Cold Caps Users Past and Present, to Save Hair
Comments
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deemendoza - PFC is "post final chemo". There are no dumb questions here!
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Pamela - my dermatologist estimated I lost about 70% of my hair😢. It was all over thinning, and no bald spot.
I'm probably at about 40-45%of my normal hair now.
I don't have a new pic, but as soon as I take one, i'Ilbe happy to share before and current pics.
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Meow: Good to hear from you. I got my therapist referral from the primary care physician at my oncology center. I'm sorry to hear you're having anxiety and can't sleep. I'm the same way. I wanted to say that I think it's important to get a therapist who deals a lot with cancer patients. I'm waiting to get into the one my PCP recommended and in the meantime am seeing someone I was working with previously. It would take a long time to articulately explain the issue, but the upshot is my current therapist doesn't specifically work with cancer patients and the way she mirrors me is just fueling my anxiety, if that makes any sense. Anyway, I sure hope you find somebody who's a good fit for you and helps you become more calm. This is hard. XO. On Madison Reed, the aluminum is listed on the back of the compact and on the outer box. I got medium brown. I should have bought the dark brown and went back to the website to see if by chance aluminum isn't in the dark brown. I noticed the ingredients online are not the same as on product itself (at least for the medium brown). Weird. Maybe they reformulated and I have old product or I have new product and the website is old. But if you only need to use it for a couple weeks then it might be fine! It really did make my hair look better (although I got the wrong color). It's kind of tacky - powdery - feeling, however I would take that in a heartbeat over my horrific roots. So happy you're almost at 12 weeks and can do something nice for your hair. Take good care of yourself, Meow.
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KD: So glad your hair is filling in nicely. It must be fantastic to feel like the worst hair days are behind you.
Would you mind if I ask what specific brand of color your colorist used? My stylist seems a bit flummoxed about what to do with me, which isn't exactly comforting. Did you use the same color at 4 weeks that you used later on? I'm afraid of losing more hair by coloring earlier than 12 weeks but I can hardly stand it. I think I'm down to 50% of my hair but I have dark hair and the roots are horrific, so honestly I think it looks much worse. I didn't realize how much gray I have - I was either in la -la land or this whole lovely cancer experience has really brought on the aging.
I'm feeling a little desperate because I have to go back to work in a week or two. On Thanksgiving I took some pretty serious pains to look good ( I mean I stuck with the head- on- fire itchiness of Madison Reed for the whole day!) But I think I must look even worse than I thought because nobody said anything like "wow, you still have some hair" or anything remotely positive. Actually I sat and cried when we got home. I just don't recognize myself at all. Not that I think I was so fantastic before but the difference between before and after is just crazy. I'm trying to remember that others who have gone before me have felt a bit more like themselves as time goes by.
Thanks for letting me know you did well with botox and fillers. I wish I could do those but I tend to have bad allergic reactions to so many things. I'm definitely still considering though. So glad they helped you.
Good thoughts your way, as always.
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3mily - I think your hair looks great. Thanks for posting your pic. I would never, ever guess there was anything going on with you!
Hanging in - thinking of you. How did it go today?
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Hanging_in_there, I hope your first chemo went well yesterday. You seem to have a really great attitude.
I have to second Tunegrrl's recommendation of using a moist heating pad while cold capping. It's made a really big difference, has kept me so warm. I got the standard/large and it fits nicely in my lap and hangs down to protect my legs.
https://www.amazon.com/gp/product/B000FJ9VHO/ref=oh_aui_detailpage_o04_s00?ie=UTF8&th=1
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Willa - I don't knowwhat brand of color my colorist uses on me now, but I can ask her next time I see her in Dec. Sorry about that. She's been using it on other ppl, and is using it on me since I went back to coloring my hair after chemo. I will continue using it going forward since it has no ammonia and no other chemical in it. She did a lot of research after I told her I did cold cap and have to treat my hair differently.
I really understand how you feel. I still don't feel/look like my old self. We just have to be patient with ourselves and take it day by day. Hugs.
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Pamela- I did a total of 4 TC's. I bet I lost 40-50% of my hair, mostly on top in the back. It was a great look! I didn't realize I lost hair along the side of my hairline until it started growing back. It's pretty funny because it's so curly. At least it's growing back! I didn't use PCC so you may not have the awesome bald spot I had. My friends named it my Kentucky Waterfall. Lol. Are you doing chemo because you had a grade 3 tumor? You didn't have positive nodes. I'm just curious. My lymph node status was the only reason I had to do it. Sucks.
