Cold Caps Users Past and Present, to Save Hair
Comments
-
Kelly - such a beautiful post.
As everyone above, I am sorry both that the caps didn't work for you, and that you have had such an uphill struggle. BC is a beast :-(
Thank you for sharing - your honesty is amazing and made me reflect that we all have our worst moments with this thing. Then we prevail.
Big hug. You are beautiful with or without hair. Just like we are beautiful with or without breasts.
0 -
Kelly, thank you for sharing your story...from the beginning till now. We learn from one another and your story will help countless of other women on here.
Im so sorry the caps didn't work out in the end...but that you are at peace with what happened. As someone else said this BC is a bitch!!! It has taken so much from me this year....but we are here to fight and to perservere....which you are doing so beautifully!
Ps- I stress every day with every hair comb...with every hair shed... Forget about the hair washing! Oy!
0 -
Kelly,
Thank you so much for sharing your story. As painful as it is to read, it is so helpful to newbies going on AC to know that it is a tougher regimen with a lower rate of success with cold caps compared to other regimens. Having realistic expectations during this process is so important.
I suspect your hair will grow back faster than if you had not done the cold caps. I want to think all your efforts will pay off for you in some way! I know this has been so hard on you, and I am sorry for that.
In this breast cancer "journey" we lose so much that identifies us as women, that makes us feel beautiful according to societal expectations. Our breasts, our hair, and for some estrogen - leading to early menopause and possible sexual dysfunction. So many losses to adjust to. This song for me represents that we are so much more than all those things that we think should make us feel beautiful as women. But our souls are what make us beautiful, and we don't have to try for that to shine through.
0 -
my first infusion 7/17/2014 -icing everything!!!
0 -
This is after 3 TCH infusion and 1 weekly taxol....I have 2 more treatments..
I have to wear my hair differently (i.e, no styling) but I know that no one that I haven't told about my BC would know I am almost done with Chemo. I did however go and buy eyebrow stencils after taking this pic....I'm not doing such a great job matching them...they haven't faired as well as my hair!
0 -
Jennliza - you look amazing!!!! Love it!!!
0 -
Jennliza you look so cute in your cold cap attire!
And your hair looks fab! 0 -
You look wonderful!
0 -
Looking great jennliza! (even with your cap on!)
0 -
jennliza- you and your hair both look great!
0 -
I love seeing all the cap pictures, and I can only hope that someday when it's all automated and mainstream people will look back on our pictures in awe at how much we had to go through --- we are pioneers, ladies! No matter what your level of success, we all worked so hard to give it our best shot to maintain our privacy and dignity through a rough situation. Hope all goes well for our cappers this week!
0 -
ladies-
When so you think I can safely color? I swear I'll find the most chemical-free/healthy product I can, but I have several inches of horrible growout, and I'm very sad to say that it's more than 50% gray
I'm only 37 and what hair still has pigment is black. Lol. I look like a skunk. Or cruella deville. I don't leave the house without a hat, i look pretty wretched. I'm 6 weeks PFC.
Suggestions on coloring products appreciated too!
Also, I washed my hair yesterday and added some head and shoulders to my baby shampoo, my dry scalp is super gross. Can I start using nioxin yet?
0 -
Wyomama, it's kind of early to color. Having said that, I know it's really hard to wait and I don't recall anyone having issues with addtional hair loss after coloring no matter the time line. I'd be more concerned about using heat to apply the color rather than the color itself as long as you use something gentle. I first colored at twelve weeks but we applied the color without heat. It covered pretty well considering. You can kind of tell when you hair seems to have settled down- are you still shedding?
0 -
Wyomama - did you try the Rita Hazan or Style Edit spray? You can spray right down the part and cover a good amount for now. I bought some powder root concealer at Harmons today. It made my hair look really matte in a weird way but it covered the grey. My friend brought over something like Toppiks hair fibers called Illusions in a dark brunette color. It's to build volume but it also worked well in covering a lot of my grey. I'm already Cruella Deville and I have 8 infusions to go! I feel your pain.
0 -
I used Clairol beautiful collection and it does not use heat. It did not cover all of the gray but it toned it down enough to make me feel so much better. I used that for a while then switched to Naturtint. I still use Naturtint and it also does not use heat.0 -
Wyoma you can certainly use Nioxin at this point. It will get your scalp and hair really clean. Just read the labels and pick the number that works for you. I got #4 for Chemically treated naturally thinning hair as I thought that matched me, and I used both shampoo and conditioner.
Wet your hair and work it in gently using your fingers gingerly along your scalp, then let it sit for about five minutes to do its work loosening leftover dirt and oils as you shower the rest of yourself. I think you can use your fingers to gently run along your scalp at this point, to help the shampoo wash off the buildup, rinse under gently flowing water - turn the shower very low or use a hand held shower spray on very gentle to thoroughly rinse, but still use cool water. I used the creme rise on my hair and rinsed it out carefully. I could not believe the difference that first shampoo made. My scalp tingled from the mint in the shampoo, but it felt good. Another wash three days later got rid of the balance of the residue from months of not being able to wash normally, and I felt like a new woman with a lot more hair because it was no longer laden down with unseen buildup.
