Cold Caps Users Past and Present, to Save Hair
Comments
-
tshire, I love it! Good job spreading the word about cold caps! So many doctors and patients do not know about this amazing technology!
0 -
Tshire, fabulous video. Gorgeous wedding pics, too. Congratulations!
0 -
well I guess today marked the official end of treatment for me, at least hopefully! I got my port removed today. In all honesty, I've grown to love it and didn't want to see it go, but it's a foreign body and is always an infection risk. But deep down that port became my security blanket. It sounds insane but I felt like as long as I had it, the evil cancer spirits would stay away. Funny though, when I told my surgeon my feelings about it while he took it out, he knew exactly what I was talking about. So maybe I'm normal. Now I feel vulnerable. I spent a lot of today kind of crying and just looking back at the last 9 months and how far I've come.
But now, the place where the damn thing was is hurting like a sonofabitch. I guess I thought it wouldn't hurt. But it's an incision and the marcaine that numbed it wore off. I thought it would last longer. Usually it does! Tomorrow when I can remove the bandage, I'm putting my leftover EMLA cream on it.
Everybody who hasn't seen me since before chemo is raving about my hair. I'm so glad I did that pain in the ass, miserable chemo day, cold capping! If I get a recurrence, I'm doing it again. And I think I'm finally beginning to resemble the person I was before chemo. It's amazing how 4 infusions really takes its toll. One of my doctors today forgot I'm 45 and told me she keeps thinking I'm in my mid 30's. it made my day! Between chemo and having no estrogen on board right now, I feel like I'm looking a little older than my age.
I hope everyone has a great weekend!
0 -
Hooray, Runner! Even if it is a little bittersweet, not needing the port anymore is really good! I understand, though, I was a little reluctant to see mine go. Sorry to hear it hurts. My biggest annoyance is the divot over my jugular where it went in, which is visible reminder that it used to be there…
You do look young. Well done for keeping it up! Some days I look in the mirror and feel so old!
0 -
Zinny - you look really beautiful!
Tshire - Congratulations on such a gorgeous outcome and your marriage. The video is great!
Runner - Congrats on getting your port out and officially being done with all this hell. I'm so happy for you that your hair is amazing. FWIW I too think you look young in all the pics you've posted... Hope your pain level is under control.
Daisy - Your Perjeta question is a great one. I agree with JCS in that I think conclusive data is lacking. I'm doing 12x TCHP (Taxol, though, not Taxotere). I've spoken to two different Penguin reps - one who said to treat it as a chemo and the other who said not to. My husband called the pharma company and spoke to someone there who said we didn't need to cap. My MO also says capping is not required but I feel like she doesn't have enough experience with it. There aren't that many cappers where I am. The prescribing information for Perjeta does include hair loss so this all seems very confusing to say the least. I know this isn't helping you. I'm sorry. I guess I'm just commiserating because it's hard to know what's right. I think if I were to continue after the current 12x protocol with only Perjeta AND Herceptin I wouldn't cap. I am at my limit with everything. Wishing you so much luck with your decision.
Good luck to all cappers and shedders and to all the new hair do's out there. Peace.
0 -
Runner, congratulations. I totally get what you are saying. I feel exactly the same. I am still on Herceptin and I know it sounds strange but I am looking forward for every 3 weeks visits to the hospital. Yes, I guess , it is like a security blanket for me.. I feel as long as i am there it will not come back.
I am also very happy about cold caps. Oct.19 will be 3 month pfc. I colored and did highlights 10 days ago. I am happy! My hair shed tinny bit but no bold spots and I think they look good.No one ever guested I did chemo. I started Tamoxifen this week and terrified about se. So far had very bad headache one of the days..(read it is possible from Tamoxifen). I am very worried about weight gain on it, but my dr. says it is not from pills that we gain weight but from overeating... So far I only lost weight. I lost my last 5lbs I always wanted to shed and was not able to do it before chemo. But once the steroid water retention was gone (took me a while) I lost 12lbs!!! But it is because I am on strict diet : no sugar, just some fruits and dark chocolate, no milk based products, no red meat. And I try to exercise every day. Hope it will keep me from gaining weight.
Tomorrow I am going for 5k breast cancer walk in Central Park
Should be fun to see all strong ladies out there who went through what we did.Anyone else in NY area doing a walk tomorrow?
