Cold Caps Users Past and Present, to Save Hair
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MJE123, Lmflynn, sashasz3, sebm9 -- thanks so much for the encouragement -- it means so much to me cause I feel like there is hair everywhere right now. Ok, I'll get a grip
and try to get 'off the ledge' -- that cracked me up by the way! My husband and I went out tonight to a NYE party and people are so nice it kind of lifted me up again and when I got home I found your encouraging words too! Thank you, thank you -- my best to all of you! I guess today was my day to 'crack' -- I think I've been holding up 'too well'. I've been little miss bravewoman through everything until I saw the hair flying away today Plus I seem to have a light cold and just haven't felt the greatest. Wow, won't it be great when we're all finished with treatment and can hopefully put this behind us!?!? Tomorrow I'll try the caps out of the freezer routine in hopes of hanging on.... Diagnosis: 10/29/2010, IDC, <1cm, Stage IIa, Grade 3, 3/4 nodes, ER+/PR+, HER2-
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Finished my fourth and last chemo on Monday. I've definitely felt much more tired since. The old thing about additive affects must be true. After my first chemo I had a major shed right before my second chemo. Since then it has been about four or five days after chemo. I still have hair, but it is oh so thin. I have that feeling in my scalp like it is going to shed a bunch tomorrow. If everything plays out, I'm not going to have much hair left since I'll still have one more shed. I hadn't heard of using the caps between chemos. Might give it a try, but it's probably too late for me. A little hair is still better than none. I'm thinking of getting a trim to a short pixie cut so that the thinness isn't as apparent.
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It's day 19 for me and I am shedding too. I'm basically avoiding combing or even touching my hair so I don't have to see how much is coming out. My scalp definitely feels funny but I'm not sure how much of that is due to missing my daily hair wash. A lot of the fall out seems to be around my side burns which others have suggested is fairly common. I'm just crossing my fingers until Monday which is hair washing day. I'm adopting the technique of putting the collected hair in a baggie. So far the amount in the baggie is a lot less than what's on my head. My next chemo is on the 6th and I really want to walk in there with hair.
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Hi,
Its day 17 for me and hair washing day, I too am always nervous to wash my hair, each week, still have eyebrows etc...definately shedding some hair, but I always did. My scalp does feel funny, a little sore, like when you have it in a clip too long, weird. am using keracare shampoo, and purology leave in conditioner on the ends...thankful to have my hair, fingers are crossed.
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Julia1969: Congratulations on finishing chemo! woo hoo! It was the most tiring for me also (4TC), the one where I struggled with my normal routine at times, but then one day I felt a little better, and I could feel the rebound begin. Mentally, that was everything! This is the stage where keeping up with exercise and activity and movement -- even walking up and down the hallway -- will help, by oxygenating your red blood cells and reviving them.
My hair felt incredibly thin (to me) at that point, and the continued shedding was challenging because on one hand I felt like I was done -- with chemo -- but I had to remember that I'd still be coping with the effects of the treatment for a long time. I found I made a transition -- mentally, from battling cancer on a daily basis (with chemo and SEs) to the longer-term effects. Am still coping with the effects. I have to keep reminding myself of what I've been through this year! Then I chuckle, because I think "Hey, how could I even forget?"
The cold caps from the freezer -- or any cold -- will stimulate hair growth, so the hair you've lost will come back more quickly. My new hairs that were 2" long at Thanksgiving are over 3" long already and beginning to blend in with the rest of my hair. My scalp feels fuller, and I only notice the thin-ness if I pull it to a pony tail. If I clip it up, it looks completely normal. Hopefully your new haircut will help!
Susan
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Julia1969~
Congrats on finishing!
Hope your New Year is a hair-full, healthy, happy one...
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Susan, Thanks for the reality check. I know from the other chemos that I'll be feeling pretty good in a few days. This hair thing is so hard. I want it to work as the first Kaiser patient, as a pioneer, and for myself. I don't like the thin haired old woman I sometimes see in the mirror when I'm tired. I don't like not being able to keep up appearences with keeping up hair color and style. I know that this will pass, but it isn't easy having to wait. I guess being a bald old lady looking in the mirror and waiting impatiently for any growth is so much worse than thin and uncolored. I haven't sent my caps in yet, so I'm chilling one off to put on later tonight. I could use a little stimuation in my life!
