Cold Caps Users Past and Present, to Save Hair
Comments
-
Barremom, I did forget that you were in the Paxman trial. That makes a little more sense because I've never seen that happen with Penguin. Is there a Paxman techician who helps? It does seem like the cap wasn't in close contact with the top of your head. Yes, your hair can continue to grow during treatment so hopefully it will start to fill in quickly and you can find a creative way to cover it up in the meantime. I'm sorry this is so stressful....
0 -
Thanks again jc254 for replying... Theres a nurse who runs the study who's been trained by Mr. Paxman himself. I will continue. I will pray the hair the have remaining will stay....It's not the what I hoped for, I guess I'll have to adjust my sails !!
0 -
barremom, that is more loss than typical with T/C using PCC but I know the Paxman is still being refined so that maybe the variable. The good news is that it looks like you have lots of hair all around. I know a couple ladies got toppers that is a tiny wiglet to just keep that area covered while it filled in - it looked really natural. Someone may weigh in with more info or you can google it and you'll find options. Hang in there!
0 -
Thanks Hope- In my panic yesterday, I emailed the general mailbox on the Paxman website, and to my surprise Mr. Paxman himself emailed me back. Although there's not much I can do now, I did appreciate his responding. He thought the cap was indeed too big at the crown. I have had minimal shedding between 2 & 3rd infusion, so it does give me hope that maybe the worst is over. If I hang on to what I have now I would be very happy. I understand wiglets would work well as would a few other items my fellow cappers have suggested (thanks girls!). I'm seeing some re-growth and feel encouraged by that.
I took a chance using the Paxman system and although the results aren't what I had originally had imagined, I do hope my participating in the trail does help others down the line
0 -
barremom - you indeed will help others who try the Paxman system very much! They will learn how to size and fit the caps better! I'm sure Penguin wasn't perfect at first...and it still isn't. We are all pioneers on this cold cap front, making the process easier for all those who follow in our footsteps in the future.
So glad you are already seeing regrowth!
0 -
Have any of you worn knit hats over the cold months to protect your hair or just to hide bad thinning hair days? I washed mine for the first time 4 days after my infusion with Accure shampoo from whole foods and cool water and then used the conditioner very lightly. My hair still looks so dirty especially if it isn't styled. Have any of you used all natural styling creams or anything? I have not had shedding yet but I'm still super early on.
0 -
barremom-Could be the Paxman system isn't cold enough. I know the Digitana system is not either. I contacted the inventor for the Digitana system when I learned that there was a trial in the Los Angeles area. I explained that I had worked with dozens of women helping them to save their hair using the Penguin caps. I believed he might find the data I collected helpful in improving hios product. He returned my call and my suggestion to him was to lower the temperature of use. The lowest temperature for Diginicap use was @ 2°C. This is a lot higher(warmer) than caps used by Penguin and Elastogel. BTW-I find it odd that an inventor would take the time to personally call a regular customer. The inventor for Penguin does the same.
0 -
Holly - I did wear a cute hat at times. It was kind of like a baseball hat but cuter. I just pulled the rest of my hair down into a low ponytail and put the hat on. Some days the hair was just ugly and needed to be covered!0 -
So my last infusion is tomorrow!!! My chemo was shortened and changed to weekly taxol due to the port infection/tissue necrosis. Though tmrw, I am definitely adding back Carbo and am hoping to do Taxotere instead of weekly taxol tmrw since I am healing so well....this way I will have done 4 TCH treatments plus 2 weekly taxol. Meeting with MO today to discuss!
Anyway, I will be done with cold caps and Geralynn said either mail them back to her or if someone else needs them...I can mail them directly to them. So that is why I am posting. If there are any lurkers who are considering using PCC's on here soon....contact me and we can arrange with PCC to change billing. FYI- through the 3 TCH infusions (hard on hair)...I lost maybe 10% of hair.....they worked for me!!!! Hair loss was mostly around my left ear...and well distributed around head so no one could tell.