I would like to wish all the best to all the ladies here who is cold capping and going trough treatments. Stay strong! Best of luck! Otne day you will be done with treatment and will be like me just looking back at it as past....
0 -
Victory, you sound like me! I'm so paranoid about weight gain! I've lost 5 pounds since chemo and started tamoxifen about 6 weeks ago I guess. I haven't really had all the horror story side effects I read about. A hot flash every one in awhile, but no aches or pains. I think it's making my boobs shrink though. I'm still taking prednisone so the fact I haven't gained weight is a small victory. I hope after I'm done taking them I'll lose 12 pounds too! I just don't want to believe that if I really am in menopause, I'll automatically gain weight or have a tough time losing. I usually run a lot but it's taking me awhile to get back into it. Hopefully once I'm logging more miles it will fall right off. Fingers crossed.
Has anyone heard from Phaila? I haven't seen her post in awhile. I miss her dry wit. I hope she is doing well. I know I should move on but you guys have become like a family. And my friends here don't understand my feelings about cancer and stuff. They want to see me move on and leave this behind me but I can't just pretend like the last 9 months never happened. They did happen and it was really traumatic. And there's still no cure for breast cancer. All I can do is hope and pray it doesn't come back or that any cancer cells left stay dormant or die but I will never stop looking over my shoulder. I don't think they grasp that.
0 -
Hello! This is my first time to post as I have mostly just read/searched for topics. I started TC chemo on 8/16 and have my 4th and final treatment tomorrow, 10/17. Praise the Lord! Do you ladies put anything on your hair like conditioner or something during before and during the capping process to keep your hair from getting so tangled during the capping process? Thank you!
0 -
I did not. I usually just waited for my hair to thaw out and sometimes sprayed a moisturizer/detangler in it. It was always a mess. Congrats on your last treatment!
0 -
Viktory - I'm happy to hear your hair is great and you're doing well on Tamoxifen! So reassuring. Thank you for such an encouraging post! Are you have any side effects from Herceptin only?
Runner - You sound like you're doing well on Tamoxifen too. I'm scared of that (and everything else upcoming...) so thanks for sharing. I know what you mean about friends and family and moving on. I have 2 more rounds of chemo - just two weeks. Everyone is already telling me how great it is I'm almost done. It's true for chemo. But then I have possible radiation (that scenario just came up last week), a difficult hormonal therapy situation to figure out, additional surgery and herceptin through Aug. Then there is the fear. It feels endless. And lonely. Plus hair is jumping ship in a rather unprecedented fashion - like it wants out. But then who wouldn't.
Grateful: I don't use anything on hair after capping. I've had really good luck until the last week or so. If I had to go somewhere where I couldn't look like a deranged drowned rat I'd think about it, though. If you go back through the thread I think you may see people used argan oil as conditioner and/or perhaps cornstarch to detangle dry hair. Also, if you look on youtube there are some people who use hairnets while capping to keep hair from getting all caught up in the velcro (penguin). I don't know it that's a good idea or not, just letting you know it's out there. Good luck !
Take care everyone.
0 -
Hi there! I have been on tamoxifen for over a month now and feel fine! Have even started running again with my expandor boob and did 10km today! 13 weeks PFC and what is left of my long hair keeps shedding so am going to have to have a short cut I think! Cold caps only spare the baldness at least in my case!
0 -
I agree with Jane. Tamoxifen is no big deal. A hot flash every once in awhile but nothing like the symptoms I had when I took Lupron shots during chemo. I usually don't have night sweats either. I was so worried about it because of stuff I read. I guess the people who don't have problems don't post anything.
Willa, you know, it's hard being almost done and explaining to people that the side effects from chemo last awhile and you aren't really "done". I had my worst side effects from chemo after my last one but what I didn't realize is that it caused a bad flare of ankylosing spondylitis that I didn't know I had. I was so miserable and had difficulty walking but I think a normal person would recover just fine. I thought all my lasting pain was normal. I got so down about it but now I'm running again. I wish I'd known about the disease before I started chemo. Oh well. Hang in there! Life will get better for you and your hair will stop shedding in a few weeks and before you know it, tons of hair will start growing in! I think I have more hair growing than I lost! It's great! And it's coming back the same color but a thicker texture. I still have neuropathy in my legs. It's random. When I run sometimes it feels like I'm wearing an ankle weight. Sometimes it doesn't. Then there are days like today when my knee is numb and I think I'm walking weird. But it's getting better.
