Cold Caps Users Past and Present, to Save Hair
Comments
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SFMama,
hi, I did everything at UCSF (surgeries etc) except the cold capping. My mo is affiliated with them and so it was arranged for me to have my chemo/capping up in Santa Rosa. I live in Sonoma so it was closer. UCSF has medical freezers which is a big advantage, Santa Rosa does too. My husband did my capping. We work together and our our own bosses so days off were easy. Dr John Park and Hope Rugo at UCSF can advise w/cold capping. Dr Esserman (my surgeon, and Park the mo were the ones who turned me on to it. I actually think they have some kind of trial going on there right now. I'd call them
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So found out today that my MO wants to do radiation too. She wasn't 100% before. So after chemo I'll have BXM probably December 30th. Then radiation after that. Aw wel
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SFMama, I had a whole group of wonderful friends who were my cold cap helpers. Like you, I was initially hesitant to accept their offers of help. Didn't want them to use vacation days, rearrange schedules etc. Finally one of them said "You would do it for me, wouldn't you?" Well, of course I would, so that settled it and I gladly accepted the help. I had one group accompany me to the infusion center and a second group met me at home to finish the remaining few hours of capping so no one had to be there the whole 7-8 hours. Fortunately, I live about 30 minutes from the hospital. There was no need to boss them around. They took charge and did a great job and I am forever grateful to them. They later confessed how nervous they were that they would screw it up and I would lose my hair. We all cried together when I was finished and still, two years later, remain amazed that it actually worked.
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Two women are my greatest heroes, and I am so very grateful for them. I had a very good friend help me with the first treatment, but I didn't know she was dealing with some big health issues of her own that made it difficult to help me as well. She needed more medical care than me! but she got us through the first treatment anyway. I still get a lump in my throat when I think of how my sister then stepped up, took 3 vacation days to complete the rest of the treatments, and basically helped me keep my hair without once questioning or complaining. I love both of them so much.
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I wish there was a like button here. You all (and your people) blow me away.
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jbandkb1, sorry to hear you need rads after BMX. I too, had rads post BMX due to close margins.
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Jbandkb1, the piling on of circumstances is harsh. I came here with ovarian cancer (to this thread just for the capping) and then found out this summer I had TN breast cancer at the same time. Total shock. I also face BMX soon (in November). I've gained so much sanity from the camaraderie here--and have felt so much less alone. Check in and vent. Check in to say hi. Know everyone's with you. Courage sister.
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Thanks, mdg, I appreciate the encouragement!!
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Hi Angiel, just wondering, did you use the style edit during chemo, or only after your final treatment?
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pch, I didn't realize you had TN breast cancer too.
. I hope you don't have to have more chemo for that. 0 -
pch, I had no idea you were also diagnosed with breast cancer. Talk about piling on.... I agree, no one's alone here.
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pch - oh my. That is a lot of piling on. Sometimes life really slams ya. Glad you found us - let us know when you are up for BMX so we can send extra love and support!
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PCH..I had no idea you had the double whammy. I am so very sorry. Many of us have gone through BMX so let us know when you need our support! Beginning to wonder if you just loved us BC gals that you decided to join us totally....
Keep us posted with a surgery date! Are you doing reconstruction? What kind? I had expanders and implants. Happy to share with you about that. Good luck!0 -
Dancetrancer how was radiation after BMX? Did you have any skin or tissue damage to make your exchange difficult? I had a lumpectomy in June & didn't have clean margines. Now I'll have BMX on 12/30. My MO wasn't thrilled with the cancer cells left from lumpectomy so she wants radiation now after BMX.
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jbandkb1 - the radiation after MX wasn't too bad - skin got red, a few small blisters near the end, and the fatigue really builds up. But, all in all, not bad in terms of short-term side effects. Nothing compared to chemo.