I offered to do 6 treatments because I wanted to give this my best shot but my neuropathy started to become a problem and I was advised that any extra benefit wasn't worth the risk. Honestly, I'm not sure I had it in me to do 2 more. The 4th one really did me in and I would have had to stop working completely for the remainder of treatment and probably get at least one blood transfusion if I continued. I really hope I don't regret 4 versus 6 someday.
Soooo....why do people feel the need to tell me about a relative, friend, etc they knew that had breast cancer? Especially when said person DIED of breast cancer! Is that supposed to make me feel better? I have this generic smile as a response and "I'm sorry". I leave out the "Im sorry you are so insensitive that you would give me an example of a bad outcome when I'm already scared to death..." ugh.
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Runner70--On paper a stage 1, only 5mm with neg nodes sounds great but it was a Grade 3 (highly aggressive, just caught early) and the Ki-67 came back moderately high so I agreed to the Oncotye Dx testing. My score was 28. This chemo is suppose to be more "insurance" incase there were any cancer cells that went rogue through a blood vessel. I don't want to have distant recurrence 10 years down the road. My score correlated to an 18% chance of distant recurrence and I could decrease my chances by 30% down to 12%, if I chose chemo. They actually gave me the choice. I NEVER want to hear the word cancer again so I'm doing this now while I'm younger and stronger.
I agree with you, everyone knows someone who went through it and I could pass on those stories that don't end well!
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Willa- I'm pretty certain I did highlights at 12 weeks PFC and my hair survived. I cheated and got a trim when it was still falling out, too. I just warned her to be careful combing it. The look on her face when she accidentally pulled out a bunch of hair was well worth losing those strands! I will add that when I got the highlights, the shedding had settled down to normal.
Sorry your family didn't say anything about your hair. We never know what people have going on in their minds about us. Maybe you look so normal that they didn't notice you look normal. Believe it or not, people forget we have cancer. Or maybe they did notice you looked nice but were worried they would embarrass you if they drew attention to you. Most of the time I think people aren't thinking about me near as much as I think they are. I remember going to an NBA playoff game 3 days after my last chemo. I was swollen the size of a blimp and couldn't even fit into my loosest yoga pants so I wore a dress so my stomach could have free reign underneath. And I was certain the people sitting behind me would see the blinding white scalp that showed because I had a bald spot the size of my palm back there and laugh at me the whole game. I had prepared what I was going to say but you know what? Nobody laughed. And I decided I didn't care if they did anyway. I've been through too much to let someone else's opinion hurt my feelings. Family is different, I know. But it's family that tends to disappoint us the most. My guess is that you looked nice and they noticed and didn't say anything because you having cancer is still painful to discuss. Why don't we just go with that
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haha. The funniest thing, Willa. You kept talking about Madison Reed and I had no idea what you were talking about. I was getting Madison Reed confused with that "escort service", Ashley Madison, that was in the news so much! I think I need to call it a day.
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SO today I washed my hair and as I was shampooing, my fingers hit what almost felt like a couple scabs at the base of my part. After combing out my hair, I took the mirror and saw huge white flakes as I rubbed my fingers over the spots. I'm wondering if my cold cap froze my scalp too much and damaged my skin there. Anyone else experience this?
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hi everyone. I've only had 1 infusion and so far no major noticeable shedding. But I'm going in fir my 2nd infusion Thursday. I'm nervous for the big shed. Hopefully i will be one if the lucky ones and won't have the big shed. Fingers crossed. I've been doing good with babying my hair. I wash it 1-2 a week and let it air dry and I comb I think only once a day. BUt I have short hair neck length. Hope everyone had a good thanksgiving.
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Pamela, lots of us experienced the white flakes at times. I don't think it's from the cold - it's more likely "gunk" produced by the scalp because of less frequent washing than usual. Some people have had success mixing apple cider vinegar in their rinse water; I just sort of worked the white flakes out gently with my hands and comb. Eventually your hair/scalp will get used to less frequent washing, and the white flake problem goes away. At least that's what happened for me.