0 -
Well, it would really suck to do all this work to screw it up at the end!
I have tried powders, no go. I have so much grow out, it just doesn't work. I'll look into the spray.
I am SO excited to wash with something other than baby shampoo!
I'll look into naturetint too. Thanks ladies
0 -
Hi cold capping friends! question: Day 36 for me (appox 5 weeks) since first infusion. IS it possible to experience new hair growth? It may be a mirage, wishful thinking or pure delusion on my part but today I noticed maybe 1 inch what I think are "new" hairs at nape of neck. Unless my hair shed/broke this way I'm thinking it may be new? honest feedback appreciated, I can take it if its not new growth, just wondering if this is possible. Thanks all you veterans for replying
0 -
Hi ladies,
Here is a local story they did on the CBS affiliate in Denver at The University of Colorado's Cancer Center, where they have a freezer. This story features my MO, Virginia Borges, MD, and she told me two weeks ago many of her patients are using the caps with great results. She said it seems to make a big difference in how women get through the treatment as she states in this news feature. It make a big difference for me. I kept most of my hair, but lost about 35% (no one could tell) and I was so very grateful for that. We drug in our dry ice and caps back then (I had my last chemo around mid April of 2013), the freezers make it a lot easier to use and cheaper because you do not have to pay for the dry ice. I used the Penguin Caps (make sure to order the extra bands and wrap those tightly around the area above the ears and nape of the neck).
Good luck to all of you and do what feels right for you and your family. I pop back in on the board every now and then and love all the great pictures everyone has been sharing.
0 -
Just taking off my last cap. I capped from 2-9 today because of constant interruption of treatment. Trouble with the veins, stick test for wbc twice because firt sample clotted, then wait again for results. I had probably an extra 2 hours of caps. The caps did not feel cold or tight enough all day. And when I took my final cap off, the underneath hairline nape was warm - so obviously the gel band wasn't low enough. So annoyed! With so many treatments, it's that many more times this process can get screwed up!
I have to get a port. I'm dreading it I don't want it my fault for worrying about having to get one. I didn't follow my own advice and in a way wished it on myself. Ugh not happy.
One of my caps actually broke! The gel was oozing out. A few of the other looks like they are going to split apart. Ugh. It was not a good day. 7 more to go.
0 -
Sorry you had a bad day DaniellaD,
There were times that I got very mad at my patient husband/helper as I felt like the caps were not cold enough.
My hair was able to hang in there. I was a baby about getting a port. There was some pain after the procedure and they said it was because I was "thin skinned?" Thought you had to be "thick skinned" to go through this stuff.
Hope tomorrow is a better day...know that we are in your corner.
0 -
sorry to hear about cold capping disasters, Daniella. In previous posts folks had lots of problems here and there that didn't seem to affect things much. I would have been freaking out if I had caps breaking! I'm done with #3 AC chemo, and have almost four more hours to go with my caps for tonight, but so far I've had good results. Today my infusion chair next to the cold cap freezer was directly in the sun with no blinds and I asked the nurses if they do that on purpose since us cold capers add a extra layer of difficulty to their jobs too. Lol. (Timing wise mostly) so forgive this strange squinty pics of me cold capping today!
0 -
jennliza--you look amazing! Hair looks beautiful and you look so healthy considering your extended hospital stay and port problems. Good for you! Hope u r on an upward trajectory😃
0 -
Daniella- that's crazy about the cap breaking!!!! Relax- I am sure the caps were cold enough. There are other caps being used that don't get as cold as PCC and ppl still keep their hair. Also some woman from Europe posted who said over there they only wear the caps like an hr or 2 after chemo.. I am sure you wore yours for like 4 hrs...your hair will be fine!
Gatomal - thanks...I took that on my 3rd day after chemo...so not at my best. Today I feel much better. I definitely lost @10-15% of my hair.....I'm bald above my left ear..but no one can tell unless I wear my hair up.
Unfortunately I am still in a lot of pain from the holes in my chest...and not taking painkillers.. I can't wait till this is over.....
Since my chemo was changed/shortened...the end is in sight on 10/10! Then into my boobs!!! Hoping the holes in my chest don't delay my TE for implants transfer...want to sched for mid-end of nov! I want to go into 2015 with most of this behind me!
0 -
cold capping pic...staring into the sun. I'm usually not so frowny and squinty
0 -
Daniella- Ugh! What a day you had yesterday!!! One frustration after another- I'm sorry about the port, I know how much you didn't want one. Such a good idea to keep capping the xtra hours when you got home. With all moving parts on the chemo/capping day lets believe what the ladies before us say: that crazy crap happens and yet the caps still work. Its a loop de loop roller coaster for sure - lets hold on!
Have faith my friend:) BIG HUGS!
0 -
Jennliza- Your hair looks terrific!!! After all you've been through you really look AMAZING-I hope each day you're one step closer to a full recuperation.
