Cold Caps Users Past and Present, to Save Hair
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Have you tried Sears? I think someone on the thread somewhere a long way back got one at Sears.
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I got mine at sears in the automotive dept. Good luck.0 -
Hello Cold Cappers -
I finished my last TC today using the dignicap from Dignata. I was in the clinical trial at Baptist in NC, so mommy if you are in NC you can private message to try and get in trial.
Overall, I am pleased with my results. I had original thin to medium highlighted hair. We estimated today, that I probably lost arlound 35-40% from shedding. I do still have full coverage, with a really thin part on the top of my head. If I comb my hair to the side I can cover it up. However, it's totally worth it, it's better that starting over with no hair. Good luck to everyone still capping. Keep it up....there were times I thought it wasn't working, but I'm glad I braved the storm and stuck it out.
Next ?
Anyone have BRCA 2 mutation and didn't have a bilatertal mastectomy? I'm due to start radiation on Dec. 10th but my MO highly recommends the bilateral vs radiation (I had a lumpectomy in July and found out I was BRCA2+ in mid Aug).
Any feedback is greatly appreciated!0 -
MC! Big congrats on finishing today!!
As for the bilateral, I don't ever want to do this again so I didn't want to leave any breeding ground. It is a really personal choice though!
Best of luck as you navigate through!0 -
mc_in_nc - I'm BRCA2+ and will have bilateral mx after I finish chemo. From what I understand, with the BRCA2, chances of a recurrence can be as high as 40-60%. Like 4sewwhat said, I don't want to leave anything behind. I hope to only face this beast once, so I'm throwing the book at it!0 -
My cousin's wife's family is BRACA2 and riddled with breast cancer, etc. Her 24 year old niece, after watching the terrible effect it has had on her relatives, opted to have a BMX to limit the possibility that she might one day get it. If I carried the gene and had just gone through BC treatment, I would absolutely have a BMX. No question.0 -
Daye - I found mine at Sears. If it weren't so late I'd ship mine to you to borrow.0 -
Got mine from Amazon.com. I am a prime member with them so I get free two day shipping, but I actually placed order around 5PM Thursday and UPS delivered it Friday afternoon.
I'm not sure how pricing compares with Sears but mine was cheaper than I expected after talking briefly with my cold cap rep about all the things I need to get for my first chill-out session.0 -
thanks everyone! I ended up getting my thermometer overnighted from amazon, so all is well! Had my first treatment yesterday. Feeling pretty good so far! Freaking out a little because there was a spot on the back of my head that I noticed didn't have the cap on it for about 15 min and I also had the bands at the nape of my neck (I have a big head...) and they didn't seem to get cold enough! I'm sure I am just freaking out over nothing. Thanks for everyone's support!
Daye0 -
daye.....it will be fine. I had ct chemo and had lots of hair at the end. I shed alot but went back to work 3 days after final chemo.....no wig....no scarf. It was not my normal long thick hair but now 10 mos later it is fuller and no regrets.0 -
Hi Daye,
You have such pretty hair- GOOD LUCK!!! I also have straight blonde hair and was able to keep most of mine, by following all of the advice that these wonderful ladies have on this board.
You might lose some at the nape of the neck and at the temples, just because the caps fit oddly there. but it grows back in pretty quickly and no one ever knew I had lost any.
Do you have the cold cap extra headbands? they help.
Remember to knead the caps while they are on your head to keep good contact.
BEST of LUCK!!!!!
PS lighthouse lady I just saw your avatar- you look great!!
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The extra gel bands work very well. I didn't lose any at the nape or elsewhere.0 -
I do have the extra headbands that I am using at my neck, so hopefully that helps. Just feeling anxious!0 -
You are going to do great! This is the hardest part, the beginning and the waiting! Just treat your hair with a lot of TLC and you got this!!!
Happy Thanksgiving Ladies!0 -
Hang in there Daye! I am sure all went well. Crossing fingers for you. Keep us updated.
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Daye, everyone posting here knows what it's like and we have all experienced nerves and doubts along the way. I am so gratetful to the women who helped me and I stick around now to hopefully help calm nerves and offer support to current cappers. Please don't hesitate to post with questions or when you just need a little positive reinforcement. We are all cheering for you.
It's hard to believe that Thanksgiving is approaching. This time last year I was recently diagosed and still somewhat in shock. The holidays passed by in a blur. Now, one year later, I'm finished active treatment. I'm back to my normal routine. I feel good and thanks to cold caps, I look like my old self. I have a lot to be thankful for. Happy Thanksgiving everyone.
