Cold Caps Users Past and Present, to Save Hair
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amapola-yep only three hours sleep for me! Plus I'm suposed to fast today too and the steroids have made me ravenous! The people at the cancer center are all about thier drugs! They don't buy into the fasting thing at all and they are mostly all overweight and headed for some dread disease based on thier disconnect from diet.
The dietician came in is all worried about my weight loss (10 lbs) I weigh 150 now! I like my current weight. I still have fat reserves. They just can't get their heads wrapped around weight loss or fasting diets. She also said fasting would do noting to help breast cancer. She obviously needs to read up on it. It may not directly target breast cancer with the chemo but from what I read it actually does...At least my sources and dr longo say it does..but I do know it slows cell division and that alone lowers the side effects! I don't need chemo in my normal cells and would do anything to help keep it out! Plus studies also show it boosts immune system! how can that not help?
They have a huge disconnect with all their candy bowls and pastries they have sitting around the center. Man I'm irritated right now! Steroids may reduce side effects but my diet does too in a much better way. they are busy negating my diet! my diet is good for me ! steroids not good for me !
At any rate this was my fist Dose Dense Taxol. They are afraid of rejection first round. I may get them to back off on all this stuff like they did for me with AC.
Cheers sorry for the rant but ararraraaagh. roid rage
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My oncologist surgeon has a lot of published research and when i asked her about fasting she knew of the research, agreed it was worth a try. she is very evidenced based so this coming from her impressed me.
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My oncologist surgeon has a lot of published research and when i asked her about fasting she knew of the research, agreed it was worth a try. she is very evidenced based so this coming from her impressed me.
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hi catgirl, so sorry to hear about your shedding. I finished my 5th round of T/C last week one more to go. My 2nd round was good. Started getting harder at round 3. The fatigue was stronger for sure. The more u get the harder it will be on your body. As far as shedding I'm sure your shedding will slow. I'm at round 5 and my shedding slowed. Round 2was worse for shedding.
Pamela, your hair looks great. You can't even tell. I wish I had nice straight hair mine is curly and frizzy. Can't wait to straighten it again. But looks like you did a good job on capping.
Elastogelgirl, I saw the pic of you when you lifted the sides of your hair. Don't worry. It's normal. Mine is that way too. I left the sides and it's a lot of thinning. Not bald just thinner shorter hair. And I can only part my hair one way because the other side is a lot thinner and my scalp would probably show. Love all your pics
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elastogelgirl thanks for the tip. so maybe 4 caps should be enough?.....
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Elastogelgirl--First of all, I think that you and your husband are awesome! You are really working your program. The notion of driving over all those passes is daunting to me. I live in the Colorado Rockies part of the year, and know that the absolute uncertainty of what conditions could come your way is incredibly anxiety producing. My center's protocol is 50 mg of Benadryl, regardless of the person's weight. I weigh 101 lbs, so I spoke with my MO's nurse, and she immediately changed the order to 25 mg. Since I have had 2 of 12 weekly taxol tx without reaction, they will cut it to 12.5 mg next week. So, I know this is off cold cap topic, but I wanted to encourage you to talk to your MO about pre-Med concerns. Based on your photos, it looks like you still have LOTS of hair!
Pamela23--your photos look awesome! I echo the gal's thought's who said she thought it was a pre-treatment photo!
Luvmyys--I also think that it looks like you have retained a lot of hair. Think of how long it would have taken to grow that length. That said, I see no problem with a "plan b" for a wig, just in case you feel like you need it for a specific situation. My PCC rep said just to make sure that it was high quality and very breathable, as their issue is that the scalp could sweat.
I have just started this process, so my only report is woeful lack of being able to style my hair--it is naturally wavy/frizzy (I am a former hot blow dry/flat iron person, so I look a bit like a Chia Pet. No one at the office or my clients has said anything, but I've had a few "looks". Catgirl2--you are a little further along this process than I, so I've marked the calendar to see what happens shed-wise around day 19-21. Be careful about huge crowds, so maybe stay at home and miss the other performances?
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Had my radiation appt today to get marked to start at the end of next week. The lab tech confirmed my end date of chemo and looked at me oddly. Finally at the end of the appointment she asked "Is that a wig?" I said "no, I cold capped". She laughed and said "I was thinking that was the best looking wig I've ever seen!" Made my day!
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Pamela23--Awesome!!!!!!
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Thanks for sharing this information.
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Thanks everyone for posting your stories, hardships, photos and tips. I couldn't sleep and this was really a comforting place to come to before daylight. For newbies, I found this site very helpful: http://www.rapunzelproject.org/ColdCaps.aspx I'm following all the rules - Argon shampoo 3 days or more before chemo and no sooner than 3 days after, tight fitting capping via 3 straps 45 minutes before till 4 hours after, wide comb only with spray on conditioner, satin pillowcase, no head coverings, no styling (my hair feels wiry and lost it's sheen already - I sure miss using my 2" curling iron!).