Long-term side effects, however, have been very bad for my reconstruction. I developed significant scarring (called radiation fibrosis) that caused my skin to become thick, somewhat leathery. It also caused my pec muscle to start tightening up, which limited my shoulder motion and caused me issues. This didn't start showing up until about 9 months to a year or more post rads. This doesn't happen to everyone. I was part-way through reconstruction (had 2 fat graftings) before rads. I have now had 3 more surgeries to try and heal the tissue. It is slowly but gradually improving! My skin is still restricted in the lower pole, but my shoulder feels great! I have at least one more surgery to go (so that will make a total of 6).
I am too scarred for implants (high risk of capsular contracture and/or explantation), and am too afraid to do a flap surgery (I don't have enough belly for a DIEP, so it would have to be a lat flap or an SGAP - too scared of those). So, I am doing an unusual reconstruction method called fat grafting with an external expander device called Brava. It's a very long road with multiple surgeries, but I'm glad I have an option.
You didn't have radiation after your lumpectomy?
If you haven't had your BMX yet, you might actually get good margins on your BMX. If you do, you may not have to have radiation. I don't think you have any way of knowing right now if you need rads, especially since you have clean nodes. But maybe there is something I don't know that your MO knows.
I got two opinions on rads from radiation oncologists. The MO typically isn't the one to decide about radiation.
Hope this helps and doesn't freak you out!
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pch,
I didn't realize you had two things going on at once, and going for a BMX as well. Sending you a hug. Wish I could do it in person
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Jbandkb, so sorry to hear you will have to undergo rads following your BMX. I know I was just crushed after I finished chemo and then my BMX only to learn that I, too, needed rads. I am just a little ahead of you and will start in the next couple weeks. Sometimes I feel like this journey will never end...
pch, so unfair that you have so much to deal with! Hopefully the BMX will mean your can forgo rads and additional chemo? Can you have reconstruction done right away if you would like or will you need to do tissue expanders first? In my personal experience, the surgery itself wasn't bad. It's just those dang expanders that cause me pain. Oh well, it's not forever thankfully.
ABCdebi, I used Style Edit during the last month or so of chemo (I had 5 months of chemo) and then afterwards. I didn't have a ton of gray, just at my temples and on one side by my ear. The StyleEdit gave just enough camouflage for those areas.
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Oh, I almost forgot....My big news of the day....I was interviewed by a local TV news station today regarding cold capping. I returned to my local infusion center for the taping and even had to wear the cap again for the camera. I've never done anything like that before and I was pretty nervous. Hopefully, the segment will be edited well and the piece can be of inspiration to others. It was kind of funny in that the health expert who was conducting the interview assumed that I had finished chemo last year, not just 14 weeks ago, based on what my hair looked like today. The piece will air on ABC in the Minneapolis market on October 26th.
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Angiel,
That's awesome! Please provide us with a link to the video when they show it!
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That's awesome Angiel wish I could see it here in Australia but very unlikely.
Well I am now 10 weeks PFC still shedding slightly (not happy bout that 😡) and although my hair is very thin my head is covered and it is filling in nicely, I have 2 inch hairs growing all over my head so if I cut my long hair to my shoulders the new hair should catch up to that quicker and start to look thicker.....at least I f&@kin hope so!! I've wanted to cut my hair for a while but always chicken out in case I don't like it so at least I have a reason to do it now. Also having my last radiation today and now hopefully my life can go back to normal routine my house looks like a bombs hit it so now with more time on my hands I can get it organised.
Thinking of everyone going through treatment at the moment and cold capping hang in there and you will be on the other side before you know it.
Positive vibes coming from the other side of the world😘😘
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Hey, Aussie-girl,
My hair is thin, too, but I can run my hand through it and feel the little new hairs all throughout. It's kind of thrilling, actually, LOL. I don't think any of mine have hit 2" long, though. I'm 7 weeks PFC and still shedding as well. I wonder at what point it would be ok to start using a quality volumizing shampoo? I used one before my diagnosis and it definitely made a difference in making my hair look thicker.
How did your rads go? That's coming up next for me in about 10 days.
