Cold Caps Users Past and Present, to Save Hair
Comments
-
serenitywisdom: I didn't find success with any of the natural deodorants, including Tom's, Nature's Gate, etc., but everybody is different. I did find success with Trader Joe's with cotton fibers -- really helps keep me dry. For anything super-important, like a big job presentation or talk, I will put on a little of my old deodorant. It's mostly important during chemo to not use aluminum, as it is absorbed into the bloodstream and creates a bonding agent at the root of the hair follicle, effectively "trapping" chemo there and possibly causing permanent damage to the follicle.
soccergirl: thanks for the explanation of silica. For some reason I am having trouble finding it; did you get it at a CVS-type pharmacy, or a natural vitamin place? I'm two years PFC and doing mighty-fine; however, my nails are still weak. They seem to have improved in the last few weeks, not sure why. Btw, have a great time at Yosemite, one of my favorite places. You can do it!
hbb: my hair felt incredibly yukky that first 1-2 weeks. Oily, I felt like it was flakey as the drying effects of chemo began making that outer scalp start to peel. I felt like I had the world's worst oily dandruff or something. Because I swim every day (including throughout chemo), I rinsed my hair every day -- that helped a lot. In the second week, around the time the shedding started, I found that the scalp and hair adjusted to the infrequent washing. By about the 3rd week or so, it started to feel kind of normal. As it got dryer throughout treatments, after some swims I would use a dab of conditioner on the strands to keep it as silky and soft as I could.
Hbb again: Which SEs are you experiencing? I found that proper diet (depending on which days you were in the chemo cycle), heavy hydration (1 oz water per pound you weigh, daily), exercise - to detox and also to oxygenate your red blood cells, and *accupuncture* were my best tools in preventing or relieving SEs.
Have a great weekend everyone!
Cheers,
Susan
0 -
Seb thanks for the tips. If you rinsed your hair every day did you comb it too? I'm scared to comb it all out!! Did you ever wear a hat or headband, etc? I bought a very light straw hat that I may wear from time to time in public.
Has anyone on TCH experienced a rash?0 -
I've not had a rash hbb. It could be an allergic reaction - best to call onc's office just to be safe.
Just washed my hair 3 days after my 4th and final TCH. Quite a bit of shedding today.
I am trying to remind myself this happens every time I first wash my hair after a round of chemo. I believe it is because you go like a whole 6 or 7 days without washing your hair, so there is quite a bit of normal "shedding" that is also going on and hasn't been washed out. Just a head's up to newbies so this doesn't freak you out! It's always scary...but I still have my hair! 0 -
Today I washed and blow dried my hair and not one hair came out. So six weeks since last chemo, eye brows and lashes are growing fast. When I look in the mirror I can't see any skin only hair. My nails are falling off lost three upto now and my skin and face looks less like a zombie.
I feel so much better and apart from being a little tired after doing housework I feel back to normal. The only other SE from chemo Is early stage cataracts so I need reading glasses.0 -
hbb: yes, I combed my hair every day, more than once - morning shower, daily swim, and on a hot day or after hiking, maybe a third shower or rinse. It is past my shoulder, thick and curly (now super-curly), and tangles easily. Plus, I swam every day and though my pool uses ozone instead of chlorine, I wanted to keep it as clean as possible. [If anybody here swims, my PCC writeup includes how I handled my hair during my daily swims.] I stroked the conditioner on and only used a pick-type comb, always working from the end of the hair (where the tangles usually are); the water running down my hair usually "combed" much of my hair for me, honestly. I have changed the way I lather my shampoo, as a big double-handfull of hair being lathered in a big ball makes it tangle pretty fast. I sometimes used a large clip to loosely clip my hair up, or a soft scrunchie, but nothing that pulled at the root. I wore hats to keep sun off -- golfing, hiking, but I did not curtail my activities in any way other than motorcycling. I did not go on motorcycle rides during chemo because I didn't want to have foggy brain and because the helmet gets hot, but I was back on wheels as soon as I felt up to it and with my riding buddy. Back then, we didn't know to use the caps between treatments, or to begin taking iron. If I'd done that, I'd probably only have lost 4% of my hair (I lost another 6% PFC, but only 10% overall).
