Cold Caps Users Past and Present, to Save Hair
Comments
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tmb & susieq - thanks so much for the support. the kind words of everyone here are definitely pick-me-ups!
hortense - thank you for correcting my lingo! all this time i thought PFC meant past first chemo. who knows how many others i've been screwing up. i'm T/Cx4. do you happen to remember what your shedding was like after rounds three and four? i'm wondering because if it's as heavy as it's been i probably won't make it to round four.
amyq - great to hear your latest capscapades went well. wishing you smooth sailing from here on out.
fab1 - whoooo hoooooooooo! way to go. glad you got that first one out of the way and here's hoping your se's are minimal.
wbk79 - congratulations on getting your round 1 out of the way too. keep up that positive thinking!
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Amyq what great news, I am SO happy for you!!!
Fab1 and wbk, congrats on tackling your first chemo,, next time you will know what to expect and it wont be so traumatic. we ALL cry, you are not unusual, no worries there.
Kay you are in the biggest shed period. I freaked after my second round as well, the shedding was so heavy. Fortunately when I started chemo and got to that stage there were some amazing girls on this board who let me know that was thier heaviest shedding period too, and that it lightened up after that. It was true for me as well, and I sure hope for you too!
I love the term "capscapades" - that one is a keeper.
we had "penguin parties" with my girls (and one fab gay guy) who came to do my caps- one of the girls made penguin cake pops, we had ice cream in our dry ice coolers, and we had a magazine with a wonderful picture of Brad Pitt at the foot of my bed for some eye candy for all of us.
The way I looked at it- it was not a sad event, we were celebrating kicking cancers butt! And I came out a NED- with hair - so the celebrations seemed to work. LOL.
Amyq- you did it too- hooray!!!!!
Hugs to all, hang in there girls.0 -
Kaydee - the lingo is confusing, I agree. It took me a while to learn it through several trips to the Information and Resource page's Discussion Board Abbreviation Key thread as I was lost in the beginning. I still check back there when I run across something I don't know.
Everyone's worst shedding happens roughly between sessions #2 and #3, so at about the 20th to 35th days. It slows down considerably after that. I think you may be at your peak shedding time, but you should be past it very soon. Have faith! And, take good care of yourself.
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AmyQ, congratulations on the wonderful scan results! That must be such a relief. Wishing you minimal side effects from this last chemo.
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thank you sciencegal and hortense for the timeline guidence. fingers crossed!
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Hi all,
Had my week before chemo visit with my oncologist and she was AMAZED at how much hair I had. A couple of weeks ago, I asked her for a letter to give to my insurance company explaining what the caps do and why they are necessary (still waiting to hear back from them) but while she was writing it she did a little research of her own to learn more about them. She said she thought it looked like a 50/50 shot but that if I proved to be successful she might become a convert
. Fingers crossed.I have to say that I really hate and dread those appointments. I usually have to spend a little time in the waiting room whereas with chemo I pretty much go right back to a private room. By this point in the cycle I'm usually feeling pretty good and these visits just remind me that I'm sick. It's an "Oh yeah, I have cancer" head's up that I don't really need, and while my heart goes out to the other patients I just dread that reminder. Hope that doesn't sound cold but I'm just being honest. Anyway, happy holiday to all!
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I was in for my Neulasta shot today and saw all the bald women getting their chemo...I felt so terribly sad for them as they look like cancer patients. I am sorry if I offend anyon on this board because they were unable to save their hair or decided not to try, but for me I just didn't want to show the world I am a cancer patient. I am very open about dicussing this with family and friends but to go shopping and everyone knows was not for me.
Anyway I just want you to know there is light at the end of the tunnel and all the hassle involved with the cold caps, sitting in a private room getting your chemo, changing them, making sure they're at the right temp etc...is worth it. I am done, hopefully forever and I still have my hair. The funny thing is I lost hair on my legs, chin and underarms but kept everything else...no complaints whatsoever! Good luck to you.