0 -
Fellow Capsters, perhaps, like me, you have grown tired and angered by the media's glorification of baldness at the inevitable result of chemotherapy. The People magazine with Joan Lunden on the cover and her discussion of hair loss was, for me, the last straw. So I'm engaging in a little social activism and wrote the following letter to Robin Roberts and Amy Robards at GMA.
I hope that those of you who feel well enough will write as well. I know there are a lot of us and our voice deserves to be heard by all breast cancer patients, not just those fortunate enough to have stumbled on to the cold caps.
Dear Ms. Robards:
I was in
the chemo waiting room for my Herceptin infusion when I struck up a
conversation with the woman sitting next to me.“What are
you in for?” I asked, acknowledging the prisoner like experience. “Breast cancer,” she answered, “you?” “Same thing,” I answered. Observing my full head of hair, she commented
that I was lucky I didn’t have to have chemo.“I did have
chemo – taxotere and carboplatin. I kept
my hair using the cold caps.”To my
horror, she began quietly crying. “I
wish someone had told me about that. I
had hair to my waist and the baldness has my kids really freaked out.” I couldn’t think what to say.Cold
caps work to protect hair from chemo induced alopecia. You have the platform and the opportunity to
tell hundreds of thousands of breast cancer patients that they may not have to
lose their hair.A diagnosis
of breast cancer brings a host of unpalatable choices, none of which are we
prepared or, really, qualified to make.
My oncologist, Dr. Joyce O’Shaughnessy, is one of the leading
oncologists in the world. She offered me
the option of using cold caps to save my hair.
That choice, together with going through the process, empowered and
energized me at a time when I felt weak and pathetic.There are
women who refuse treatment due to their erroneous belief that baldness is
inevitable. I know because I was one of
them. I was so horrified at the prospect
that I was prepared to have the mastectomy and call it a day, not understanding
at the time the significance of the HER2+ marker on my tumor. I shudder to think how I would feel today now
that I understand my biomarkers had I not undergone chemo.You may say
that the taxotere, carboplatin and Herceptin may have saved my life and I will
tell you that you are wrong: the cold
caps may have saved my life, for without them, I may have never received those
infusions.“It’s only
hair!” Not to me. Keeping my hair meant I got to continue to
lead my normal life between infusions without feeling like a sick person. Keeping your hair should be a choice offered
to every breast cancer patient, but a choice is only a choice if you know you
have the option. Too many women do
not.I implore you to remedy the
information gap during this “Pinktober”.Sincerely,
LadyGrey
0 -
For those of you getting pushback from your oncologist or the chemo nurses on the use of the caps, here is the letter I sent to my MO before my first infusion. My MO LOVED that letter which is how I learned that the MO’s don’t necessarily have control over what happens in the infusion center. I was the second person to use the caps at my center and I got no push back whatsoever. I understand that a patient after me was told by the nurse that she “didn’t have time for caps.” A fellow capster wisely told her helper to put the cap on that second, and it went smoothly after that.
Dear Medical Oncologist:
I am scheduled for my first infusion of _________ on Monday,
___________. I am writing to clarify my
expectations surrounding the use of cold caps so that things go as smoothly as
possible on that day.- I will be using cold caps to preserve my hair
from chemo induced alopecia. I will need
space around the infusion chair for the two large coolers in which the cold
caps are packed in dry ice. - I will have two cold cap helpers with me to
monitor the cap temperature and time the cap changes. The caps are changed every 20 to 30 minutes
so there will be a lot of activity. - The caps require a very specific time
schedule. The first two caps must be on
my head for two twenty minute cycles prior to the first infusion, and changed every 30
minutes thereafter. I don’t want to
disrupt the routine of the infusion nurse, but I do expect them to work with me
to accommodate these timing issues. - The caps will be handled solely by my
helpers. The chemo nurses are not
expected to do anything but accommodate the timing issues and proceed with
their normal routine.
If your infusion center is unable to accommodate these
requirements please let me know at your earliest convenience so that I can
arrange to transfer my care to _______________ or ________________Cancer Center. I have confirmed that ___________________ and _____________Cancer Centers supports the use of the caps.I appreciate your attention to this matter.
Sincerely,
The moral is: don’t
ask permission. Tell them what you are
going to do. If they won’t accommodate you,
go to a center that will. It is the same
chemo wherever you go.I highly recommend putting on the first cap the minute you
arrive in the waiting area. I found that
they took me back almost immediately.
Remember: you can have the cap on
for too short of a time before the first infusion but not for too long of a
time! No harm in having it on an extra
20 minute cycle, or even two. The caps
refreeze very quickly, so no worries about running out if you have the
recommended 8.Maybe the mods could make this a sticky? I’ve gotten numerous requests for this letter
via PM so perhaps it could be useful to many patients.On another note, I cancelled my last hair cut because I have decided to grow my hair out for Locks of Love. I love the symmetry in that -- maybe some of y'all will join me!
0 - I will be using cold caps to preserve my hair
-
LadyGrey - fantastic letters!
0