The shedding is heaviest when you wash, but you are getting a full week's worth of hair compared to washing daily. I am a heavy shedder anyway - 50-100 hairs when I wash my hair -- before I started my chemo, but had decided on caps, I'm glad I counted.
I never let myself get freaked out during this process -- I was an earlyish user and didn't even know if PCCs would work back then, and I kept positive about every aspect of caps and treatment. Still am. Every day I had any hair on my head, I considered a major success, and I was determined to show the naysayers they were wrong. I was right, and in the process I opened the eyes of many people. (I work at a hospital, and hundreds folks were following along and supporting me, including the CEO, the oncology team, etc. In fact, I've coached many women from work. Some have worked right through chemo using the caps, and nobody knew they had cancer or were going through chemo. A few decided not to use the caps, but told me just having the *choice* made it much easier to cope with the day their hair fell out.)
Keep on keepin' on, everybody! You are doing great!! It still amazes me that one can come through chemo worrying about needing a hair cut and some color...I think that's awesome.
Cheers,
Susan
0 -
I am so thrilled that I used cold caps! It was the only thing I had control over during the chemo process! I had little shedding and now, 5 weeks post last treatment, I have all of my hair. I also used Latisse on my eye lashes and eyebrows to great success. The other great thing about not losing my hair is that unless I told someone that I had breast cancer, they had no clue. Frankly, it helped me each time I looked in the mirror I didn't look sick. Consider myself really fortunate. Now in the radiation slog! Half way through, thank goodness.
0 -
Susan: I bought the silica from a whole foods and or vitamin shop. I have used 2 prodcuts. One the product is called Flora and the other is Biosil. You can get either online.
0 -
I have stopped using deodorants with aluminum and it does take getting used to as they don't control the wetness. I was told by the woman who orders the natural deodorants at the local health store that deodorant does not work the same on everyone. You may need to try quite a few to get one you like. Two I like best so far are Nature's Gate and Nature de France. I also tried Bubble & Bee's lemon scented stick and loved the scent but the one I got was a white solid stick and I found it messy. I need to see if they have the lemon in another form. I keep an extra deodorant in my bag to reapply during the day if needed.
Soccer Girl, I have heard about MGH 3d machine and was going to ask my surgeon about it when I saw her next. I feel with the scar tissue I now have, which feels like a lot with some numbness on one side, regular mammograms are useless to me. I'm told every other year I will get a breast MRI. I feel more confident with that. It is what found the tumor in my other breast that did not show up at all in the original mammo and ended up being cancerous as well. Who knows how long it would have been there growing and spreading if it had not been found by the MRI. I would call my hair fried as well and wonder when it starts looking good again? Also, did you say your brows and lashes fell out a second time? I finished chemo in March and my brows have grown back and my lashes filled back in. I'm hoping I don't have them all start coming out again.
Hortense, I used a blow dryer on cool, while also pressing the extra cool button, the whole time on chemo. I also used a flat iron on my bangs as they curl. I never got the iron close to my scalp and kept the flat iron on a lower setting.
0 -
marie3: I had my radiation done at MGH and my onc is from Dana Farber. Each of the two doctors had two different schools of thought when it comes to check ups. Btw, I loved both of the them. My ONC from the Dana claims to be a what he says" a minimalist". He said the new machine at MGH will give a lot of false positives and that a regular mammogram would be fine. My doctor at MGH insisted with having dense breasts I should have my mammogram done at MGH with new machine. I went with the MGH mammogram and was called back for more pictures, but everything was okay! My ONC from the Dana predicted that would happen.