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Hello Ladies -
I am getting my last AC on Thursday. I am nervous I will get sick during my treatment because of the smell of the Penguin Cold Caps. I am nauseous just thinking about it. Well, I am nauseous most of the time. 3mily mentioned if you had trouble with morning sickness, you may have issues with nausea during treatment. I was that strange 1% who threw up all day everyday all 9 months of both pregnancies. So it's true for me. Strange too, I crave the same foods I craved during pregnancy, anyone else have problems drinking water? Just tastes terrible. Anyone find a solution?
Welcome Hang in there - sorry you're in this club, hope your first treatment went ok.
Willa - I totally understand when nothing is mentioned when we try and doll ourselves up. Recently we went to dinner with my parents and sisters. I really tried to look normal. One sister couldn't look at me, she just sat and cried during dinner,(I didn't look that bad) my brother in laws first words to me were "why do you have hair?".. Today I saw my dermatologist and he said "you look really good".. figuring he wouldn't say anything or say "hey here's my plan for you when you're done". He shocked me. You would think people would have a desire to make us feel better while going through this horrible situation. I think most don't know what to say. I can remember when my sister in law went through this... I don't think I ever said anything. Up until my diagnosis I have never talked to her about it or how she was feeling during her treatment. They don't live close so I wasn't around but gosh feel horrible now I didn't reach out more. I think most people have no idea what to do unless they've been through it. Both my brothers I haven't even heard from since I told them 4 months ago. I wonder at times if people behave this way because they don't know if I'll make it, or the opposite, this is common and they are just giving us privacy to make it to the other side.
Hope all have a good evening..0 -
Runner: You made me laugh! Ashley Madison would definitely be a diversion from cancer.
You are so right on about my Thanksgiving upset. Thank you. What you said is perfect. Our minds are crazy unhelpful at times. If those people at the NBA playoff were thinking anything it was prob that you looked beautiful in your dress! I felt self-conscious (read self-absorbed
) and almost nervous to see people again at Thanksgiving because I hadn't seen them in so long. I felt fragile like I just woke up from a coma or something - I didn't socialize during chemo since I was so sick. In hindsight I was disappointed people didn't acknowledge what I have been through , although I'm embarrassed to admit that. You're right, family does seem to disappoint the most. Only one person on that side of the family reached out after my diagnosis or during chemo , which I guess I'm still surprised about. Having cancer certainly offers an opportunity to study human nature. It's interesting to see what people do with the news. Some have backed away while others have been supportive and loving. I'm working on being more open-hearted about the reasons why some people just can't deal. At the same time I'll be forever grateful to those who have kept me close. I, too, have had lots of conversations where people say the craziest things and their stories end up with somebody being dead! I think people are just trying hard to say something to relate to us but often they are scared and don't think about where the story is going until it's too late.
On a positive note, I went to my first of nine Herceptin-only infusions yesterday. The nurses asked if I wanted to go into the private (capping) room again but I stayed out in the community area. It was actually almost pleasant. Everyone was chatty and offered to share their snacks. Kind of sweet - like kindergarten rest time. And no heavy-as-hell icepacks on the head. So for all you Her2 ladies, infusion gets better!
Oh, I'm 3.5 weeks PFC and I have to say some of my hair seemed down right bouncy this morning.
Hang in there everyone.
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SO, just realized that I wasn't logged in and lost my last post
Willa~
My hair is growing back in pretty well, I have tons of hairs that are about 2.5-3 inches long. I decided to get an 'undercut' of sorts since I lost the majority of hair at my sideburns and over my ears. I had my stylist shave the sides and it looks pretty rad IMHO. kinda punk. The clumps of short sticky up hairs are manageable if I wear my hair sorta up on the sides, showing off my shaved areas. I get tons of compliments, especially from 20 somethings
the rest of my hair is almost shoulder length. for context, its been over 15 years since have not had long hair.As for the shots... the actual shot is pretty intense but doable. I started at the end of OCT. and started the arimidex mid NOV. My hot flashes started about mid november and are pretty crazy. as far as emotional stuff, I just have a lower tolerance for mental overwhelm. i use to be able to hold so much more in my head and organize better, now I definitely have to write things down and adjust to a new normal for mental capability, which is pretty tough for me. I also get mild headaches more often. The hot flashes are kinda crazy, I wake at 1, 4, and 5 am with wacko heat. I have been using an essential oil spray that has rosemary and peppermint, which helps me cool down and focus. I also just started a chinese tincture made for hot flashes tonight, I'll let you know how I do. As far as I can tell, there are no phytoestrogens in it.
overall, the shots/pills aren't so bad, I am a little bit more achy overall and get stiff easier. I am 42 for reference.
let me know if you have any specific questions!
