put us close to the 25 minutes. I think it will be close, but ok.
I am worried about the cold head headache, but I've been through so much lately that it's just one more thing and I'll get through it. I keep reminding myself this may or may not work, but as of tomorrow, I'm trusting my helpers so I can focus on my health. Worst case scenario, I've got a few hats to wear until I figure out wigs. I really hope it doesn't come to that, but I'm trying to be realistic while also optimistic.
0 -
go kale, your hair looks awesome! I'd be very happy if my results are as good!
Willow
0 -
hi gang........I'm done, I'm done, I'm done!!! After 6 rounds of TCHP it's finally over!!! I am done with my PCCs and will be returning them in the morning. My husband and I purchased an infrared thermometer we used instead of the meat thermometer included in the kit. It worked great and was much easier to measure the temps of the caps. I would love to donate to someone to save them the trouble of ordering one. For someone just beginning cold caps or in the throws and using the meat thermometer let me know if you're interested. Just want to pass on some love and a handy tool for success. Either message me here or send a PM. I can get that sucker in the mail tomorrow
0 -
Congratulations Mandeola!!! So thrilled you are DONE!!!!
0 -
GoKale - Your hair looks terrific. I remember the pictures you posted before when your hair was extremely thin. Now your hair looks nice and very full. You don't even have any chemo hair, just healthy looking hair. Thanks for posting the pics
0 -
go kale, your hair looks so good.
Congrats mandeola. Yay.
0 -
Mandoela - CONGRATS -- I am so excited for you and thanks for paying if forward and giving away the tool that helped you.
Willow how is your capping going after Treatment #3? Only one more to go right? I am wishing you as great as success as Kale & Manoela.
0 -
Mandeola, that's great news!
I start my 12 weeks today. I'm so terrified, not just about losing my hair, but more about putting this stuff into my body. I was right at the brink of needing it or not. What if I don't even really need it? It was just too big a risk to not do it though.
I'm so afraid
0 -
hey girl -what helped me tremendously is to use some visual imagery as I saw the infusion dripping in and seeing it seeking out and killing any stray bad cells that may be floating around waiting to land somewhere--The chemo is our friend, not our enemy--and is trying to save us so we can go on after this bump in our life' s road and remain healthy. I was afraid of side effects and mine were so minimal both times so far -I only had a couple days of achiness,mild sore throat and some mild constipation--so surprised-remember to take your claritin- I did twice a day for a week after the neulasta- tylenol regularly also,also push fluids for a few dasy especailly today and tomorrow as chemo excreted thru kidneys and liver
Your doc is the expert and he advises this--listen!
Am around all day and thruthe weekend- write whenever-I promise- you can do this and do it well--hugs,Kaylie-{Candace}
0 -
Brightness: It depends on the temperature you need. For me, the caps needed to get to -33 degrees Celsius, and PCC said it takes 50 minutes for the caps to get to that temp with dry ice. I confirm through my weeks of using PCC that this is indeed the right timing for that temp. I needed to start capping 50 minutes before the chemo infusion. My appointments were at 10:00. My premeds went first, then chemo would start around 10:30. That meant I needed to have my first cap on by 9:45, which meant the cap needed to hit the dry ice by 8:55.
0 -
it's ok Brightness - you got this! I am in medicine myself and was still petrified. For me days 3-5 post chemo were the worst. Remember MOST importantly to use your meds to help with the side effects. Zofran for nausea, Claritin to counter act the histamine cascade with Neulasta and Imodium to help with the diarrhea. Try to stay hydrated which can be a challenge on those bad days. If you can't get enough fluids in never be afraid to call your team and go in for fluid repletion. A banana bag does wonders! Stayed hydrated makes a big difference for not only keeping your hair but your nausea as well. Being dehydrated can actually exacerbate your nausea. Little sips all day long as you remember and are able. Trust the process and the community here who has endured it before you. You can do it, we are all here for you!!
0 -
Here I am after final chemo. I had short fine blonde hair to start and have (less) but who cares still fine blond hair. Excuse the permanent bed head in the back. I'm so happy to have kept as much as I have. Hoping the weeks and months to come will continue the same path
0 -
Brightness, 12 weeks of Taxol is an easy regimes with minimum side effects. Remember to ice your fingers and toes to prevent neurapothy and protect your nails. You should keep them iced 15 mins before, during the infusion and 15 mins after. Good luck!
0 -
Mandeola -- fantastic!!!! I have shorter kinda fine blonde hair and i know I will have less - I hope I fair as well as you did - super cute and -- you did well! As my MO said, you will notice the difference, others will never know you are going through chemo -- thanks for sharing. yes, you are making me happy this eve
0 -
Mandeola, wow, cold capping really worked well for you.
Ykh, icing fingers and toes was in the back of my mind, but I couldn't even think about it today.
I had a panic attack, so the nurse gave me Ativan right away. The timing of the start of chemo was a little mixed up so I think I only had 40 minutes of precooling instead of 50. The caps were cold, but not at all unmanageable, which worried me a bit since I was expecting extreme pain. They measured the right temp though and felt tight, so we'll see.
I made it through the first one. Now I'll start to mentally prepare for my second treatment. I have a headache, but it's tolerable. Otherwise I'm feeling ok, just tired.
Thank you everyone for talking methrough the day.
0 -
Mandeola, may I ask if you had a mastectomy of the left breast back in 2014, how did you end up with IDC on the same side/breast?
I had DCIS and IDC in my right breast and had mastectomy last year, and always scared of recurrence. I'm triple positive, had the TCHP regimen, followed by a whole year of Herceptin,and have been on Arimidex since last Aug. Thx.
0 -
Great results, Mandeola!
0 -
Yea==good for you- you are on your way! sounds like you did fine- you will not be so anxious the next time-remember to push fluids today and tomorrow-important
I am not familiar with your protocol--how many taxol treatments to you have to have?
does the herceptin continue beyond the taxol treament-? I read the herceptin does not cause hair loss but can slow regrowth of what comes out from the Taxol. Are you having the neulasta to boost your blood cell production back up?
you may well feel fine today--usually any side effects start a couple /few days--remember you can and are doing this- be proud of your self,C
0