0 -
Willa, I understand what you are saying. I have the same fears and no one understands it...Sometimes I feel like i am doomed and nothing will stop it ...Yes. we kept our hair but there is a life after chemo ....I changed diet, i exercise every day but where is reassurance it will not come back? Even kid"s movies now show someone dying from cancer. I went with my son to see "Middle school" and there a boy who died from cancer. And it is all around.. I just get so terrified.. And I am not happy about f Tamoxifen.. It is a week now I am on it, so far OK. but who knows..And sex.. Where did the sex drive go? And it is not even the same anymore and all those hormones suppose to make us even drier.. Life changed for us...
I don't know if it is herceptin or just past chemo side effects, but i have my legs pain. It is stiff, like if i sit for a while it is hard to walk after. Or in the morning when I get up from bed I walk for a while like penguin. And Achilles tendon hurts so bad. Especially if i run or walk for a while. It does not stop me from my daily exercises, but sometimes I get so down and upset because of it. I asked my dr. what is it if it is side effect from chemo etc. No real answer besides :" why people blame all on chemo?".... HE send me for blood work to check something i think related to muscle stiffness,but it is a week now after the test, but no one even called me with result. I am having my Herceptin tomorrow maybe I will try to find someone there to ask. The other problem I have , I believe either related to Herceptin or related to induced menopause: chills.. I feel them during the day and at night. Hot flashes don't bother me much during the day, they not that often, but at night I have horrible night sweats. I have a towel next to me to wipe the sweat out... And the mood.. omg I get irritated all the time...
On a positive note, I did 5 miles Breast Cancer walk yesterday in Central Park, NY. I had a few friends walking with me. Funny, but new friends. All old were too lazy to wake up early . But it is OK, I am not expecting from anyone to do it.. I made my own team and raised $735!! It was inspiring experience to see so many people walking to find a cure for this dreadful disease.
0 -
Jane, Runner and Viktory - thank you for your responses and encouragement. Today was such a bad day. I lose my perspective sometimes. It's always good to hear that you're sounding stronger and feeling better as time goes by - hopefully soon there will be no pain at all. And of course it's great to hear positive things about the ever important hair. ..like it returns. Runner - I'm visualizing your thick new sprouts like some fab flower garden in your head. Your body must be happy!
Viktory - that's impressive that you raised all that money and went out and walked with new friends. So great. I hope you get an answer on your muscle stiffness soon - that would make anyone frustrated and down. There are so many changes in your body right now I guess there are lots of possibilities? Also, I hear you on sex. I've literally been nauseated since August 12 so definitely not interested because of that, but I can feel the differences in my body. Hopefully in time we will adjust and things will be good again. Different but still good - at least that's what I tell my ever so patient (?) husband. Treatment is physically hard, plus there are the emotional side effects too. A lot of factors at play. I wish I had something smart to say about this but I don't ;(
Thank you for being open about what is going on with your friends/family. I miss being able to be truly honest with many of them. Maybe things will change with time when we feel less vulnerable. Right now I feel pretty disconnected. And I agree with you, Viktory - I see cancer everywhere.
On the fear factor - do you meditate? Just wondering because there seems to be so much research showing that it significantly reduces recurrance rates, minimizes anxiety and boosts immune function. I work with a holistic doctor who recommends the diet that you've described, Viktory. And of course he's adamant about meditation as part of the healing trifecta, along with diet and fitness. I'm going to try to double down on this since I could def use a switch out of flight/fight.
Again, thank you all. Best wishes to everyone
0 -
Hi,
This is my first post. I am starting 4 rounds of Chemo next week. I am deciding between Peguin or Artic Cold cap as hair lose is overwhelming for me. I am private person so want to avoid the hair lose. Any thoughts welcome? I was hoping to avoid Chemo but because of the Micromatasis in one one, Oncologist will not recommend skipping. Thank you in advance
0 -
IL, what is your chemo regiment? I did ACC on Taxol and it worked perfect. No hair loss just more shedding as usual after washing. But it has it's own downsides . I think from what i seen it is more uncomfortable then Penguin. (under chin strap is very uncomfy and my husband had to 'work those caps out" before putting them on since they were very stiff. Also we changed every 15 mint not 20 as in protocol. From my observation: ACC better costumer service and cheaper and works as good for something like Taxol. Also depends who is your capper will be, since it was not easy to 'stretch" those frozen caps to fit.