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Julia, As the first chemo patient at Kaiser to be worried about when to color your hair post-chemo, you already ARE a pioneer! I can't think of a better look :-).
Hang in there. The shedding is normal -- and varies for everyone -- but you have protected your hair follicles from the chemo you went through. You'll probably find they've already started re-growing -- I didn't notice my regrowth until they were about an inch long and super-curly.
I took a hilarious picture last night, my hair decided to do crazy things and stick up straight and turn every which-way. I looked like fireworks! Probably many women were spending hours last night getting their hair just right for NYE. Me, I celebrated a new year and a new start by letting my hair go where it wanted, just glad to have it. If I hadn't done PCCs, my hair probably wouldn't have even started to re-grow yet (6 mos PC). It's growing back super-healthy, and I can't wait until a few more months have passed because I think it's going to look great as it comes in.
Cheers,
Susan
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littlepenuin60 - What you describe is what I experienced as well. No significant shedding until Day 16. I had very thick hair and had thinning.
Colleen
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Going out on the ledge again -- wow the 'shedding' continues. I found the cold caps so miserable the first time and with all of this shedding I'm not feeling too positive about the next round on Wednesday. Sorry I'm feeling and being negative -- I have been up most of the night with a bad cold and coughing my head off. Has anyone used pain meds to lessen the cold cap intensity? Would love to hear how others 'coped' with the cold caps or maybe it's just me........
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littlepenguin60~ Try and stay positive! I'm about 65-70% through treatment....I am shedding a lot too and understand where you are coming from. But I keep comparing it to my sister, who went through the same treament as me --finishing 8/2009 -- and just now getting back her hair to where it looks good and on its way back to where she had it (which is still probably 6 inches away) That's almost a year and a half.... she quit wearing a wig about 2/2010 -- 4 months PFC...
I know that I will have thinner -- probably grayer, probably limper, probably not great for a while PFC ... but I'm choosing this over my sister's experieince. I'm protectinng my follicles, my hair is still here mostly and each day I get closer to the finish line.. and that finish line is much closer than the journey my sister endured.
This all sucks... I'm not trying to minimze it or say its easy b/c it's not. But trying to find the best road through it all. STAY POSITIVE!
And I take a Norco (vicodin) 30 minutes prior to the first cap, I get Ativan and Benedryl in my IV -- this from a person who refuses most meds -- it's 8-9 hours of uncomfort in a few days of a year long journey when you think about it with surgery, radiation and/or chemo. YOU CAN DO IT.. and if your second treatment is anything like mine it was TONS easier...probably b/c less anxiety and knew what to expect.
We're here for you....
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I did not find the caps so very uncomfortable, except for the first several minutes. Sometimes even the last cap was uncomfortable, but only for a few minutes. Questions- Did you use the mole skin next to your hairline to pervent burning your forehead? Also, I put lovely flaps of panty liners on over my ears to protect them as well. They are easily burnt as well.
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I also found the second time around easier. I used the moleskin on my forehead and found that it worked very well. I used tiny infant socks with the elastic for my ears and found that they worked better than panty liners. For me only the first 5 minutes of each cap was uncomfortable and was easier thereafter. I did 16 caps each of the two sessions. I feel that it is definitely doable and worth the temporary discomfort in exchange for keeping my hair. Right now I am day 29 and have had only very minimal shedding and have basically all of my hair. I have had 2 session of TC and 2 to go. The second infusion was much better in terms of SE. None of us want to be in this position doing this but I think you have to view it as a short term, temporary inconvenience as a means to an end
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I finished my second TCH tx--on wedsnesday--so far no Se's--really weird----I even did an extra workout and went to a Eagles game party-----hair--wise--not so good--still major shedding--this is about the 5th day now--just starting to notice it in feel----don't see how this can continue--and me winding up with hair--still pressing on--doing my caps an hour every other day----so hard to have hope--but the funny thing I do!!
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Lmflynn, Julia1969 and others:
I have good news. 10 days PFC (post-final chemo), and I have new hair growing around my left ear already! My hairdresser verified it yesterday. This is the spot I lost it first in. It's wispy and different lengths, but definitely new! I wasn't grey here before, but it's grey in front of my ear now, and brown farther back. I'm still shedding, but it makes it a lot more bearable knowing there is stuff growing back as well. So, there is light at the end of the tunnel, not very far away!