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Hi ladies,
My mom has had so much shedding the last 3 days. Today makes day 22 - when does it begin to subside?
My mom had to postpone chemo #2 for an extra week out - so next Wednesday. Do you think her shedding will slow before? I'm afraid she has lost so much that it won't last 4 rounds or it will just be SO thin. She lost a bunch above her ears and at her part....
Do you think there is hope?0 -
Chelsea - Your Mom is at the spot where almost everyone sheds the most which is between #2 and # 3. True shedding starts around the 18th day after the first chemo treatment. It seems worse when it's happening than it actually is. Also, the fact that she can't wash her hair as thoroughly as she normally would means that her hair is not as clean as usual, so also looks thinner as it's stuck together a bit by the oils that remain.
It sounds as if the caps may not be covering your Mom's hair completely if she's losing hair in spots above her ears. I have a large head and used extra gelbands snugged up against the caps to cover any hair that did not fit under the caps. You might consider getting some from Geralyn in time for her next treatment.
While I did not lose hair in any areas over my ears, I did lose hair universally from all over my head, and my part did look wider. I remember having a disturbingly big fluffy handful of it left over after several showers around treatment # 3 and wondered if I would keep my hair, but the shedding did slow down and I did keep my hair. Your Mom will too.
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Good tips as always Hortense!
Chelsea many of us lose hair behind the ears because when the caps are put on they push the ears flat and that insulates the hair under them. I lost in front of my ears too because my head is so big and bulbous that even with the gel bands there was not enough coverage there.
But 4 months later that hair is now an inch and a half long, it came back fast.
Also the part does get wider due to the loss of all the old hairs. I sprinkled on the toppik fibers in my blonde shade from Sally Beauty and no one could tell.
I was in Rite-aid picking up some meds today and saw that they have a similar product near the men's rogaine.
GOOD luck to your mom, and to everyone on this board!0 -
ChelseaAshley, make sure your mom changes her part for each cap change, or pulls the top hair straight back. That way there will be less chance of frost nip in the part area, which might cause hair loss there.
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Thanks AmyQ! If I can't vent and be honest here, then where else can I go? And it is not just the women without hair- there are both men and women who just look so frail and ill. It's hard to see and even harder to imagine yourself like that.
I also lost the hair at my temples in front of my ears. No big deal- I know it will grow back. I tell myself it is a small sacrifice if you keep most of the rest.
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Although we all worked so hard, or are working so hard, to keep our hair, I feel immensely guilty when I go in for my herceptin and the other girls are bald. I just wish EVERYONE was given this option and it was affordable for all. and easier- if there were those freezers or the cap machines in at least one major infusion center per region, to which the patients who choose this should go.
Maybe in the future, if more patients demand it??
In my lab the other day I was talking to a group of visitng older women about tissue reconstruction,and mentioned the use of fat grafting to help with breast reconstruction. One of the poor ladies burst into tears and said she had double mastectomy many years ago, these options were not available back then. She misses her breasts and has lived with breast forms for over 20 years.Boy did I feel guilty then too, with my newly constructed "foob". I cant mention my cancer at work of course. I told her she might be able to get construction even now, through a flap graft, and she was so interested.
Why is this information not out there as well???
Anyway, I am just saying I am glad we are being treated in this era of modern medicine. I feel like we are kind of the pioneers in this cold capping, it hasn't been aorund for much more than a decade, and just now getting to be better known.
I hope everyone who has success will help spread the word.
Happy 4th ladies and here's to our independence from cancer!!0 -
Lots of reading to catch up. I decided to use my small SE-free window after chemo to go to my mother's place, 40 minutes away. The muscle pain from the paclitaxel started, followed by extreme fatigue, and I ended up staying a week. It was very nice to have my mother look after me though!
Curly, I'm sorry you are going through the concerns about thinning hair. I agree, that when you're done, your hair will "fluff" up more than you think - especially since you're curly haired.
