Cold Caps Users Past and Present, to Save Hair
Comments
-
Thanks Laura and mdg!! Great suggestion Laura that I add it to my signature-Now why didn't I think of that! mdg I've got lots and lots of pics. I will add your blog once I create my links page. Maybe I will create a slide for each patient so others can see their progress, before and after. I just don't want the page to look cluttered...
tmb173-The Advance Cold Cap Services uses Elastogel caps. You can buy the caps directly from the manufacturer http://elastogels.com/elasto-gel-cancer-care-cranial-helmet
The caps have mixed results-some have success but with your hair type I would recommend using the Penguin caps if you can afford to. DO NOT do anything to your hair now! No cutting or relaxing. I know you want to look good for the event, but, consider instead how you will look for a full 6 months following chemo. When the Penguin caps are cooled with dry ice the company rents to you 8 caps. If you decide to use the Elastogel caps try to get 8 caps also, if you can afford to. The Elastogels are thinner than the Penguin caps so, they heat up faster. I suggest changing them more frequently than the Penguin caps, which are changed every 1/2 an hour. For Elastogel's I would change every 20 min., especially so with your hair type.
0 -
tmb173, I helped a lady who used Elastogels, and she had a terrible time shaping them to her head, which is so important. She wished that she had used Penguin.
0 -
Thank you everyone!! I will look into penguin.
0 -
Shipsgirl - yes - that happened to me briefly. I would let your MO know, as depending on the severity of side effects, they sometimes lower the dosage the next time.
0 -
Hello everyone - I am 5 wks PFC and am still shedding. Is this normal? It seemed to have stopped a few weeks ago - leaving me with about 50% of my hair - scraggly and brittle - but hair. I just had my surgery this week - still in bandages and I wonder if being bedridden for 2 days in hospital did it? I did have a big knot in the back of my head that basically fell out when I got home. My hair is shorter now, and thinner still. I have been caring for it carefully ( no cutting, styling, or blow drying, am washing in low flow cool water, once a week) , but I admit I appled some color (all organic, no ammonia, etc) to the roots a couple of weeks ago. Couldn't stand the gray any longer, and the Colormarks just wern't enough to cover. Perhaps that is why I shed some more? Any thoughts?
0 -
I can't figure out how to post something in my 'signature'. Can someone tell me does it go under biography?
0 -
Nevermind...LOL
0 -
Tmb and kaydee, I also did the caps with TC and had great results...I posted a picture beck around March 31. You will do well, too!
Tmb, I have read every page in this board, and recall a lot of negative things about Advanced...you may want to search here to read more. There are a few ladies who had success with the Elastogels themselves, ArleneA is one I remember...although I am no expert on the hair treatment you asked about, my advice is that 2 weeks is too close to do any cutting or chemical treatment. I got a very gentle 1/4" trim about a month before because I was told it was already too late for anything else. If you talk to the PCC rep, they'll know for sure.
Good luck to you both, keep your questions coming!
Makingway, your updated site looks great - I hope you get lots of traffic after the Doctors episode.
Shipsgirl, so glad you took something to relax you this time...it was me who suggested it and I was keeping my fingers crossed that it worked for you!
0 -
Hope, Thank you! It was a big contributing factor to the smooth operation. The whole experience was much better.
0 -
OMG, two months post-PFC and I just took my first gentle warm-ish "standing up" shower (as opposed to the tub and cup method). Only four hairs were in the strainer. I feel so normal! Your time will come, for all of those currently in treatment. It is SOOOO worth it to do the cold caps.
I have been crazy busy at work for a few days so could not post, but here are answers to two questions I just saw:
I used small bags of frozen petite peas placed in the dry ice cooler, for my nails. changed them our when not so cold. I did that during the T and C part of my TCH, no need with herceptin. The only time I took my fingers out of those peas was to knead the caps- also cold. And fingerless mittens help.
I had no nail damage and no neuropoathy! I work with my hands on tiny things, so thank gosh.
Turmeric- a lifesaver for me- no more asthma and it is a great general anti-inflammatory. My docs said sure, no problem taking those caps except maybe not on infusion days just to be safe. I take the "oregon's wild harvest" three caps a day at 825 mg total. world of difference, at least in my breathing. These are sold at Whole Foods.