If you will need more information on ACC like details you can always contact me I will be glad to help.
Best of luck!
0 -
IL:
I'm doing Penguin. I've done okay so far but starting to lose a ton of hair after 9 of 12 rounds of Taxol, Carboplatin, Herceptin and Perjeta (just 3 of Perjeta so far).
As Viktory said, she's had incredible results with Arctic. Others have done well with Penguin. It seems pretty difficult to predict who will have success. Maybe it depends more on what protocol you have and how your body responds to chemo rather than which company you use, since the concept of freezing the hair follicles is the same for both.
One comment on Penguin - there are a lot of flaps that need to be securely tightened around your head. My husband and my mom are both helping me. With Penguin I think it might help to have more than one person to position/move all the frozen flaps - and extra straps if you get them - into place. It does take a lot of strength to maneuver the frozen caps.
Best wishes to you whatever you decide. I'm like you - super private. It has helped to have some hair during this whole process even though it's not perfect by any stretch.
0 -
IL, there are a couple other threads here regarding cold capping. The first one is a comprehensive information which also compares different caps. It can start you with giving some answers to main questions. It was wonderfully put together by dancetrancer:
Cold Caps FAQ's - newbies - how to save your hair from chemo
The other one has success stories from some of the users:
Cold Caps: Success Stories with Photos here!
0 -
Willa and Viktory- I can totally relate to the dread you feel about life after cancer. It seems so random who gets a recurrence. I see people on here who were stage 1 then 3 years later stage 4 and it freaks me out. My friends don't understand and if one of them tells me to think positive one more time I'll probably start crying. Telling me to be positive just makes me feel like it will be my fault if I get a recurrence because I wasn't little miss Susie Sunshine 24/7. Quite simply, they don't get it unless they have gone through it.
And I want my damn period back! I know estrogen is evil but I want to know that cancer didn't steal my fertility, too. It's been 4.5 months since my last Lupron shot should have worn off so where is it?! I had zero signs of menopause going into chemo.
And Willa, yes the hair is flowering. My profile pic was taken about 2 weeks ago. Other than the steroid face, I look much more like the old me. I finished chemo May 19th so I guess I'm 5 months PFC tomorrow! Before you know it, you will be too! I spent all summer doing radiation which sucked but things are starting to get more normal, even though I'm still learning what my new normal is.
0 -
I've been meaning to post in this thread for awhile. It was all of the great info here that convinced me to give cold capping a try (though I need to do a lot of catching up on the newest posts). I'm doing cold capping with the Dignicap machine. They have 3 or 4 cap sizes, and I got fitted for the one I use on the same day I had my chemo education.
I had my first infusion on 09/29 and am having my next one tomorrow on 10/20. I get infused with perjeta, herceptin, taxotere and carboplatin. The nurse put the cap on me only for the taxotere and carboplatin portion and then left it on for 90 minutes after those 2 stopped infusing.
Since the nurse said I have thick hair, she turned the machine down to 3 degrees Celsius. As soon as she turned it on I could feel the cold circulating through the cap (there are tubes crisscrossing the inside of the cap), but it wasn't unbearable. And after a bit, my scalp got mostly numb so it wasn't too bad really (not nearly as bad as I'd been fearing - esp since I had to wet my hair before putting the cap on). The strap under the chin was the worse part. I think for tomorrow I'm going to tuck a bit of wash cloth under there to cushion things. Also, last time I avoided drinking much liquid during the infusion, to prevent me from needing to go the the bathroom (which would require my being unplugged from the machine). I plan to do the same this time around, except I'll suck on frozen grapes and eat those (to try to spare my mouth from being so affected).