0 -
Jennliza, oh congrats! I can't believe you have one and done. So happy that this stage is almost finished for you, after all you've been through (he$$) AND you are finishing with hair! Please keep us posted on PFC shedding, as I'm curious about your experience. Are you done with all treatment soon? Let us know how MO appt goes.
0 -
AMAZING results Jennliza, after all you've been through! Glad things have turned around and you're done!!!! So happy for you!!!
0 -
HollyD- You may be referring to my recent hairloss. Please know most of the Penguin cold cappers are VERY successfuI, especially on your chemo regime. I am using a different system entirely, called the Paxman, it's a widely used in the U.K and I'm enrolled in U.S. trial. My results are not typical of Penguin. I wish you the very best of luck capping!!!!
0 -
@Jennliza.....I am so happy to hear your results with the Penguin Caps! I am starting my Taxotere/Cytoxan treatments at the end of the month and was going to give the PCC a try! Did you use dry ice or does your chemo cemter have a cooler? That's my biggest concern, keeping the caps at the right temp. Any advice or tips you have would be greatly appreciated;)
0 -
So I may not be done after all. I know I can be done if I want...but I am considering doing more weekly taxol if my Onc doesn't allow me to do Taxotere tmrw. It's such a a hard decision...no one really knows if you need chemo or not with Stage 1. Perhaps the 3 TCH plus 3 weekly taxols w/carbo for 3rd one is enough chemo....or maybe I need more. Onc doesn't know either...
Anyway, to answer your questions...I wash my hair 1x/week. I also wet my hair (spray bottle) and comb it daily...with a very wide tooth comb.
I use 80lbs of dry ice....I get 6, 10lbs slabs and 20lbs of pellets! Last wk they gave me more....and my caps were super cold!!! If you get enough ice and pack the caps @4 -4 1/2 hrs before you need the 1st one....it will be cold enough! I also wear the caps 4 hours after chemo. It's a really long day....but worth it
Good luck...if you use PCC you should be just fine!!!
0 -
hi ladies,
I'll echo Jennliza - I am now 2 weeks PFC (4xTC) and caps were a huge success for me - I'd also estimate I lost maybe 10% of my hair. Made for long days, and I found the caps quite painful, but SO worth it...I worked straight thru chemo and few people knew I was in treatment. Also I am pretty sure I felt better simply because when I look in the mirror I see myself, not a cancer patient.
Couldn't be happier :-) and sending those caps BACK to PCC was the moment I really felt like chemo was done.
Keep strong cappers!!!
0 -
Yay Raindew! High fiving you right now!! Love hearing more successes. I felt the same way about not looking like a cancer patient...I think it really helped my mental outlook while going through all of this.0 -
So I am not done with chemo
I could stop but decided to do another 3 weekly taxols...this way I will have done 3 Taxotere/Carbo and 6 weekly taxols when done....and will feel better mentally when done.
I got laid off my job on Mon....and yes it was because of my breast cancer and the port complications....though they can't say that (I was out of the office for @5-6 weeks in a 5 month period). So it's not like the additional chemo will affect my job anymore.
I am keeping the caps till the end of the month now....though my hair is growing on Taxol...prob don't need them. But at least I know I won't really lose anymore hair now either.
Oh and I scheduled my TE for Implant surgery...11/25!!! Woo hoo!!! Can't wait for all this to get back to my formerly healthy and happy/somewhat care free life!!!
0 -
Going for my third infusion today with the cold caps. I have one wide part that looks bad around my right side. I hope it will fill in. I can touch a lot of skin. Hopefully this one is going to go well. I fasted 48 hours too. It might help shut down the hair even before the cold caps. It wasn't easy. I'll see if there is any less shedding.
0 -
Good Luck SueBe!!! I admire the fasting, I don't have that kinda willpower! Sounds like you'reedoing everything you possibly can.
Sending good thoughts your way!
0 -
Congrats Raindew!
Barremom could it be that the caps are not in great contact with your scalp in that area? I got two balding spots where the Penguin caps had a seam, there wasnt enough gel to cover well and flush against the scalp.
I dont know your caps, but for penguins we have to knead them against the scalp to keep the contact right against the skin and hair roots.
