Cold Caps Users Past and Present, to Save Hair
Comments
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meow, I am stage 1 or was but I recently had a scare. It turned out to be nothing but it got me thinking about chemo.
Originally my oncodx being 34 my mo wanted me to do chemo. I just couldn't do it, I just thought it is like taking poison. My hair came to mind, my finger nails, mouth sores, possible serious damage.
The scare made me think if it does come back i might have no choice if I want to live.
But so many people on bco do it without to much damage even keeping their hair. Throwing up also scares me.
I have only thrown up a couple times in the last 30 years, I guess I am afraid of it. Silly I know my mind is trying to get a handle on getting brave and doing the chemo if I have to. I pray I never have to face it.
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Meow, I'm not a big fan of throwing up either I think I hve twice in 30 yrs too!! I'll do ANYTHING to avoid it! But it's the unknown that is stressful w chemo but more stressful w cancer. I hve 3 kids to consider and just turned 43 during hospital stay after my surgery. I'm TN grade 3 so I can't mess around. I saw another onco dr in same office that was on call and he said that 4 cycles not 6 like my current onco Wants me to do wolud be ok. That shocked me so I'm considering it.
Is there a way that you'd consider doing a smaller cycle? Did they give you options? My drs at Stanford said 4-6 they want 6 but wolud let me do 4. It's a very personal decision but serious. Not trying to scare you , don't want anything to happen:)
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hi Meow, in Canada, for folks that are triple negative , I was told theywould normal consider the AC + T....I am not triple negative but I got a high oncotype score with grade 3, that's why I have chosen the same regiment.
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Scarysadday, I'm on taxotere and carboplatin bc I'm Braca 1 also. T is for TN , carbo for gene mutation.
T for you is taxotere?
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Hi All, this info may be in the thread but searching it would take time, so can anyone tell me if all of the brands of Cold Caps work well? I am currently considering Artic Cold Caps and Polar Cold Caps. Anyone have experience with those brands, have any negative feedback or advice? I'm starting chemo on Aug 18th.
Thanks very much! Stephanie
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Welcome to our community, Steph3977. Indeed there are lots of different results from the various brands. Looking forward to hearing feedback from others.
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Hi Steph3977, I'm currently using Artic Caps but just started so I can't give a full review but can say that even though they are cheaper they provide ALL the supplies needed except dry ice but they help w finding vendors. They give a tutorial and easy to contact. A couple of ladies had good success w them. I did not have enough time to use Penguin Caps bc they have yougo buy everything expect caps. But there are other women on this site that highly recommend them. Hope that helps
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Steph3977, I used Artic Cold caPS with great results. 2 other patients at my center are using them as well successfully. Let me know if you have any questions. Laurie
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I used ACC. Good result. Great costumer service. But it was hard job for my husband to strech frozen caps before puting them on me every 15 min. Also you have to make sure they are tight on your head and we used extra strap. The worst thing for me was tightness under my chin. I am Not sure it is the same with PCC.
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https://community.breastcancer.org/forum/6/topics/...
Steph, try reading the info at the top of this link
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Meow, nope, T for me is Taxol.....
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is everyone here doing radiation as well as chemo?
I had a consult today for it. I'm young, and she said the chance of me getting cancer from the radiAtion is about 5-10% on top of my own natural risk.
Ugh. I don't know what to do 😭😭
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I am going for radiation casting on Thursday:(
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I think I'm more scared of it than I am of chemo!
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victory- ugh. Why did you just remind me of that damn chin strap? I hated that thing! All my picks doing cold caps show me pulling on the strap!
I did radiation. I finish tomorrow. I think I did 37 treatments. It's a serious commitment but it significantly lowers your chances of a recurrence. At first I was going to do the kind that lasts 5 days and you go in twice a day but then after my surgery I had a lymph node full of cancer. It was as large as my original tumor. So then my world turned upside down like all of ya'lls did. My oncotype was only 22 but my dr felt positive it should be higher because the studies were based on menopausal women and I am (or was) premenopausal so the overall risk is increased. I worked all through chemo until after the 4th one when I had too many pain issues and was too anemic. I did manage to run a half marathon in between chemo 2 and 3. It was a great diversion. Not everyone will have the pain issues I had. Most won't.
I managed my chemo all by myself at home. It's doable if you get everything you'll need for the next week so you dont have to run errands. I never felt sick much but the bone pain from the Neulasta shot was beyond anything I've ever experienced. And I didn't have any pain meds and it was the weekend. I cried all night and all day because I hurt so bad. And I have to warn you the effects are cumulative. You'll sail through the first 2. I only did 4 cycles of TC. I was doing so well I offered to do 6 for extra insurance but my dr didn't think the risk was worth the benefit. She was right. After the 3rd one I Started a slow to heal peripheral neuropathy and muscle/tendon/joint pain everywhere. I went to work too soon after my 3rd chemo while my hands were still numb and I kept dropping syringes and drugs on the floor.
Oh dear. I hope I haven't scared anyone. You can do this! It does eventually end and you'll realize what a badass you are for being a survivor.
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Awww victory I'm sorry. I get where you're coming from except I'm staying away from parties 😜 You just feel like such a different person now. Not really a different person but more like your life is on a different wave length now. A whole new awareness that you hate exists. I want to go back to being unaware and clueless:( Today I stopped thinking about "it" for a little bit. Then I realized I had forgotten about "it" and was scared that I jinxed myself .