0 -
Hi ladies I haven't posted in awhile after my 3 rd infusion it got really bad for me mentally and physically. I totally agree with you ladies about no one understanding I'm so lonely and fearful. All I hear is think positive , is there a switch ?? I did finish my treatment of 4 I'm glad but wish I was more joyous. I went to the MO yesterday and left upset. I thought he would be more congratulate but since I didn't do the full 6 cycles ( I got 2nd opinion who's been MO for 36 yrs said the last 2 were pointless ) he reviewed my case kinda flat like I'm on my own. He said one of the things to be monitored for in blood work is Bone cancer which had no cure. I didn't sleep at all last nite and felt so doomed. I also have been telling him about severe leg pain that spread all over. He said possible nerve damage in muscles from chemo it may tske few wks to recover. Could barley walk or get dressed and I asked for blood work to see of I'm low on Vit d (Viktoryak maybe that's what you need) and he said to wait til next apt I thought would be within a month. Nope I'd hve to wait 3 months! I feel really bad. So I'm gonna try to get in to my dr.office Just disappointed. I wanted to end on positive note. Tell me am I overreacting ?
I also have night sweats and bought some black cohosh hope it works. I have to keep a wet washcloth by me too. I wish I could get some good sleep to recover! Still have 2 surgeries to go too:/
I'm 4 wks PFC and no regrowth yet. I need a break
0 -
I am looking for a good shampoo and conditioner! What did you use that you liked???
Thanks,
Kathy
0 -
KThielen - When I first started cold capping I bought Onesta "Strengthening" shampoo, per recommendation from my local Penguin rep. I really liked it, and it smelled wonderful. I bought it on Amazon; when I needed more I couldn't find exactly the same thing so I bought a different variety of Onesta which I didn't like as well. I just looked on Onesta's website and it appears they no longer make the "Strengthening" formula - they just have "volumizing" and "hydrating". So I've been trying different brands and not really happy with any of them. I'll be happy to hear of new brands to try also!
0 -
Meow0369 - I'm really sorry to hear that your MO wasn't more encouraging and supportive after your last official infusion. That's a big milestone, regardless of the surrounding circumstances. So congrats to you!! And I'll definitely keep you in my prayers regarding your leg pain. That sounds really rough.
Kthielen - I'm continuing to use the same shampoo and conditioner that I did before (but the shampoo was already sulfate-free and gentle and the conditioner moisturizing). I use Shea Moisture Jamaican black castor oil shampoo and Trader Joe's tea tree tingle conditioner.
On another note, I had my 2nd infusion today. This time I ended up wearing the cold cap for the entire treatment (instead of just during the parts where they infused the chemo), along with the usual 90 minutes after. So we'll see how things go hair wise. The nurse said that after the 2nd infusion is where I'll really see if the cold cap is working for me.
0 -
Runner: On the thinking positive. So hard sometimes but maybe we will get there - not all the time but much of the time. I had a conversation today with the primary care doctor at my treatment center who is in charge of the survivor-ship (is that a word??) program. She said it's just best to say you're doing well to everyone who asks and share the hard things with only a trusted person who can cope, or a therapist. Otherwise, we can get so mired in dealing with peoples' inabilities to cope with our fears, or their own fears, that it's stressful and disappointing and makes us feel more alone and also blamed. This is contrary to how I operate because I tend to share both good and bad with people close to me, but I'm thinking she's right. I always thought my relationships were deep with my closest friends and of course my husband, but it has been an eye opener to throw cancer in the mix. On a different note, I'm sorry you're struggling without a period.Upsetting. I will be thinking good thoughts for you that your body will right itself and give you what you need and want. Thank you again for being so encouraging about the new normal, whatever that may mean to all of us..See, not only do you have great hair, you really are positive
Fighting - wishing you luck with the Dignicap. I'm doing TCHP - so far I'm doing okay although I've lost a worrisome amount of hair the last couple of weeks - prob about 25%. I'm not sure what's normal with the caps. Still holding out hope to have hair at the end of all this. I'm curious to see how you like Dignicap. It sounds so much better than all the manual capping, for sure. Are you in SF or NY? Hope your 2nd infusion went well!
Meow - so nice to see you again! I was wondering how you were doing. Congratulations on being done! I'm mad at your Onc for you. I get that doctors see patients all day every day and oncology is challenging but it's important to take note of big milestones. I hope you can work with someone who's better attuned to you. You had a really, really hard time with chemo, and a hard time at home, and certainly he should have been careful to let you know how much you've accomplished, listen to your concerns and make you feel cared for. I'm sorry for you that he didn't. On the hair front, I hope you see new hair soon! Hopefully that will help you feel like things are moving forward positively.