My second dose of A/C was on 2/6, and by 2/9, my first big shed started. That's day 17. I don't know if I'd ever get a wig made of my own hair or not, but I can't bring myself to throw it out! I've probably got a lunchbag full of hair. I feel weird sharing this, but, other people's sharing has helped me so much I thought I'd put it out there. My hair is coming out 10-20 strands at a time...(it is probably 10" long).
Without all of you, I don't know how I'd have pulled through this emotionally. Cold Capping takes a lot of effort and I'm really calling in on my friends to help. It'd be so much harder to cope with the process and with the big shed, if not for all of you sharing your pictures and stories.
Maybe they were being conservative, but Arctic Cold Caps said my A/C T regimen is one of the most difficult, and that "I'd know" by the end of this month if capping was working. So the next chemo on 2/20 will be an act of faith...
I looked back about a dozen pages and couldn't find anything - did anyone's actual hair follicles hurt and then itch?!?
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Dandilion--my big shed was on day 19. I, too, have kept a half gallon baggie full of hair. Just to gauge how much I lost. Hang in there!! We are here for you!!
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Dear all, today is the first anniversary of my mastectomy surgery (right breast). I remember vividly lying in hospital bed and crying the whole 2 days I spent there, thinking how am I going to get through this ordeal. I'm not a strong person after all. I had 6 cycles of TCHP afterwards and used Penguin cold caps. I lost 70% of my hair mostly starting with the last cycle and long after chemo. It was a very stressful time. Somehow I got through it, and finished chemo in Jul, had my reconstructive surgery in Sept. I have 2 more rounds of Herceptin left. My heart goes out to all the ladies who have gone through this process and everyone who's starting or is going through this difficult times. Although I had less than desiresble results with cold caps, but I don't regret it and it's worth the efforts. I started coloring my hair 5 weeks post chemo, and got some highlights 2 weeks ago. I trim and color my hair every 4-5 weeks
I'm going to post pics: 1- pre BC 2- before getting a very short haircut in Sep 3- today, 8 months after chemo.
Wishing everyone much health and peac of mind.
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Catgirl - Sorry about the shedding hope it slows down. By the experience of others it sounds like you'll do great.
Hopful - Hope you don't have too much shedding. Not styling is very hard. Mine is also frizzy and dry. I've lost a lot because I was on AC but done now.. 11 days PFC, yahoo!
Pamela - that is awesome. I bet it made your day. It's nice to be able to go forward with treatment and not stress about the "hair".. You do look great post-chemo!
Dandelion - Sorry you are going through this. Keep us posted on your treatment and always come here with questions. Always good answers here and definitely a support.
KD2016 - Congratuations with getting through all this. I am so excite to see your pictures. A short hair cutis on my horizon. Just have to wait until shedding stops. Thank you for posting again.
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KD2016 - Wow you have a ton of hair now and it looks great! My hair looks like your pre-cut photo. How long after chemo was done did wait to cut it and did you have additional shedding? You look great!! Thank you for posting!
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Thank you luvmyys - i trimmed it first 5 weeks after chemo, and I cut it very short 11 weeks post chemo, and started styling it very carefully, blow dryer on almost cold setting and actually continued to wash it in the sink and cold water until the shedding stopped. Still had shedding after the cutuntil it gradually stoped. I'm still washing my hair only every 3-4 days and take Viviscal supplements for hair growth.
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how long did it take post chemo for hair re growth?sorry if this has been asked before. i imagine it is different for every individual..ty
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To be honest don't remember. It seemed like a long time for me. As you said everyone's different. My hair used to grow like crazy before BC, but it's slower now.
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I don't remember but it seemed a long time for me since my shedding was primarily post chemo. As you said everyone is different. My hair for sure is not back to the pre chemo growth rate yet
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DandilionWishes, hurting and itchy scalp is a classic pre-shed experience it seems. I remember it felt like heaven to scratch, but it was all kinds of wrong. Pretty sure scratching accelerated my shedding. I only remember experiencing those sensations before the BS. Subsequent shedding was less dramatic.
Kae, i'm 15 weeks PFC and my regrowth ranges in length from about 1/4" to 2.5", all mixed in together with hair that held on through chemo. Average hair growth is 1/2" per month (although Herceptin slows that a bit for some people, it seems). Three full months PFC and some of my regrowth is longer than 1.5", so i believe some of the hair that fell during the first BC began to grow back immediately.
I found i no longer needed Toppik to cover my scalp at the top around maybe 5 weeks PFC. Then on Christmas day, 8 weeks PFC i first noticed obvious extreme-mullet-like regrowth. Brushing my hair flat, the short new hairs stand straight up. Still does. It's a party trick. I showed the rads nurses just yesterday!
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hi all,
I know this is not a cold cap subject but you guys are my group!