I too am praying I have enough hair left to make it through. My shedding was very little by the time I was ready for my 2nd paclitaxel infusion. It increased again a few days post-infusion. Now, it seems to be easing off again. I am praying this trend will continue for my last 2 infusions.
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I did a dry run with dry ice today. I transferred from the freezer to dry ice at 7 am since my friends were coming over at 10 am. We practiced first with caps out of the freezer, and didn't use the dry ice until 12. One cap was not cold enough in all places. There were parts that were -21 and parts at -35. The other cap was more uniform. I had 30 lbs of ice over, under and around the boxes. Also it was really only uncomfortable at the top of my head and we worked really hard to get it snug all around. I just don't know if we have it right or what I should even do in that situation. I only had 2 caps iced so I couldn't try others, but I would have thought 5 hours on 30 lbs of ice would have done it.
We decided we are bringing chocolate for the chemo nurses and pharmacist to try to build some goodwill. I did herceptin only 3 weeks ago and it took 2 hours for my meds to arrive, and the chemo nurse said they couldn't wait an hour after the meds come up to start. So basically I need to start icing and hope that my meds arrive within an hour. So I am going to make a stop on my way in at the pharmacy and tell them my situation and hope that it doesn't take so long to get my meds this time.
My first chemo is Wednesday.
Marsha
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Hi Marsha-That is admirable that you did a dry run! Chilly dry run!
Kudos.
The caps always felt coldest on top of my head too, I think the weight presses there the most. Remember you will be kneading them as much as possible to make sure it is a good fit and that the gel is in good contact with each part of your scalp.
You guys will rock it- you are much better prepared than we were, and I kept my hair!
GOOD LUCK!!!!!0 -
Hi sciencegal,
I'm in the SF Bay Area and looking for anyone that had old supplies they would be willing to donate for starting cold caps. Is there anyone that could suggest a place to contact people that would be willing to swap or sell their coolers, gloves, thermometer?0 -
Hi sweetdaze and welcome! One of our faculty members is currently using mine (still for five treatments, she just started) or I would offer to drive them up to you.
Maybe someone else can offer to donate items??? There are many wonderful women on this blog.
If no one comes forward maybe you could start a "caring bridge" to get donations to help you save your hair? many people want to send flowers, etc and this is a more practical way to help you....0 -
Hi sweetdaze
Wish you didn't have to join this club but welcome nonetheless. I live in the Bay Area but recently donated my supplies to a woman who started a few weeks ago. Where are you having your treatment? If you can get a biomedical freezer donated by the Rapunzel Project it would cut down on cooler and dry ice costs. I wish there was a better way to share supplies and pass them along to people who need them. I do think in hindsight I could have spent less. I bought the starter kit but didn't use all the supplies. I think some people had good luck getting the thermometer on eBay for a good price. That is normally an expensive piece of equipment. I got my coolers on Amazon and you can get gloves and moleskin at Target.0 -
Hi girls
A quick question while using cold caps is it best to fore go hair washing, or is it necessity as part of cap use? If so how often. As i have very thick curly hair which will get vutlier ad thicker each i wash mh hair. I'm afriad that caps will not work so well. Any views .
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Hi Ladies. well I made it through round 7 this week and still no shedding , thank God. my hospital is doing a clinincal study on cold caps. both Penguin and one that is amachine looks like the pacman model but its called digi something. In any case they said the reason i have all my hair is becuase my chemo buddy is doing her job with the caps. Putting them on tightly and really tucking in the flaps in that back well. Another woman who goes on same day as me has had some huge shedding. I could tell her husband was not putting her caps on snug enough in the back so my chemo buddy showed him how to do it right. Its really important to massage the caps for a fe min right when they come out of the freezer and soften up the white parts or they wont be snug on your head. Make sure the person putting on your caps does all that and watches the You tube video and do it the same as they do.