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Pamela: I second what PatinMN says about the flakes in that I think they're common and not frostbite. I still have them but notice that the situation seems better as I move away from chemo. They're so pretty. I don't think it's anything to worry about, really. My onc did say it's important to keep washing your hair (ie don't wait longer than we're supposed to wait because otherwise all that build up stays on the scalp and makes it unhappy (ier)). Hope that helps a little.
Luvmyys: Boy, what a dinner you had. Sorry! I don't know what is going on in peoples' heads but I'm glad you saw your derm for a little positivity! I do tend to agree with everything you said about why people do what they do. I guess my one complaint is that I still so wish that if nothing else people would acknowledge our situation and just say they are sorry and that they care. That's all. The worst is the silence. I, too, am definitely going to be extra careful moving forward that I never shy away from saying something supportive when somebody's having a rough time just because it's hard to find the right words or I feel uncomfortable. Lastly, got to give it to your brother in law for noticing your hair!
I want to tell you that I actually did throw up during infusion (before the cannabis spray) but I lived through it. Please don't worry about this too much because it will just make everything worse! On the plus side once you get sick with the cap on the capping can't get too much worse... You're almost done and you can do this! On the nausea/water question - I tried everything. What finally worked a little at the end was a LOT of lime in sparkling water and really strong peppermint tea. Did your onc mention trying dramamine? I hope you get some relief. Sorry. Unrelenting nausea is the worst.
Hopfull2: Good luck tomorrow! Glad you're doing so well so far.
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I get the double take with all my hair. I have a great amount of respect for the people who just come out and ask me why I have hair. They are fascinated when I tell them about cold capping. Sounds like voodoo witchcraft.
The 2 things that scared me the most about chemo was losing my hair and going into menopause. Found out today neither happened after all. I saw my gyn today and based on an u/s I got yesterday and my exam today, my ovaries woke up from the dead and started working again, I just didn't know it because the tamoxifen is keeping me from having a period and it's giving me hot flashes. I was so upset that maybe the Lupron suppression shots during chemo didn't work after all but apparently I have ovaries of steel. The odds were not in my favor. Now everyone is scrambling to warn me not to get pregnant. It's kinda nice hear that. I'm getting labs done Thursday so I'm really curious what my estradiol level is now. 3 months ago it was zilch!
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Thankyou ladies for your responses on the hair color. I really appreciate it.
Willa, Thankyou so muchon your advice for a therapist. I want to feel comfortable and have a connection with the person I'm going to open up to. We are already in a vulnerable state. I feel like I just need help organizing my anger, pain , regret, fears and hope. I wish I had a job since I was planning going back to school bf all this happen. I would have a distraction and routine. My 3 kids keep me busy and I love being a mom. I'm just lost I guess. Trying to find a new normal. I use to be a gym rat and now I don't have enjoyment with that anymore. It's all small in the scope of things now. Then I get pissed off that this is holding me back which in turn caused regret and stress. I do have good days where I laugh a lot but the anxiety at nite comes. But then with the darkness of nite begins a new dawn of light. With another day.
Being around family/ people, Yeah I notice I'm the elephant in the room too. It's why I didn't make an announcement and didn't want the disappointment. Sometimes all we need is acknowledgement or just a hug. Not a big fuss.
Luvmyys, On the nausea I even tried wearing a mask and putting Vaseline by my nostrils. Anything not to smell that dn dry ice cap smell.
Pamela, I lost over 80% of hair and have a mullet going on. If I can bare taking a pic soon I'll send one to you. I have grade 3 too. I did 4 in fusions but did not get the oncotype test. They only told me aggressive and high reoccurrence. " To clean house" as they said. I had two tumors on left side 2mm and 4 mm. Even though I didn't meet guidlines they recommended chemo 4-6 cycles. If I had nueropthy to stop. I had severe leg pain and practically needed a a wheelchair to finish the last infusion. Did you have micro invasion?
Sarahrae, please let us know if it works! I'm 43 hormonal and need some sleep!:)
Hugs to all!
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Runner70, congrats! That's great news! Love to read that stuff on here!
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Runner- Wow, wonderful news about your fertility! So happy for you. You must be thrilled! The body is remarkably resilient, isn't it?