So I did my first dose dense taxol Thursday. My stomach and spirits are fine. But, Now I'm getting excruciating hand and foot swelling and pain. Can't wear shoes except flip flops. Is this hand and foot syndrome or will the swelling pain get better after a few days? Feels like feet got burned. Even walking on carpet hurts.
I'm also having my worst reaction to neulasta so far....all over pain! My hubby tried to hug me and I was all 'Watch out it hurts' feels like dengue fever I had years ago..It can cause feet and hands to peel though it just made my skin hurt.
Advice? Hope?
I tried to ice my hand and feet during infusion but the pre meds made me jumpy like Restless legs. Was unable to relax enogh to tolerate the icing.
I do hope this is not going to interfere with my current dose dense taxol program.
Hugs e
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I'm four weeks out from my final chemo and my hair is shedding at an alarming rate. I didn't experience very much shedding at all for the first 4 rounds of chemo. I shed quite a bit after #5 and now huge amounts after #6. Does anyone know when the shedding will stop? Any vitamins or other potions that can help the shedding stop?
DX - June 2016 - 2.2cm tumor; Stage IIA, Grade 2, ER+, PR+, Her2+
Surgery: August 2016 - Double Mastectomy
Chemo - 6 sessions - started Sept. 2016
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sorry elasto that the chemo was so hard for you. is the sensation of burning considered a neuropathic symptom? the restless leg from benadryl sounds miserable. my bedtime rls has gotten much worse since chemo, am taking a 1/2 percocet at bedtime until i can get in to see myprimary or neurologist about it. can you take a percocet during chemo or some other opioid next time? opioids often do the trick for rls.
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I think my shedding has slowed down a little since my BS after my round 2, but it's still going. I can tell my hair is thin, but luckily I had a ton of hair. I'm worried it won't make it for two more rounds. I have two full sandwich bags of hair! The worst part is that it looks dry and lifeless. Is there any kind of oil or treatment that some of you feel is safe to give hair a little shine? I'm tempted to get a wig to wear when I go out on the town, but I'm afraid I'll do more damage. This is all so stressful!
Elasto, I hope your swelling goes away and you feel better. You are having a rough go with all of this crap. I haven't been getting neulasta, I just know the SE from that can be bad. I just take Cipro from day 5-12, but my chemo is different than yours. Please keep up posted on how you're doing!
Ladies, I hope you all have a great week!
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hi all,
may i know what you took/take during chemo with TCHp. just read not to take anti oxidant? so no vita E and turmeric? i take those 2 plus vit b 6,iron,ca,mg,zinc and vit d. plan to take l glutamine also. sorry if this has been discussed before!ty
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catgirl - glad the shedding has slowed down. I think some have put hemp oil on for shine. This is such a stressful time but I'm sure no one notices the thinning but you. I got one of those hats with the hair attached. It's a prefect match to my hair color and feels nice to have a full head of hair on my head BUT it's synthetic and very shiny so people would totally know it's a wig. Just don't know if I'm ready for that yet. Hang on, your doing great!
kae - It's best to ask your doctor if any of those supplements are ok to take during chemo. I was approved for a multi-vitamin, that's it. My chemo was AC so more harsh. During my Taxol the doctor told me to take a super B and ALA. Now since I am done with chemo I've added a vitamin D and calcium the hormonal therapy does effect bone density and Viviscal for hair growth. Have you started yet? Did you find your caps?
I am 2 weeks PFC.. feeling really good, pretty normal. Only thing holding me back from resuming normal go, go, go routine is my HAIR! I'll get through it and find a resolution soon. I can't let it hold me back much longer.0 -
Janetsam-I took Percocet. Wow I slept! First time in months. My Onc did not prescribe this i had it stashed for emergency use..now I want to ask for it but I'm afraid to have him think I'm a drug seeker..live been doing so well until now. I think pain killers harder to get these days. Percalone is actually what it was Helped me tremendously! My belated brother in law had it for his bad case 10 year battle with prostate cancer.
So my latest chemo First dose dense taxol was horrible. Was all jumpy during infusion with steroid and benedryl overload. Made time go slow and capping was less tolerable.
.next day I Started with face hot red swollen then by midnight the hand feet red swollen, like burning on fire. Skin all over hurts Lasted two days. Plus all over body pain like neulasta but worse I did get my neulasta on day two so it's in there too. I have been doing my Claritin. I have a worsening rash with swollen skin on my legs and arms! This has been there a little bitall along but now it's getting huge!
They really loaded me up with dexamethasone this time with my first dose dense taxol...I'm beginning to think I'm having reaction from dexamethasone. I've eliminated all the other things in my diet and Rx list...narrowing it down..
I'm not sure my Onc will buy into it. But I've been on reduced steroids prior to this until This first taxol and now I'm really blowing up!
Sorry I know this is not a cold cap thing but I think this site is kinda hard to use for odd subjects. Cold capers are the most do it yourself and 'in the know'. Feel free to private message me so we don't fill this up with my rash thing.
Hugs e
The rash is worse than this photo. My skin I leathery thick edges around the red areas
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