Also, I didn't find the last chemo to be any tiring or worse than the others; in fact I'm feeling pretty good already. Lucky60
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Thank you so much for the post!!! Tonight was my hair wash day ... and I have shed probably 150 hairs maybe more ... (no I didn't count -- :-) ...but more than any day so far) I needed your post. Day 51... still counting.....
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Hang in there penguinistas!
Frank asked me to write up a summary of my Cold Cap process and include some photos for the website. Soon you all will be able to do the same thing...
I am planning on writing about how grateful I am to have been able to use the Cold Caps and how they helped me mentally during a very difficult time...
Know that my thoughts are with you all.
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Hi everyone,
Hope New Year's Eve was good for all of you.
I'm starting chemo on Fri. Jan. 7th. It's exactly 8 weeks from my surgery. I'm worried that it's taken so long--the oncologist was on vacation. Same theing happened with my surgery, it was delayed because Dr. went on vacation. How aggresive and fast is HER2?
I have a question, did anyone of you have any scans to other or all parts of the body to see if cancer was present anywhere else? My medical Dr.'s asked me if I had any other scans or tests. Some male friends who had prostate cancer and other cancers have told me they had PET Scans to whole body to check for cancer. I thought that they would so this just to be sure. Does checking the nodes accomplish this?
By the way, my sister-in-law is going to come and help my husband with the cold caps for the first couple of hours. I'm really glad, I think it will be easier on my husband, if she is there, at least in the beginning until he gets the hang of it. She has to go to work afterwards, but can manage a few hours off.
Well it's late and I'm tired so I'll say good night.
Keep positive!!!
Nancy
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I have some questions to clarify the hair loss issues - what chemo combination are those of you on who are experiencing this problem? Does anyone have a definitive answer about using caps in between chemo sessions and does it apply to all chemo or only certian types? I am thinking that some drug combinations are harder on the hair than others, maybe?
To those of you using caps at home - how cold is your freezer? I have a dedicated freezer set at -23C but the caps test out at between -9 and -18C.
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motherofpatient,
Yes different chemo regimens will have different effects on hair follicles. From what I have researched Adriamycin seems to be definitely harder on the hair. Maybe we can get some feedback on those doing the AC regimen compared to TC. I am currently doing TC x4 and have not had any hair loss other than very minimal shedding around days 18-20. I have had 2 treatment sessions and am day 29 currently with all of my hair.
In regards to wearing the caps in between sessions I do not have a definitive answer on whether this provides any defined benefit. I know that some on the thread are currently doing it
After each session I put the caps in the freezer until the next infusion. The freezer is not going to get the caps down to the temp that you need which is -32 degrees or so just prior to chemo. My experience of the temps just out of the regular freezer are around -10-15 degrees
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Lucky60,
Great news!! Congratulations on being done with chemo and putting it behind you. Congrats on the new hair growth also!
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keeppositive - don't worry about the delay of chemo. I didn't start chemo until almost 10 weeks after my definitive surgery. I did a lot of research at the time because I was worried and I found nothing that seemed to show a worse prognisis if you wait 8 weeks. You've had your surgery so let's hope they've gotten it all and the chemo is just preventative. Most cancers takes a long time to grow so an extra week or 2 should not make a difference.
Scans are not part of the standard of care for stage 1 so I'm not surprised that you did not get scans. I know it's all scary. I'm so glad you have someone to help you at least until you guys get the hang of it. I'm sure you'll be fine. Good luck on Friday.
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keeppositive,
I also waited approx 8 weeks between surgery and the start of chemo, obtaining second and third opinions regarding the treatment recommendations. I needed to be sure before starting and did not feel that it put me at any risk in terms of waiting. I felt it was more important to make the right decision that I felt comfortable with.
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Hi everyone,
Thank you Drim and mje123 for your replies.