Sarahrae - You haircut sounds fab - I can't imagine being cool enough to pull that off! Glad you found a style that makes you feel great since I know you've struggled on the hair front. It sounds like it's growing really well, too!
I appreciate you taking the time to relay your experience with Lupron/Arimidex. I suppose we just do what we have to do but it sounds challenging to me...Sorry you're going through it. I'm nervous. Right now I'm not sure if I'm going to need to do that protocol or Tamoxifen with baby aspirin. I have a blood clotting disorder so initially Tamoxifen was off the table. My first oncologist suggested Lupron/Arimidex but then I changed oncs and the current one says it would be better to do Tamoxifen with baby aspirin. I'd likely switch in 6 months or a year to Arimidex. I always find it disconcerting that there isn't one surefire way to go with all this treatment. I realize oncology (and I guess much of medicine) is a combo of science and art but it would be nice to feel something was definite! All these options have made me second guess my treatment choices along the way, even though I know it's better not to do that. ...
I hope your tincture works for the hot flashes. I'd love to hear how it goes for you. I do acupuncture and am open to all sorts of alternative stuff. As far as phytoestrogens - did anyone tell you not to use skin lotions with phytoestrogens (red clover, pomegranate, soy, etc). Most "clean" products are plant- based and many of those plants seem to be estrogenic. A person could go a little nuts trying to do everything right... Anyway, thanks again for all your info.
Meow - I wish you well in finding a therapist. You sound clear-headed and calm, actually, even though I do understand about the anger, fear, regret, etc. So glad you're having some joy. I love what you said about the darkness each night and how that moves into the light of each day. I feel the same way - it's almost a visceral pattern - despair and hope; despair and hope.
Holding good thoughts for everyone.
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Hi Everyone,
I am getting ready for my third TC treatment next week. It is comforting knowing I am not the only one going through this journey. Thanksgiving was a tad stressful as felt like everyone was looking at me...and not be able to wash my hair stresses me more than it should:). I know people are trying to be helpful...but hearing you look tired or looking at you sad..sucks....when you are just trying to go about life as normal.
While I have had some major shedding it seems to be slowing down, top is thinner. I am 36 days into this chemo journey with 2 more treatments left. Would love some advice on what to expect around 3?
I am a little worried that I am using L'Oreal Root Cover Up as it is the only thing that seems to cover my grey hair. Has anyone else used this product? I have tried Madison Reed, Bumble and Bumble and Wow root stuff but honestly does seem to hide the grey. I just hope I am not doing any major damage. I have always had strong hair so I am not the best rule follower. That said I have been washing once a week and sleeping on satin pillow. While I have not blow dried my hair...I have used Velcro rollers. Just ordered foam as thinking they will be a bit gentler. I have always been a little crazy with my hair...I get my roots dyed every 3 weeks...so the thought of waiting 3 months is overwhelming...but know how hard I am and friends are working to save my hair.
Here is a photo from yesterday.. sorry for messy desk.
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I am reporting back on my first Chemo and Cold Cap. I posted in the December Chemo Group.
https://community.breastcancer.org/forum/69/topics...
It is halfway down the page. I'm cutting and pasting it here, since I don't know how well the link works.
I'm back to report from my first chemo session.
I got my port on Monday Nov 21, it was a bigger deal than I expected. I'm so anxious I can only read a little about breast cancer and everything related. I take in a bit by bit. My sedation was called "twilight", but it seemed like "afternoon" to me since I was hearing all nurse and doctor conversation and even asked some questions (before the surgery).
I ordered a Penguin Cold Cap to preserve my hair. My husband practiced for a couple of hours Sunday night 11/27 for my first chemo, Mon Nov 28.
So the chemo wasn't that bad. I had A/C and it was done in about 2 hours. I arrived with really high blood pressure (no surprise there, so they let me calm down for awhile so I could get my BP to normal. I started to cry when they started clearing the port with saline solution because all of a sudden it became real. But the actual chemo lasted about 2 hours.
***** Beginning cold cap discussion, skip if you are not interested ****
But because I'm trying to preserve my hair, the process with the Penguin Cold caps was brutal. It was much longer than the video suggested, because they give you your own schedule based on age/ hair type/ chemo regimen and I'm not all sure I answered a lot of questions. The caps are stored in dry ice and get to your head at -29 to -31 degrees Centigrade. You have to protect your forehead and ears from frost bite, which we need to do a little better next time.
In case anyone is interested. I'm going to outline what it was for me and the cold caps.