Just remember, Halloween is right around the corner!! Yay candy and pumpkins! Nothing better then a good holiday to cheer you up!:)
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meow13- I had zero stomach, throw up, taste, neuropathy, or any other side effects other then fatigue and sore joints. Especially back. Not one other side effect.
I was on 4 rounds of TC. Just started radiation today.
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what? Nothing? I got screwed on the chemo side effects!
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ooooooohhhhh waitttttt....one side effect, 30+ Effin pounds! Yeah, thanks chemo😡
Oops,AND Ankle swelling!
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Icandoallthings: 5-10% added cancer risk from radiation sounds like a lot. Then the risks of getting radiation caused cancer would be greater than the treatment reducing the risk of recurrent bc. My RO said 1/1000 long term risk of lung cancer.
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Icandoallthings, I'm not doing radiation they said it wouldn't help but doing chemo. Maybe bc I had bilateral mastectomy and nodes clear.
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Runner70, impressed w your strength! Your one tough cookie. I use to go to the gym 4-5x week but kinda afraid to give it my all bc were not suppose to get over heated. I did on alot of days start to just burn up.
I'm on taxotere and carboplatin and 1 dr says 6 cycles. My drs at Stanford say 4-6 cycles and warned me of the neuropathy and stop if/ when that happens. They'd like 6 but would be ok w 4. Another dr says to only do 4 cycles , that the rest are unnecessary. After reading your post Im wondering if I should stop at 4. My mother is having bad pain , numbness in her hands but had chemo 3 years ago. Why now? She's also diabetic.
I'm having a lot of shedding ,has anyone had a bad time w it? I'm spending a lot of time cleaning up the hair mess everywhere. Can a person lose all their hair after 1 infusion??
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hi ladies think I better get some toppik just in case. I feel alittle panicky. Can anyone recommend what to buy??? Where?
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Hi Meow0369 - I lost more than half of my hair during the first couple of months of chemo. It did start growing back during my weekly Taxols, but it's so thin and I have a bald spot on top so I'm using Toppik and wearing headbands when I go out. I don't know if you can find it in stores. I bought it online at Toppik.com Amazon has it too.
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I saw Toppik at Ulta, too.
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I will be starting Chemo on 8/25 and finally decided to CC to try to avoid permanent hair loss (due to taxotere). My hubby has been at a loss on how to help, so he took care of everything for getting my caps ordered and dry ice arranged and will be busy doing all the capping during my appointments. He also arranged a little getaway for us the weekend before chemo starts. Love him!
I think our support people go through so much with us, but really there is not much support for them. Anyone here doing something amazing for their support person to let them know how much they are appreciated?
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Hi Everyone. I'm new here. I've been lurking the last 2 months trying to get my head in a good (?) spot. You are all so inspiring - seemingly fabulous, funny and smart. And brave. Clearly I'm none of those things because my diagnosis was two months ago and I still just want to crawl under the bed with a bottle of wine.
I'm wondering if you might be able to help with a quick cold cap question. I'm starting chemo this Friday. Did any of you experience neck pain and/or nausea w/the caps?. I think I must be the biggest baby this side of the Rockies because the caps feel terribly heavy to me and I feel sick just practicing with 32 degree run of the mill freezer caps.
I'm really hoping to be successful at keeping my hair but my difficulty with the dry runs isn't too encouraging. I hope I can battle through this because it's a good distraction from the life and death scenarios that loom large in my brain each day. Kind of embarrassing how much time I'm spending worrying about hair, potential chemo weight, etc. Superficial, I know, but my meager attempt at some control when all control is lost, I guess.
Thank you! Best wishes to all of you that today is a good day and brings some joy and happiness.
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Hi BlackRockPB, Thankyou! Did you buy the spray or powder?
Willa216 welcome! No I did not hve nausea or neck pain, alittle chin pain. With all of this what worked for me was literally take one day at a time. Take care of yourself and prioritize. Let unimportant stuff go. You got this !!
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willa216; The caps are heavy. I was fortunate to get a bed every time I had infusions. With pillows propped up behind my head the weight didn´t bother me. I did however bring a neck pillow with me in case I would get a chair.
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Man I hate wash days!! My bald spot just gets bigger and bigger each time. I don't realize how much I am shedding between washes.I use Toppik every day so I don't see it until I wash which is about once a week, maybe twice. When my part first started to widen I freaked out, and wow what I would give for my part to look like that again! Ha! Thought I would share some pictures for those that are new. I think that I lost so much on top because for the first two treatments (TCx4) I did not use a strap under my chin, and I think it didn't get cold enough up on top. I'm really thinning on my sides now too. I also probably could be doing a better job of babying my hair. Toppik manages to cover everything but hopefully it doesn't get much worse than this. The first pic is the day of chemo#2 after I combed my hair after capping (a ton came out and my part went from normal to wide). Next two are after chemo 2 as well. The next ones are after chemo 3, pics showing the most hair loss are from today. I started shedding about 14 days after chemo 1 and soon started shedding very heavily. It has really slowed down now but it is still coming out. Nothing like that major shed though. I hope these pictures don't deter anyone thinking about capping. Despite my bald spot, I am very, very glad I decided to cold cap!! I just started medical school and every morning when I apply my Toppik I am so grateful that I still have hair and can look normal during school. Some people know what is going on but only if I tell them. And they always say "but you have your hair!". It is well worth it!!
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