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As I look back a year ago we had a mini Thanksgiving. My second chemo was the Monday before Thanksgiving and I think I made a turkey , dressing and potatoes for Friday. I had serious taste problems all through chemo so it was mainly for my kids. This year we will go all out with all of the trimmings. What a difference a year makes. Happy holidays to everyone and stay safe and warm. (Houston is experiencing a cold snap and we are down in the 30s tonight and tomorrow)0 -
Daye, I finished my 4th TC 10 days ago, and honestly I probably lost about 20% of my hair, if that. Alot of shedding after the 1st session, then not so much the rest of the time. The trick is to really BABY your hair. Use the wide toothed comb, use the organic shampoo, don't put it up or anything . You won't look your best, but you will get through this with your hair!
The other tip I got after my 1st session was to make sure my cappers were kneading the cap every 10 minutes to make sure the coldness was uniform and hitting each area of the scalp. We didn't do that so much the first time, but every time after that we did and I didn't shed so much.
Also, the area around the temples is where it thinned the most. If I were to do it over, I would try and figure out a wrap to make that area tighter. Lastly, be careful of frostbite - seriously, I got a freezer burn on my forehead the first time. After that we placed the moleskin a little more carefully on my forehead and used a microfiber cloth as a barrier so my skin didn't get frozen again.
I am still doing nothing to my hair. Giving it at least a month before I cut it, then will slowly get back to coloring and hilighting again. I don't feel as "put together" as I used to, but I don't feel like a cancer patient either.
Hang in there. Its totally worth it. So happy that you are doing it!
Happy Thanksgiving everyone!0 -
Thanks everyone for all the support. Hearing from y'all definitely makes me feel better. Thanks mfm for the tips. I'm really trying to baby my hair! Hoping this all pays off. I will keep everyone posted
Happy Thanksgiving!!0 -
Mfm. I have my first chemo on 12/5 and will be using cold caps.... Your comment about having helpers knead ever ten minutes. So it helps keep it tight or keep it uniformly cold.... I'm confused.
Also, is there anything I can do to keep headaches away. I am prone to migraines anyway.0 -
Hi Texas, I'm sure mfm will chime in, but I'll share my experience. It's recommended that you knead the caps while they are on your head to make sure the gel inside the caps is distributed evenly. You can do it yourself. However, I don't think it's critical to cold cap success. I did it when I remembered ( which wasn't very often). What I do think is critical, is that the caps are cold enough and that they fit tightly to your head so there are no gaps. Please make sure you practice with your helpers before your first chemo date. Take the caps directly from your freezer and have your helpers practice putting on and changing the caps. They will get much better at it after a few times. The caps won't be as cold or as stiff as they will be when using dry ice, but they'll get the general idea. If the caps don't reach the bottom of your hairline in the back, order the gel bands so you will have better coverage. I used the bands and did not lose any hair at my neck line.
I took two aleve and .5mg of ativan before each infusion. I did not develop headaches from using cold caps, but I am not prone to migraines. Good luck
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is dry shampoo ok to use or is it hard on the hair? I am also needing to figure our best hair products to baby my hair and not feel like a mess between washes. Recommendations and reviews appreciated.0 -
This is my 1st time posting...
I had my first treatment on Nov. 18th using the PCC. So far all is fine but I noticed that I have some dryness on my scalp. Has anyone ever had this and if so what did you do to remedy it? Thanks so much for all of your help.0 -
I used Burts Bees products and Organix products on my hair. Others can chime in with what they used. I did not have the scalp dryness/flaking but I know others on here did. I hope someone posts details on what they did for this. I know they used some apple cider vinegar on their scalp and for some it helped. I just don't remember how they did it. Don't worry...lots of gals here had the dry scalp. I don't know about the dry shampoo - I don't think anyone here has really tried that.
As far as the gross hair....it gets better in time. At first my hair got really greasy...then in time that didn't happen so much. I am almost three years now since my dx and I still only have to wash my hair twice a week. It never gets greasy anymore. It will take a few weeks, but you will notice it looking less greasy. Almost everyone here has said that. Hang in there....you can do this!!!
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Hi Cold Cappers!