Good luck to everyone!0 -
Tmb -
Please don't use any chemicals on your hair before chemo! I made the mistake of thinking "It can't be that bad and I really need to do my hair or I will look awful" only to find out after chemo ended that it WAS that bad. I experienced a lot of breakage at the exact point between my bleached hair and the natural hair which had grown steadily all during chemo. There was a sort of knot that could be felt where the two met and was the point where the hair would break off, which made me realize that something bad had happened.
I believe that it is essential to have natural roots so that when the chemo in your blood after you stop wearing cold caps finally reaches the follicles it comes into contact with healthy strong hair, not hair that has been weakened by any sort of chemicals such as relaxer or bleach.
Speak to Geryln at Penguin about your hair type as I believe that can affect the temperature you need to be using. I think I have read a number of times that people with African-American hair as well as those with a very thick volume of hair need to have their caps a few degrees colder to be effective. You might need extra straps to hold the caps closer to your scalp as well. She would know.
Jlow and Ali68 - Congratulations! You both sound as if you are doing well.
Sciencegal and Kaydee - Thank you for your information about taking Turmeric. I enjoyed it in a spicy curry at a restaurant in NY last night and it was lovely. Unfortunately, I cannot cook with it as my DH can't eat spicy foods, so capsules it will be.
shipsgirl - (TMI warning) I had the same urgent bladder symptoms and had to scurry to the bathroom in the middle of the night all through chemo or risk disaster and private humiliation. Perhaps it was caused by all the liquids I had to drink every day and the juicy fruit I was eating to help keep myself hydrated, but it wasn't fun. I am more or less back to normal ten months after my last T/C treatment, but not exactly. I no longer have to go at night and haven't for many months, but I still feel urgency sometimes during the day when there turns out to be little need. And, like you I also experienced dribbles during chemo, usually when I couldn't get to a bathroom fast enough, but also sometimes when I coughed, sneezed or laughed too hard which were embarrassing even though only I knew about them. I took to wearing a thin pad, especially when I went anywhere.
Those unexpected leaks have diminished, but not to the point that I trust myself entirely. I think it may be a lasting "gift" of chemo. I don't wear a pad when I am at home, but I almost always wear a thin pad when I leave the house. I also carry an extra tucked into my purse in case I might need it, which so far I haven't. This may be something I will have to live with. OTOH, I understand occassional leaking is a problem that many women develop as they get older or after they have children, so maybe chemo just started it earlier than I would have naturally gotten it.
0 -
Hortense - How long before chemo did you color your hair? My docs thought I would not need chemo before my surgery so I wasn't doing any research on it. Turns out I did have node involvement - so here I am. I had it colored two weeks ago - and could start chemo in another two weeks- so I'm not touching anything - but wondering if I've already done too much damage.
Sciencegal - A real shower whoo hoooo! And with minimal hair loss. That's great. Thanks for the frozen peas tip... I'm adding it to my list.
hope49 - I tried to find your photo post - but no luck. I'm still trying to navigate the site and hopefully I'll stumble upon that forum.
Everyone - could you give me some insight on getting a haircut/blow dry 1-2 weeks before chemo? Would that be too harsh? I'm thinking I would like it at a more managable length between chin and shoulder. Was also thinking that if I blow dry my curls straight - maybe the caps will work better?
Thank you all for your advice,
Kay
0 -
Hi kaydee, I found the picture back on page 269...I would not recommend the haircut this close to chemo. The blow dry should be fine, I did that the day before ( for the last time, sigh). I had only a gentle 1/4" trim before chemo but it was almost a month prior. I think it may be too late and you don't want to take any chances. Also, I've heard the longer hair is actually better, something about stronger roots because it's supporting more???
0 -
Thanks hope, have a great weekend!