Kthielan: I don't have a good rec on shampoo/conditioner. I am using Giovanni Tea Tree shampoo and conditioner (ends only and not often). Not crazy about it but not feeling up to scouting around. I hope somebody else has ideas for you too.
Jane - Would you mind if I ask how much hair you think you've lost PFC and what that means per day (ish)? The reason I'm asking is I brought the PFC hair loss up with my Onc who says she hasn't been seeing that. I find that odd because it seems like a very common problem here. Maybe we just hear from people with the problem or maybe she doesn't see enough cappers.
Have a good (almost) weekend everyone.
0 -
ok this is a random question but do you guys remember getting that sunburned scalp feeling during chemo right before starting a shed? Is anyone still periodically getting this? I finished chemo in May and 2 or 3 times now since thenI've had that burned feeling on my head. Today I have it and it really hurts! I was just kind of wondering if anyone else has this!
0 -
Meow - It's so hard to fight the feelings you are having. We can all relate. Though it sounds as if your MO was particularly unsympathetic. Maybe a new doc would be a way to go - - so you don't feel like you're on your own moving forward.
I will reassure you that by 6 weeks PFC I started to feel like myself - the achy legs went away. (I had them too - - felt like I had done 100 squats most days). Once regrowth starts - you'll feel better - who knew I'd be happy to see leg hair, armpit hair, etc grow back...and it seemed to take forever. Now my spiky hairs are starting to lay down (I'm 13 weeks PFC), the Arimidex side effects are even settling down.
Yes, chemo is a BITCH but it does fade - and you will return to a more familiar version of yourself. We are never the same - but we can be ok, and even good. Glad you shared.
0 -
Willa216 - I'm in the Midwest, and I'm really glad to have the Dignicap as an option. Before I realized that I did, I was planning and researching which manual cap company I was going to use. But it does take a load off to be able to have the cap put on and leave it. The only downside is that if I want to use the restroom I'd have to take the cap off and get unplugged from the machine. So I try to limit my fluid intake during chemo to prevent bathroom breaks.
I have curly hair, so I always feel like it's a lot of hair lost when I detangle my hair (even way before I ever started chemo). So since starting chemo I'm even more paranoid about analyzing whether I'm losing a normal amount of hair. So I definitely understand how you feel on this.
Btw, my second infusion did go well. Though when the nurse took the cap off, she told me I had ice crystals in my hair (since I have to wet my hair before the cap is put on). It didn't happen last time and I do think I wet my hair more thoroughly this time. At least she told me I wasn't the only person to have that happen using the cap. But I thought it was weird, because once my scalp went numb I couldn't feel much of anything.
0 -
Aimless - we finished chemo on Jul 5th, so we're 15 weeks PFC as of this past Tues but who's counting☺️
I'm getting used to my very short haircut, and according to my stylists my head is filling in. Returning to work has been a good distraction, keeping me from thinking about cancer returning and hair not growing fast enough, etc. Although most nights I'm just totally exhausted.
I don't talk about my fears and anxiety to anyone anymore, cause as we know no one gets it unless they've gone through it. Not even my own husband who's very caring and has been very supportive.
Anyway, have a lovely weekend all
0 -
Willa- thank you for that! I think your doctor nailed it. And I do spend too much time disappointed because my friends can't handle hearing about my fears. It's a heavy burden we all bear and I think it was good advice to keep the fears to one person or a therapist. It makes me sad that I can't share my fears with my best friend but I can feel a wedge of resentment in between us and it all belongs to me. She has no idea the guilt I feel every time she tells meto think positive and be happy.
The way you worded that was so perfect. I may have to write it down and keep it in my purse and read it whenever I feel disappointed that a friend let me down.
I'm running in the Race For the Cure tomorrow with my brother and one of my running friends. She and I ran 16 miles the day before my lumpectomy in March so it's neat she's running it with me tomorrow. I was training for my first marathon when I got diagnosed and I was insane to think I could run a full marathon that fell right in the middle of chemo. I quickly learned that was impossible. So I did a half marathon instead!
0