9:00 pickup dry ice from beer/wine store (they knew I was coming and had preordered 45 lbs)
9:10 Start driving to medical center.
9:20 stop on highway side to put in first cold cap in cooler per instructions
9:40 arrived medical center, put in second cold cap in cooler
10:00 waiting room, put in third cold cap in cooler
10:10 put on first cold cap in the weighing area of the oncology center, since the timing is specific.
(Chemo was supposed to start at 11:00, but actually started at 11:30)
My husband changed the caps every 20 minutes for the first 3 and then every 25 minutes until 7:45 pm
So I had a 4.5 lb cold cap on my head from 10:10 am until 7:45 pm
My husband was in a constant rush to a) get proper next cold cap from cooler and check temps b) remove old cold cap c) put on new cold cap with all the extras because I have thick hair d) put away old cold cap in the cooler in the proper order. So he had about 10-15 minutes to rest before the next cycle and this went on for 9.5 hours. We left medical center and were home by 3:00 pm, but had to continue the cold caps until 7:45. A friend babysitting my son helped with the cold caps at home.
I'm committed now but didn't realize the extent of this. There was one page in the 50 pages they sent me that said the temps (this was not a surprise) but the fact I had to do 5 hours of post chemo cold caps (surprise). And I didn't read that page until the day before when we were practicing. We were out of town during the cold cap delivery so a friend received them and put in our fridge. One thing is Penguin doesn't send you the schedule or all the literature until you buy. Or not until I bought (rented).
It was brutal because it seemed like only 10 minutes between changes, but I guess it was 25 minutes. I couldn't put on my glasses and I'm pretty blind without them. I jerry rigged an old pair and taped them on with surgical tape, which was sort of like the rear view mirror on your car "Things are closer than they appear". Couldn't play with iPad or watch TV due to issue with vision. I listened to books on tape through some very big head phones I keep for airplanes.
The weigh on my head for 9 hours hurt my back, will need a back support next time. I had a sleeping bag over me and a blanket around my shoulder and was still shaking some of the time, but I'm not sure it was from the cold, I think the whole process was pretty difficult to deal with.
***** end of cold cap discussion.
Day 1 (Chemo) when I got home, I was tired and a dizzy on my feet, so used a cane to get around. I was surprisingly hungry at night. I didn't eat much during the day, even though I brought lots of food. I drank plenty of water.
Day 2 I was mostly fine, but didn't sleep well the night before and took it easy. Drank plenty of water, started to feel not so good at 8:30 pm so laid in bed until it was time to go to sleep, and didn't sleep well (this is ongoing) I felt a little sick in the middle of night (no puking), just not great.
Day 3 (today) is supposed to be a bad day, but I'm not having a bad day. Drove for the first time today, need to get a shoulder belt fuzzy thing to protect my port.
Edited to add Day 4 -- this is supposed to be a bad day, and it is. I am tired, a little queasy (not puking). I did get out for a walk today (first since chemo) . I went with a friend, took a cane (that I already owned due to ACL surgery years ago) because I was not that stable on my feet and I had to walk much slower. But it was a beautiful day, I know that exercising will be good for me. Back in bed and resting. And for the cold caps, I was able to wash my hair for the first time in a week, but I have to be gentle, wash in sink, use little soap and no blow drying. I bought a silk scarf to wear on my head in the cold (Cold Caps doesn't want your head to get hot).
*******
Thank you to all the ladies for all the updates. Cancer feels very lonely otherwise. I'm amazed at all the research Myth has done, and hope to be able to research even 1/2 as much. I'm trying to keep my anxiety at bay, which is one of my most difficult problems.
You are all strong women, some of us just don't know it yet.
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Sitting Here getting infused and got nauseous and queasy just as my 1st cap is being put on... anyone else experience this? Chemo hasnt even begun.
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dee mendoza - I hope things settled down for you. The first chemo and capping is a very stressful time, but it should get easier.
Hanging in there - I was fortunate to have a medical freezer in my facility so I didn't have to use dry ice, but I don't recall any dry ice users using a schedule like you did for actually putting the caps into the cooler with dry ice. It should be fine to just put them all in the cooler when you pick up your dry ice. The length of your capping schedule is tough, but with AC I'm not surprised. You should be able to cut that down to four hours post infusion once you get to taxol. When I did taxol and herceptin, I capped for four hours after the taxol infusion ended, a total of about 6 hours. A neck pillow is a necessity to support your head! I had an electric blanket - helped a lot.