0 -
Kaydee - I lightened my roots six days before chemo (so incredibly dumb in hindsight
). If you colored your's two weeks ago and have two more weeks before chemo, I think you should be fine. You will have about a quarter to a half an inch of untreated growth clear of you scalp by then, so should be alright because the treated hair will not be in contact with your scalp or any residual chemo.Definitely ice your nails and your toenails to prevent nail damage and neuropathy during Taxotere. I used ziplock bags and peas for my hands the first time - the peas were kind of fun to play with, but I used crushed ice the next times simply because it was more convenient for me. I brought frozen gel packs for my feet, just the kind I already had for picnics, cheap hardware store gel pacs. I'd put a folded towel on the floor as insulation and to absorb any condensation, put two large pacs in it, then my bare feet, then I would lay two more gel packs across my toes. I had no problem with neuropathy or my nails. I did feel a slight tingling in the very tips of two fingers after the first session but it went away, so I am very glad I iced. My surgeon still looks at my hands at each visit and seems amazed that I had no damage. I keep reminding her that I iced.
Like you, I was surprised and none too pleased to find out I needed chemo, but two out of the two nodes removed tested for cancer - and also for indolent Lymphoma which was fun to learn. Fortunately, it is happily asleep now and the hope is that it will remain that way.
Good luck in your treatments!
0 -
I'm a little concerned that I blew it. Here I was, feeling like we got the cold cap choas licked in #2, and now I realized that we didn't massage them while I was wearing them. Rats. There is nothing I can do, of course. But I'm kicking myself because I wasn't vigilant enough.
This is day 18 from #1 so I guess I'm about to find out. I notice body hair is slowly departing already but my head is not shedding at all so far. Even my psoriasis has settled down a little and I don't have to resist scratching so much. Fingers crossed and we'll see. If I lose it, at least I've tried.
0 -
Shipsgirl...I forgot to massage them on the first two chemos...I did it on the last two. I still had hair....don't stress! It will be OK!!!
0 -
Hooray Mdg!!!! Thank you for those very encouraging words. I did wear the caps an hour longer because I know ACT is so challenging. I kind of hoped that would offset it a little. I feel so much better though. Thanks again.
0 -
ecarol - I noticed none of us answered your question, sorry. Yes, it is normal to be shedding long after chemo ends. A few lucky ladies don't seem to, but the rest of us did. Some seem to stop earlier than others. I hope your's will stop soon. I was among the longer ones. Mine didn't stop until 16 weeks after my last treatment. I had seen a few others go to 16 weeks, so I tried to accept that I might and, sure enough, I did.
It seemed to last forever, but as others reported, when it stopped, it did suddenly. One day I didn't shed a single hair, and didn't shed another for two to three months afterwards. I seem to be back to my pre-chemo pattern now.On the other hand, I could not really tell what was actually shedding from the follicles and what was just breakage as I had damaged my hair by lightening it just before starting chemo and a lot of my long hair started breaking off where it meet the natural uncolored part of the strand, so I had long strands sliding off all the time. I studied the lost hairs but simply couldn't determine which were shed and which were broken as the broken ones had a bump from chemo damage at the ends that looked an awful lot like the root bumps at the ends of shed hair. I ended up with a full coverage, but my hair thinned out and looked wispy as it got longer. I had to keep trimming it shorter until it just brushed my shoulders, but it looks thick and healthy now, ten months PFC.
Have you tried washing with a different shampoo to get your hair and scalp really clean? Doing that really surprised me and showed me that I had kept a lot more hair than I had thought I had. It looked fuller and healthier as well as cleaner and my scalp felt better. I used "Nioxin #4 for chemically enhanced noticably thinning hair" shampoo and conditioner. I would put it on using cool water and let the shamoo sit for a while to soften up everything while I showered the rest of me in warm water, then I'd gently run my fingers through my hair at scalp level to help get it clean before rinsing in cool and putting on conditioner which I let sit a few minutes to work its magic before rising it away.
I was able to find it at my local TJ Maxx, but it's available on amazon. It's not organic, but I figured that using it for a short while it probably wouldn't kill me - not if the chemo didn't!
Hope you are feeling better.
0 -
Yes ecarol....I shed for a very long time after chemo. I finished it the first week of May and shed until September! Then it just stopped. By then though I had so much hair growing in like crazy. Remember that hair will fall out before new hair can grow in that follicle.
0 -
Thank you Hortense, especially for all the detail on the icing. I'm going to be working on a system so I can practice beforehand.