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Angie - that is awesome! Do you know if it will be on at 10:00 or an earlier newscast? How did they find you
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Wildflower Rads was a walk in the park compared to chemo. My skin is only slightly red (and I have pale skin) and it got a bit itchy mid way through but a ointment fixed that up although they did say to watch it for the next week or so as it could get worse so we will have to see. I've started using Nioxin shampoo and conditioner its for thinning hair I read about it on this thread I think it was Hortense that used it she started using it at 4 weeks PFC. I saw a friend of a friend at radiation she is 7 weeksPFC and although she was asked if she wanted to use the cold caps as her hosp was doing a trial in her pain med haze she opted not to and she has said that losing her hair was the hardest part in her journey and now at 7 weeks PFC even though her head is covered with hair it's only about 1- 1 1/2 inch I so couldn't do that I can only just do this hair I've got 😳😳 but a bad hair day is way better than a no hair day any day. Good luck with rads I'm sure you'll breeze through.
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Angiel - how exciting about the news segment! Please, do post a link when available.
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Angiel that awesome hope you can post a link.
Dancetrancer thanks for the info. I want to talk to my MO next time I see her. I want to throw the kitchen sink at this, but radiation was always up in the air. My PET scan was clean and I had my lumpectomy before chemo and didn't get clean margines. I would have assumed the mastectomy would take care of the margines after the lumpectomy. If I need radiation then I need it. It is what it is, but not sure why decided on radiation now before mastectomy. She said cancer cell can go dorminrnt with chemo so she doesn't want to take chances. Just need more answers
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Yeah jb most of the time MX can get clean margins - mine is the unusual case. Hoping you won't need it and am glad you will be asking your MO for more information.
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Ladies,
I'm in need of encouragement. I'm at 9 of 12 Taxol after having 4 AC. About 3 weeks ago my hair really started thinning. I have my bald spot along my center part where I got "freezer burn". I look like a dog with mange. I know I would have had more hair now if I hadn't gotten lice which I realized soon after starting Taxol.
When will hair start growing back after Taxol? I hear a lot of women say their hair starts growing back while on Taxol. I'm tired of hair falling out.
I see mention of taking Biotin. What dose? I'm taking 500 mg of silica as recommended by the woman who I rent the penguin cold caps from.
Yeah, I know. Only 3 more weeks, but I've been doing chemo since June 15 and I am so ready to be done.
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Hang in there Astrogoddess!!! My hair started growing back in during the Taxol portion - not all, but some. I'm 14 weeks PFC & I now have new growth anywhere from 2 to 5 inches mixed in with my long hair. I figure in a few months, I will cut it all down to thicken it up a bit. Anyway, you are SO close - you've got this!! The hair will continue to fall out even after you are done but you WILL make it!! As far as supplements, I took biotin daily but I also took the Phyto brand hair & nails supplement from sephora. I swear by it! I am still taking it. I had laser hair removal on my legs prior to my diagnosis. I hadn't shaved in years. Well my leg hair is back & thicker & growing faster than ever! And today while getting a mani/pedi, the tech (who didn't know my history) remarked that I had the strongest nails she's seen in a long time! I swear it's the supplements.
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Hi ladies, I'm 9 days since my first chemo round. I did my cold caps (although they didn't get as cold as -32C, they were usually in the -20sC). Now I'm just sort of waiting. I've noticed a bit more shedding than usual- maybe 10-20 hairs come out after one of my twice weekly washes. No scalp itchiness or pain. When will I know if the caps worked? All of my other body hair is still pretty tightly attached.
Also, did y'all take your hair supplements during chemo? I asked my MO about taking biotin during chemo and she said no. Geralyn from PCC recommended silica but I forgot to ask about that one. Did anyone take that one during as well? I'm using an all natural sulfate free shampoo and an all natural leave in conditioner.
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Tshire, the major shed usually comes anywhere from day 18 to day 24 following your first chemo. I took both biotin & silica during chemo.
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