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Deemendoza,
Yes I had the same experience. The cold caps alone made me very very nauseous instantly. I too was wondering at the end of the first day if it was just the chemo (A/C) or the combo with the cold caps. I was miserable. They called in Zofran for me that first night which finally helped. But I then requested a review of something else to abate the nausea moving forward. I had also already been given Ativan in my premed drip (got it for every infusion including my 12 taxol). My MO prescribed Zyprexa for me for my second infusion of A/C and I took one pill every morning in the waiting room aprox. 1/2 to 1 hour before every infusion. It did the trick. I wasn't ever nauseous again. I was definintely a little loopy/drooly but it sure was better than being nauseous and it made the whole thing much more tolerable. DO NOT HESITATE to ask for medicine to abate this problem. You do NOT have to be nauseous. I am typically very susceptible to motion sickness etc so I consider myself extra sensitive but I never felt bad after that first infusion. Hang in there. I did a total of 16 infusions over 6 months and am very pleased with how much hair I ended up with. I am now PFC 3 months. I would recommend cold cap therapy wholeheartedly. It wasn't easy though, I know!
ILoveArt
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deemendoza, I think the pressure of the caps on our heads and sinus cavities can make us nauseaous and of course the cold.
Hanginthere, it's all very overwhelming to say the least. I used Arctic Caps and had to do it by myself. Getting the dry ice to timing and are they cold enough. It is beyond trying. But one thing you can try to control in all of this. Hopefully it will work out the way you want. If I didn't keep my hair I wanted to avoid permanent hair loss. I remember my first day and watching the IV going in made it real like you said. I wanted to fight the nurse so she wouldn't put it in. Had to suck up The tears too I knew I needed it to kill the disease that put me there. Big hugs
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Hanging in there-- You ARE strong!. This is A LOT for us and then to throw the cold cap into the picture....major stress and you got through it! I received the Penguin cold caps 3 weeks ago. I did not see the questionnaire about age/chemo/etc. Must be new? They said in my packet 50 min before chemo and 4 hrs after. I called the hospital to ask what the procedure was so I knew when we'd put the first cap on. They told me I'd have a blood draw then talk to MO. Then I'd get my IV and they needed to put in the premeds first which would take 15 min then I'd have to wait 30 min for them to lick in. So we decided the cap would go on as soon as the IV was in so that would start our first 50 min. I did wear it for the 4 hrs afterwards. My suggestion would be: get a travel neck pillow! Also, I bought a twin electric blanket from Walmart (Sunbeam velvet-so soft!) so I stayed warm. It is a brutal day but it will be worth it! Looking at IL311's photo, totally motivates me to stick with it! It definitely is a lot of work for the hubby but it makes it go faster too.
IL311--your hair looks great! I'm 2 weeks past my 1st Tx. I would be ecstatic to have that much hair in another month. I'm using the wow hair powder. I haven;t looked close enough to the L'Oreal to see if it'd have any damaging ingredients. I usually touch up my roots every 2 weeks and have it professionally colored every 4 so I'm with you on the greying. But I'll take gray hair over no hair!
Hopful--I'm 1 week behind you on the same regimen using Pengion too so I'm always curious about your posts! Please keep us updated on what to expect.
Meow--I didn't have microinvasion, it was 5mm. Showed up as calcifications on my annual mammogram.
Twice I have styles just my ends with a larger curling iron. Other than that, washing every 4 days with baby shampoo and letting air dry. Anyone else style their hair for special occasions? And how about lashes? I stopped wearing mascara except for those same 2 occasions. Will we definitely loose lashes on TC? I feel like my eyes are one of my better features and I look so run down and tired without curling my lashes and putting mascara on, but I'm scared to.
Runner 70--so happy for your fertility!
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Just finished my 3rd T/C infusion today with my Dignicaps. During my second infusion I had a different nurse put my caps on as my regular one was on vacation. To say they had issues is an understatement. I haven't had a lot of shedding between 2 & 3 however my part is very noticeably wider. When my regular girl saw it this morning she said that never should have happened. I guess that didn't have the cap pulled down far enough. It's pretty disheartening to know that if she had been there or that if they would have done it right that my part wouldn't look like it does now. Oh well hopefully it won't get any wider going forward.
This was after my first infusion, right before my 2nd
This was after my 2nd right before my third one today.
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