I was able to cover my thinning spots with toppik and pulling the hair back oh-so-gently with teeny claw clips. It grew back in quickly. I hope that happpens for you!
Good luck cappers!
0 -
Hi Everyone, I've been recently diagnosed and will be having the FEC-T (Fluorouracil, Epirubicin, Cyclophosphamide + Taxotere for the last 3 sessions). I'm going to be trying the cold cap and have been reading through the threads to see if anyone can give me more information about what you can put on your hair during treatment. I've read loads about trying to only wash once a week and using gentle or ph neutral shampoo and no blow drying or straightening. The problem is my hair is very curly and frizzy and if I can't blow dry and straighten it then it needs loads of leave in conditioners and other products to control unruly hair - does anyone know if using these kinds of products will have a negative effect - if so it'd probably easier to give up early and go straight to a wig (which I really don't want to do if it can be avoided) so if anyone has got any experience or knowledge about this I'd be really grateful.
Thanks L
0 -
I'm using penguin caps and we use a rolling pin to smoosh the gel flat and closer to the seams. My husband who is my cold capping buddy, uses a lot of force to get the caps super tight and we readjust as necessary. Sometimes we have to take it off and start over if it's just not sitting right and I have a big gap in the back or something. We also have the headbands to go around the back of the neck and the hairline in front and use two of the Velcro straps. I change my part every change with my fingers going from left side to right side, working my way into center and back out, and haven't had a frostbite problem yet. We also cold cap a full 4.5 hours after my AC treatment. We have had great success so far, 52 days into chemo with virtually no shedding, although I think my pregnancy may have something to do with that. I am kind of preparing for a possible major shed after delivery, so just enjoying the hair I have, dark roots and all.
0 -
Wow Gatomal you are going through a lot! Your husband sounds great. I hope your hair- and baby- and you- are all okay.
Hugs
0 -
Thanks ScienceGal- Yes, were I having my "thinning" spots is exactly where the cap didn't fit well. In order to save what I have left, This time I used xtra straps to hold it down even tighter. Everyone else in my trial group had the exact same issue so there seems to be a design flaw with the cap. I have the Toppiks ready to go!
0 -
Hi Barremom- I hope the company will learn something from this- and any other users. Thanks for being so brave to share.
The toppik fibers are great. Hey if they work for guys they can work for us, right? I mixed blonde and red to get my hair color.
The rest of your hair is gorgeous! This will grow back in fast.
Good luck!
0 -
JennLiza - I am so sorry you just got laid off. That's awful, honestly. What a horrible, heartless company. Will that affect your insurance? You are dealing with a lot right now. I hope things ease up for you.
0 -
Just checking in ladies. September CT clear and followup in 6 mos. YEAH! Hair is all filled in but still wavy/curly. Shorter than normal but healthy looking. Had a scare with PET and CT spot in my lung in Jan/Feb but it went from 9mm to 4 mm in May and gone now. Onc says it was some infection that he treated with antibiotics. Hope all my chemo peers are doing well. Glad to see the newbies are being successful. Take care all
0 -
SchoolMom - Good going! It's been quite a scare.
I don't check in for a couple of weeks and I miss 4 pages of posts.
Cappers - I am the one who posted horrifying photos of tons of hair loss but I did survive. 6 mos. PFC and not a single hair leaves my head. Not when I brush and not when I wash. I've returned to washing my hair normally and even use hot water. Thank goodness as the temperatures are dropping. My regrowth is several inches long and I wear my hair in a few cute styles. I have a bunch of the Mad-dana hair wraps that keep the new curls from popping out like corkscrews. Bottom line - During chemo and the shedding period I wondered at times if it was worth the hassle but today I am absolutely happy as I am not walking around with short hair as that is not a flattering style for me.
Hang in there cappers and message me if I can be of help. I'm busy preparing for my next surgery.
0 -
I'm guessing you can't highlight or color your hair while going through chemo with the cold caps. What about highlighting before you start chemo? Does that make a difference with the caps? I wouldn't want to do anything that would make my hair brittle or more likely to fall out.
0