It's been a while since I checked in here and thought I'd post an update on this forum even though I've gone on to surgery since chemo ended Sept 12 and will start radiation in Jan. I hope you all had as good a Thanksgiving as possible. I had my port (which was in my arm) removed the day before so had the day to recuperate. Was not up to cooking but some wonderful people here in Portland donated Thanksgiving dinner to cancer/chemo patients and I was one of the lucky recipients. And it was no ordinary Safeway caliber meal - although that would have been fine. It was from the Multnomah Athletic Club, a prestigious local private club and was gourmet quality and enough for 10 people!. I've been eating for days and it's really delicious! The woman who delivered it, with her husband and daughter, had been a recipient the year before as she was going through all this. I offered to do the same next year. Anyone in your area helping chemo/cancer patients at the holidays? Would be a wonderful thing to start. I'm alone ( my husband died from cancer almost 11 years ago) and the holidays are always rough as we had no children. This expression of kindness brought tears to my eyes.
I had surgery 10/16 and spent the night in the hospital which was a good thing. It took me a long time to recover from the anesthesia and they didn't release me until 5pm the next day. As I've mostly had to care for myself through chemo it was so nice to have people taking care of me! My brother flew in from Las Vegas and stayed with me the first 4 days and was a prince as he had to help with drains, meds, dressing me, etc. He had to leave a bit sooner than I would have wished but he was here when I really needed him and it was wonderful. Yes, I need more of a support system - I've been too independent and alone and need to change that in 2014!!!
Hair is doing fine. I lost most above my ears and it is growing back white and is about an inch or so long now. But the rest of hair looks pretty normal. I'm blond and have been using Naturtint to touch up the gray. So far, so good. Penguin Cold Caps were well worth it! If I'd been bald I don't think I could have pretended to be normal with my business clients as well as I did. I bought 3 wigs just in case but haven't even tried them on. Will donate them soon. Have a trim scheduled for this Wed and I'm hoping to do more than a few snips as I signed up for Match and am determined to end this isolation! So I want to fast forward into looking better. Any advice?
So many of you were so supportive when I started down this road last July as I was terrified and am eternally grateful! I thought it was impossible given the demands in my life and that I'm alone. But I've gotten through the hardest parts, kept my hair and am working on a new attitude that will make going through all this worthwhile. So for those of you, just starting: You can do it! If I can, you can. I'm a big wus, needle phobic and impatient with by-the-book doctors. My life isn't normal and I insisted on finding oncologists who "get it". So far, I've had the best. Radiation will be an inconvenience but that too, shall pass. Then hopefully, good times to come. I wish that for each and every one of you!!0 -
PortlandLady, it sounds like you are doing great. I hope you sail through radiation as I did, with just a bit of pinkness and itching. Your Thanksgiving dinner delivery sounds awesome - what a great idea! I haven't heard of such a thing around here, which isn't to say that it doesn't exist. Good luck with Match!0 -
Thanks, PatinMN, not sure about great, but doing much better than I ever expected - and getting better every day. So grateful!!
I hope you are right about sailing through radiation. We have an organization here called Breast Friends - survivors helping those going through this process. It's a fantastic resource and one of the members has offered to give me a lot of the products that helped her in radiation. BTW she is the only other cold capper I've met here in Portland and she did great with them!
Thanks for the good wishes with Match. I've joined before and mostly lurked as I found the men unappealing. But so is being alone, so this may take more courage for me than chemo did!!
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7.5 weeks out PFC. I was very happy with cold caps until about second week PFC, and then I began to lose a lot of hair. it makes sense that the cumulative impact of the treatment would have an effect on hair loss. nevertheless, it has been difficult as i have small but discernible bald spots. the top of my head is very thin; the crown is very thin; the top/back is very thin. i continue to lose hair. i am waiting for the transition-- from watching my hair fall out to watching it grow in. it must be coming soon, right? i can't say that i would not recommend cold caps to others, but i would advise some creative hair styles for this period. it is hard to cover the crown of your head when there is very little hair-- any ideas from this very creative group?0 -
Portlandlady thanks for the update. Glad to hear you are doing so great!! It IS quite a slog, isnt it? So glad you are through to this point. You will rock rads.
aef I had some thin spots on top and a wider part than normal and I used toppik fibers in my color. totally covers the shiny scalp. It grew back in quickly, i used them only about a month.
GOOD luck and hugs!
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aef, have you tried headbands? No idea if that would work or not with your current hair situation or with your style, but just trying to think of what I might try.What drug regimin were you on?
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