I heard a news item on CBS radio this morning and called the station and they told me to google Dr. Daniel Haber of Mass General Hosp. on the internet and read the articles about a new blood test he helped design for detecting cancer. I read them and it is very fascinating and very promising. Look it up--a blood test that can detect one cancer cell amongst billions of cells in your blood. Can be used to find cancer or to track treatment and if it is successful or not. They will be doing trials at a few hospitals-Memorial Sloane Kettering is one of them--I would like to volunteer to test the blood test--it's not invasive.
To motherofpatient: Frank told me to use caps at home right out of home freeezer for 2 hours 3X a week-changing every 30 minutes. Don't need to be as cold as when chemo is going in. He says it helps to keep hair .
Best to all!!
Nancy
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keeppositive,
I am a physician and work in Boston. You are correct about what is happening at MGH. They are going to be working with Johnson and Johnson, moving forward with developing and then hopefully implementing certain blood tests to detect cancerous cells in pts with metastatic dz. I am not sure how far off it is but think it may be a ways off though. It seems initially very promising according to early reports
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I 'm on day 20 of TC x 4 and washed my hair today. I feel like I'm shedding a lot. Everytime I touch my hair a few hairs come out. It's scary but I collected the hairs after my shampoo and it was still only about 4 times what I collected before-maybe 200 hairs, so it isn't much compared to the total. Does the shedding slow down a little in between treatments? My next treatment is Thursday so should I expect a slow down in hair loss until 17 days after Thursday? It's hard not to be anxious. There were hairs on my pillow this morning too. That was new for me.
Lucky 60, it was wonderful to hear about new hair growth so soon-great news for us worriers.
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littlepenguin60 - Did you take some type of pain killer at least 30 min before starting the caps? I used two generic ibuprofen every 3-4 hours and that kept the pain under control. I used Mole PADS on my forehead, without the pads I don't think I could have managed it. Wiping the moisture from the inside of the cap helps a lot.
Colleen
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4 Months PFC --
Happy New Year to All!!! Friday will be 4 months PFC. I had my hair "stained" two weeks ago and it looks great. (Don't ask me to explain what hair stain is rather than hair dye, but my great beautician said it is all natural and safe for my hair. Just like a stain in your clothes, the color does fade.)
I have noticed that with the Sea-Chi Organic Regrowth Conditioner all of my "thin" spots have filled in and grown out some. My hair was trimmed up to collar length to maxmize the the look of thickness. The overall improvement in my hair in the past two weeks is pretty dramatic (and my legs look like I need to take a shears to them).
Months 2-3 PFC are really tough mentally because you so want your hair to be back to normal, but it takes a little time for it to recover.
Colleen
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Kathy119; I had TCx4 also. I had considerable shedding starting on Day 17 after first chemo. I actually was crazy enough to not only collect the hairs in my sleeping cap each morning and count them, but to plot them on a graph for the duration. I couldn't really see much of a pattern, lots of up and down spikes that were just noise in the data, with a general downward trend from the first chemo to the last. If I had to choose the worse periods, they seemed to be a few days after chemo, days 21-24, etc perhaps, then by the week before the next chemo it would settle down a bit. Hope this helps. It's normal to fret about it--I felt like I needed a shot of whiskey before combing my hair after washing it!
Oh, another word of advice--get the caps as tight as possible. My hairdresser (who is just washing and combing my hair for me) noticed that I have the thickest hair in a circular band around from the mid-back to the front-top, exactly where those velcro straps were. It thinned everywhere else. I didn't use the extra yellow "thick hair" strap because it was so uncomfortable, but I probably shoud have figured out a way. Lucky
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Happy New Year everyone! I am 6 months PFC (TCx4) and have been back to my normal hair routine for a few months now. What's really cool is that prior to diagnosis and treatment, I had some thinning around the sides of my forehead. Not bad, but it was noticeable to me, especially if I pulled my hair back, that it was thinner than my hair elsewhere, kind of an early widows peak. Interestingly, since doing the caps and chemo, that hair has actually grown back! I seriously have better hair now than I did before chemo/caps. Crazy but true! For those of you in the midst of treatment or just getting started, take heart it will all work out! You may shed some now, but if my experience is anything to go by, your hair will grow back better, and I thank the caps for this!
Someone asked in an earlier post about using a blow dryer on the cool setting. I admit to doing this nearly daily all through treatment and it did not seem to cause me to shed more.
Good luck fellow Penguinistas!
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