It took a while for me for my hair to look healthy. I had long curly hair which is dry by nature. I took very good care of it before cancer and could easily spend an hour styling it. At the three month mark I cut 4 or 5 inches off. The hair could not be brought back. I used clip in hair extensions and wore two braids. They looked cute and I wore cute hats with it. Although this look was noot ideal, I kept thinking of the alternative! I let the hair air dry. Also, my curl pattern changed a bit after chemo. The hair by the nape of my neck did not curl nicely for a while. I am 8 months post chemo and hair is so much better. It is hard to say exactly how long it took. I am and was diligent about deep conditioning, taking vitamins, exercising and eating well. Now that I am further out, I just need to wait for new hair to catch up to old hair. Now that I see all the new hair( four inches in length) I am like wow, I lost more hair than I thought! I am almost there! Then, I will get a propper hair cut. I highlighted my whole head at the four month mark but had cut off the dead hair.
I never lost all lashes or brows. They have had two thinning periods and I think my nails have been in the same cycle too.
On another note, I did remove the tattooes from radiation. Some insurance companies cover the lazer procedure. My scar from the surgery was barely detectable but the f****** blue dots were driving me crazy. I highly reccommend it!
Each day moving forward gets so much better!
0 -
HBB I got that rash on my third cycle! It was the worst! Call ur doctor!
0 -
I am 10 weeks post chemo. 4 AC and 4Taxol. Lost what I thought was a lot of hair after 3rd AC and then I really lost nothing. Started losing hair again whenever I shampooed and combed after 3rd Taxol and it never stopped. I lost the most hair in the weeks after chemo was finished. I only wash my hair maybe every 6-7 days. Today I only lost a few strands. My hair loss was dramatic and got very, very thin. I am certain there was a 2 week period where I probably should have worn a wig but I was afraid I would then never take it off. I am hopeful that the shedding has now stopped. I have very visible gray, straight hair about 1 1/2 inches filling in now, especially around the hairline near my ears. Now I am desperate to color what is left. I think I may have my hair trimmed and colored with herbatint tomorrow. I am two weeks early according to PCC. Anyone else? When can I blow dry again??? Limp, gray, thin hair.
0 -
If anyone in the Bay Area can come to San Francisco (Bernal Heights) to pick this stuff up, I'd be happy to give you:
6 Elasto-Gel caps -- Worn through 2 8-hour infusions, they're in pretty good condition, possibly a little lumpy from the freezing and unfreezing.
1 Igloo 60-qt wheeled cooler -- large enough for the caps and 20 or so pounds of dry ice
And I think there's an infrared thermometer somewhere in my apartment.
We're packing up to move at the end of the month, so the sooner they can be picked up, the better.
Thanks! Diane
0 -
Soccer girl, tell me more! I'm calling the doc again tomorrow cuz I swear the rash it's getting worse instead of better!
Have any of you used Latisse to keep your eyelashes and eyebrows? I just started and i'm hoping it works!0 -
Soccer Girl,
I plan to get my tattoos removed too. I went to Lahey and they will remove them for free at their laser center!
I put a deep conditioner in my hair when it's dry and leave it in sometimes for an hour or more if I'm just home. It does make it smoother. I am using the Nutratint and plan to highlight soon as well.
0 -
The rash was the worst side effect from the chemo. It started on a Thursday night and by the time I got the cream and pills ( steriods) it was to late. The rash was everywhere and that included my scalp. I lost more hair during third infusion because I could not stop itching!
Do you have the steriods left from infusion time? If it is spreading, call the on-call doctor and get prescription strength cream and ask about taking steriods to prevent it from getting worse. I was given steriods to take in case I got the rash again during the last infusion. I did not get the rash. If you google chemocares, it desrcibes the rash I got during treatment.
I used Latisse at the end of treatment. My eyelashed thinned regardless, but the ones I kept were super long. It looked hilarious.
0 -
I'm now 5 months PFC, and the shedding is substantially less than a month ago -- possibly in normal range but I didn't keep track prior to chemo.
I'm guessing I lost 20% of my hair, but that's a wild guess. I've always had full coverage -- people might suspect I'm too lazy to get my hair colored, but no one would suspect cancer.
One more month until I get to be a natural blond again! Yahoo! I could probably color it now, but I figure why take a chance after all this?