0 -
kaydee, the icing also worked well for me - I had no problems at all with fingers or toes. I followed pretty much what Hortense outlines, but I did wear thin knit gloves and socks during that time - start 10 mins before Taxotere and then keep on ice 15 mins after. When it got kind of unbearable, I just pulled off the ice for a few seconds and then back on. I also followed a nail care protocol which is dark polish the day of chemo then the next day replace with Sally Hansen's Hard as Nails - add another coat for 7 days then remove and repeat until next chemo when you do the dark polish again. My nails not ony survived they thrived - never looked better and my MO was amazed how good they looked...with that and my hair, he was jokingly asking if I actually did the chemo - did I pull out the IV? LOL Good luck!
0 -
Hi ladies. I'm letting out a huge sigh of relief. I just got home from my oldest daughter's college graduation. She attends college out of state and we were gone for three days. This was days 15-18 from my first TC treatment and I was so nervous that I would be attending without hair or that my hair would start falling out over the weekend. But I'm thrilled to report that my hair's still on my head and it felt great that I looked normal. I don't know what the next few days will bring, but if I can make it with hair until my second treatment this Thursday then I might start to believe that the caps are working.
0 -
jc254 - Congratulations on your daughter's graduation! It's such an accomplishment. How lovely that you looked normal and I hope you felt well. My son graduates in about two weeks and I am looking forward to going to it.
You should start shedding anyday now, though. It's not bad, just unsettling as we are so nervous about possibly going bald. But, because you are using cold caps, you will NOT go bald.
During shedding you will just notice individual hairs sliding down and hanging lower than the others, not bunches of hair, just singles with an occassional one hanging onto another like onto a rope. You pick the loose one or ones off and toss it/them out, but not long after you glance in a mirror and notice another one hanging lower than the rest. It goes on slowly all day until it seems there are always some to be picked off of our sweathers or t-shirts. If you collected them, you would probably find on your worst day that there were no more than 300, and more likely 200 lost, out of the 100,000 or more on your head. Try not to worry (but, we all do). You will be fine.
0 -
kaydee - I am also in the Atlanta area, but my PCC rep was in Michigan. I am looking forward to Wednesday for my 4th and final treatment!! I still have 90% of my hair. The caps have been a God send!
0 -
Hortense thanks for the great description of shedding. Going into it, you're not sure what exactly shedding will be, but what you described is exactly what started for me around day 17. It accelerated after treatment number 2 but thankfully seems to have slowed again. I'm now on day 33 and you'd never know I've lost any hair. The unwashed, unstyled, going gray look isn't fun but at least I have it!!!
JLow-congrats on nearing the finish line! I'm about 4 weeks behind you and cheering you on!0 -
Wow, I never massaged the caps. Maybe my helper massaged them? Maybe I would have kept more of my hair! I did keep most of it though i did lose quite a bit, but my hair was VERY thick to start with.
Just wondering, does anyone NOT keep their hair with these things? They really do seem to work.
Another question -- does anyone other than me think the PCC people don't do a very good job marketing them?
0 -
Phew! I think I made it through another one. I'm day 6 on round 2 and feel like the worst of that one is behind me. It was tough, but I think not as bad as the first because the nausea was under control. I still felt like I'd been run over by a truck though!
That makes this day 20 from round 1 and still no sign of shedding. I know it will come and thanks to all of you pioneers, I'm somewhat prepared, but I can see it's a little nerve wracking. I haven't had the energy to wash my hair so that will be today, and I am a little scared to. On the other hand, from reading other boards on here, if my hair was going to really part company with my head, I think its migration would be well underway already.
While there's hair, there's hope.
0 -
I love the "while there's hair, there's hope" comment! Agreed. It is great to have control over this one thing in our treatment. I think my attitude and the path to rrecovery are both so much better due to having the power to save my hair and feel like "me" through the chemo.
Hang in there and please try not to stress too much girls - the caps work!0 -
Shipgirl - glad to hear you are doing well! yes, you definitely would have parted ways with your hair by now if it was going to leave you. The caps will work!
I have to admit, i have had major loss in the back at the nape. It does bother me. The sides and top still look good. I am waiting for some extensions to be ordered by the store for me. I hope that makes me feel better as i do feel sad about the thinness at the back of my head. I also have these really gross big flakes on my head that are hard to get out. I think i read somewhere that someone used vinegar - i am scared to put anything on my head at this point. Any tips?
Glad to hear everyone is doing well.
curly0