http://www.youtube.com/watch?v=sRIla4pQB_c .... oh andI also use the moleskin over my ears and forehead which they don't show in the video and i take an oxicodone pill 1 hr before the caps go on. Once i get through my lat 11 treatmentments i just have to decide on masectomy or lumpectomy with rads. Radiation scares the crap out of me. hang in there!0 -
Marsha, my helpers sometimes struggled to get the caps cold enough, particularly when using them the second time that day. That's why it's important to test the temperature about 10 minutes before each cap change. If not cold enough, my helpers would take the cap out of the box and lay it on the ice for a few minutes. Although PPC would not recommend this, it worked for us with no damage to the caps. The dry ice was in storage bags so the caps were not in direct contact with the ice. Also, it's very difficult to get the caps uniformly cold. As Geralyn and others on this board suggested to me, if the temperature in the middle of the cap was cold enough, we used the cap regardless of the temperature in other areas. Five hours on dry ice should be long enough before using them.
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fab1, you're not supposed to wash your hair for three days before and three days after each treatment. The rest of the time you can wash your hair every 5 days or so. I ended up washing my hair every Sunday during chemo because, surprisingly, it didn't get very greasy looking between washings. I also got very nervous at hair wash time so I tried to keep hair washing to a minimum.
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Leslie rads are different for everyone. After 4 rounds of TC I did 33 rad treatments. About 2 weeks in between chemo and rads. I used aloe force lotion and had some minimal pinking. The worst for me was being tired but I went back to work 3 days after final chemo and ended up with pneumonia.
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I will be starting TC this Thursday and cold caps are due to arrive Tuesday. I've been busy assembling all the supplies. My question is about how you manage to keep changing the cold caps after treatment? I will be doing dry ice method and have a volunteer to help me at the treatment center for the 4 hours I'll be there. But then I really can't ask her to go home with me as I live probably 45 mins + away and she is doing so much. How do you recommend managing the 3 hrs after? Also, they are only sending 8 caps so that's only enough for the 4 hr treatment time, right? I'm confused. Thanks!
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PortlandLady - You should have instructions for how to load the coolers so they refreeze. Did you get an email with instructions from your rep? If not I can PM you the very detailed instructions that Geralyn sent to me.
I was shy about asking for help but then I realized that my good friend who agreed to help was feeling overwhelmed, so I emailed all the women on my caringbridge and I was impressed with the response I received. I also saw someone on this thread who said she did it herself, so I guess it can be done.
I hope that someone is driving you home.
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HI Marsha,
Thanks for the info - I've been so busy getting supplies for cc and chemo and home and pets, etc that I haven't read the instructions thoroughly yet. I didn't realize that you can refreeze them in the dry ice, so thanks.
I haven't arranged for a ride home - my MO said I wouldn't need one. Do I need to re-think that? It will be during rush hour and will take a good hour to get to my house. Most helpers don't live near me. It's so hard doing this alone...but I don't have a big group to lean on.0 -
PortlandLady, can you stay at your facility for the post-treatment capping? I was lucky to have a freezer and a dedicated room at my facility, so I made my appointments for 8:30 each week and we were basically there all day. I had two main helpers - friends who are retired and thus were available all day. I had a couple of other friends who filled in when the main helpers weren't available. People really want to do something, so don't be shy about asking for help! I read on this thread about the one woman who changed her own caps, but I can't imagine being able to get the caps on and tight on my own.
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Portlandlady, if your MO says you will be OK to drive I would go with that. You won't feel any effects of chemo right away but I recall getting Benadryl and Ativan with my chemo which makes you sleepy.
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Portlandlady, wish I could be there to help you. I think the suggestion of staying at the treatment center, if you can, is a great one. Not only would it let your helper be able to stay and assist you, but also it would let you get any benadryl effects out of your system better before driving home.
How did you find your volunteer? You may be able to find another volunteer who lives near you if call the American Cancer Society or Susan G. Komen foundation. There are so many resources out there for cancer patients - take advantage of them - that is what they are there for!
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