I started latisse when I had about 8 eyelashes left about 6 weeks PFC. My lashes fell out so quickly I didn't have time to react plus I had TERRIBLE tearing for weeks which caused the skin around my eyes to become very raw.
Stick with it ladies -- and shout it from the rooftops: PENGUIN COLD CAPS WORK!!!!0 -
Yahoo LadyGrey!!!!
0 -
So only two of you used latisse? I'm hoping it works so I've already started trying it even though I know you don't lose your eyelashes till later . I'm hoping the early start will help .
Did anyone have any adverse fingernail effects?0 -
theladygray: congratulations! woo hoo! Tell everyone!
hbb: There have been many women on the list who have used latisse. You can scroll through the hundreds of pages (!) to find out more. I haven't heard any complaints...I did not use it (my MO advised against) but many women have been happy with it.
I absolutely had nail issues -- nothing dramatic, but they have been kind of chippy. I have to tend to them - filing, trimming - pretty much daily, even with biotin and a very high-protein diet. I'm two years PFC and it seems like maybe, maybe they're getting back to normal.
0 -
I used latisse. I used it for a while during chemo and then stopped. I noticed about 6-7 weeks post chemo my lashes started going. They were gone in a week but the good news is the latisse made them grow in SUPER FAST! I had full, long lashes within a few weeks.
0 -
I read that I will need 80 lbs of dry ice. Where did you buy that?
0 -
It says 80# of ice in the paperwork, but let me tell you - if you are picking up the dry ice the night before, you will need 100# b/c of needing the ice to stay cold a full 24 hrs +. I had trouble keeping my ice cold enough for the last 2 or 3 hours when I used 80#...you don't want that problem! You may need to pick up the ice the night before b/c you have to put the caps on ice 3 hours before chemo -if chemo is in the morning, you'll have to get up early to do this, and dry ice stores won't be open then.
Welcome, btw!!!
Oh, and it is cheaper if you can find a dry ice distributor vs say Publix. Put in your zipcode on this and search for one near you:
0 -
I'm 12 days out and so far so , when does the shedding start?
0 -
hbb, I guess the only advice I can think of is to stay on top of nausea, take your medication at the first signs or even before. I had really bad taste issues, and when nothing sounded good, popcicles and fudge bars helped.
I don't think anyone sheds until around the 20th day. I did not shed much at all during treatment, ( 6 TCH). I did shed after, but hardly any even then.
0 -
Laura, is your hair thicker or not? I have curly hair that looks thick but is really on the thinner side and I've heard that actually its the thicker people that shed more. I don't really care as long as I don't go bald!!
Thanks for the tips,I reread my post, it was supposed to say so far so good but the good got left out, lol. I had the taste issues too but only for a few days. I managed as well as I could. I'm hoping to only do four treatments instead of six, but we'll see what happens. Something in the tch has caused this horrible pustuous acne style rash on my face that I can not get rid of. Ever experience this?0 -
Also, what have all of you done in the summer? I'm so paranoid just being outside that the sun on my head will heat it up and make the hair fall out!!!
0 -
hbb - I had that nasty pimple rash all over my chin after the 1st round only. I washed it with gentle cleanser (Cetaphil) per my onc. Otherwise I left it alone. It got better in a week or two. It could be due to the TCH, or it could be due to the steroids.
I believe I started shedding just a small amount around day 18 (the last wash just prior to TCH #2). I've continued to shed since. The worst is when you wash after chemo, b/c you've gone 6 or 7 days without washing. At least that's the way it was for me.
BTW, my hair is very thin and fine to start with.
0 -
I stay out of the sun. Don't feel well in the heat anyways, so just avoiding it. Plus I burn really easy. I'm a shade goddess.
0 -
Dance,I wash with cetaphil but my face is awful!!! It better go away soon!
0 -
hbb - if it doesn't, maybe see a dermatologist? Or book with one now in case it doesn't get better. Mine did, though, so hopefully yours will, too, soon!
0
