Cold Caps Users Past and Present, to Save Hair
Comments
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farmerjo- that report about the Brian Joseph makes me sad. I'm using it right now. And you are so right. It is spendy. Even more so is it doesn't work at all. I hate cancer and cancer product scams. Ugh!
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KD2016, do you get 2D or 3D scans? Wondering how they miss a tumor that size? Dense breast tissue? Mine was just calcifications. I have really dense tissue and my SO said it was a miracle that the radiologist even noticed the little cluster of white specks on such a white background. I've been doing 3D scans specifically because of the dense tissue. I would request that if it's available at your facility.
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KD: I'm sorry to hear your cancer was missed on mammogram. It's devastating. So fortunate that your BS and Onc insisted on MRI. We are in similar boats, as you may know. I had a 2.4 cm cancer, a 2.0 cm high grade DCIS and a secondary smaller cancer all in the same breast that were missed by regular mammo and ultrasound (ultrasound did pick up the very small secondary cancer and that's what actually led to the diagnosis). Following that a 3D mammo didn't even see the 2.0 cm DCIS at all. I do have dense breasts. However, I was always told they were moderately dense , not super dense - level 3 out of possible 4. No one ever suggested routine 3d mammos or MRIs. After the fact all my doctors were talking about how "incredibly dense" my breasts were and that it was fantastic luck they saw anything at all. This made me mad because it felt like they were protecting themselves. Anyway, my understanding is that there isn't a formal guideline for what defines "dense" and the radiologist simply makes a judgement call. That needs to change. It's hard to deal with the knowledge that we try to do everything right and then all hell happens anyway and our lives are never the same. Like you, I'm scared and distrusting of follow-up imaging and of radiologists. I know nothing is perfect but it's hard to find peace of mind when things have gone so wrong before. Hopefully you will get MRI approval and you can do the 3D mammo too.
I wish you clear scans on Jan 4 and will be with you in spirit. I go in mid- Jan. Ugh. Hugs.
Pamela: That's great you're always getting the 3Ds. I wish I would have pushed hard to have 3D imaging and to better understand the risks of dense tissue.
7of9 - You go! That's great news on your hair. Hope you're feeling good, too, because that matters most.
IL311 - I am just in awe of you. (And, btw, still rather in awe of your mastery of the root coverage). I hope your trip has been going well and you're holding up nicely . I couldn't even work during chemo let alone fly across country and try to be friendly and smart for business. I'm just going back to work now and honestly I'm missing more than a random brain cell.
Javamamma and farmerjo - I'm annoyed with Brian Josephs, too. It's over- the- top expensive. I spent around $500 on that stuff (I was hell bent on saving my eyebrows and couldn't use Latisse) and ended up with nothing. I couldn't find good reviews of it online but I kept seeing here on BCO (in other threads) that people were using it with success so I'm assuming sometimes that's the case. So, Java - don't give up hope yet.
Tunegrrl - Good vibes your way. Hoping you get positive news
Have a good night everyone.
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KD2016, I feel the same way. My husband dropped dead 3 months ago. I was diagnosed a month ago. I'm glad he's not here for this. Dealing with his emotions and whatever would have made it all worse/ harder. I've been slow to let people know about it. It's just too private and personal and I don't want to talk to them about trivial crap.
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Hi everyone,
Has anyone colored their hair post chemo? My Artic people tell me I can't dye my hair for 6 weeks after chemo....but there is no way I can wait that long. I know this sounds silly when we are talking about cancer and reading everyone'S post today makes me hesitate to even ask...but I don't know where else to turn? Counting down to my final TC after xmas and just need to get my head around next steps. If anyone can share any info please message me.
Again, thinking of everyone going through this bs journey! Let's keep the faith...
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Willa216, Thanks for the positive vibes. I am trying to work as much as I can and luckily work is super flexible. Since this board is super serious today, I can share a laugh about my super Root covering skills.... My boyfriend asked me why I was so worried about my roots...He said "your hair is brown and now it is growing back black, why don't you just dye the whole thing black and call it a day....
I had to explain my spray painting process...he looked at me like I lost my mind!!!! He said the cold cap thing I get...but spray painting your hair...not so much!0 -
Bareclaws - I'm so very sorry for your loss. I can only imagine how you must be feeling. Wishing you strength. I wonder everyday why some ppl go through so much, and have so much crap to deal with, and how others just breeze through life.
Willa and Pamela - to be honest I don't know if I have been getting the 3D mammograms. I just always thought that the facility I've been going to has the most up to date medical equipments. My upcoming mammogram will be at UCSF, and since I'll see my onco this coming Tues, will definitely ask him about it.
Wishing everyone a lovely weekend.
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Sitting in the chemo chair with elasto gel cap on. I highly recommend neck pillow and heating pad on chest. Also took a percocet and klonopin. Changing out the elasto gel every 20 min first few times then will go to every 25 per recommendations i have read here and hopefully will lose less hair this time. only one more infusion to go!
edit: I asked my nurse how many patients she has seen doing cold caps. I am the first! It seemed strange to me that none of the nurses seemed curious or asked any questions. This is at UNC Hospital Chapel Hill which is a pretty large medical center! I am in theGYN cancer treatment area, maybe the breast cancer treatment area has more cold-capers but will definitely try to spread the news about all the options.
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Hi again everyone, I stuck with dignicap for my second taxotere cytoxan treatment even though I lost more than 50% of my very thick hair with the first treatment. I was encouraged by you all! The sales rep was there and has used cold caps when she had breast cancer 5 years ago. It is very thin in the back of my hair but I have quite a bit of hair elsewhere. The sales rep was telling me that I can cover up with this hair but I am struggling with how to do that. I comb my hair back ward in the morning but it won't stay that way. I would love just to wear a hat or cap but cannot do that, right? IL311, you said you used a spray. That sounds promising. I am totally with you that this is not a vanity thing and no one understands it unless they have been through this. I am very happy that I feel good through all of this but could use some help with how to make my hair look better or do I just need to wait until I am all the way through this to do my comb overs, hats, etc. Also, what do you do when it is growing in? Does it just feel in and you get appropriate haircuts?
Thank you everyone!
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Amyesd, the people I talked to have told me to wait until finished for a trim and color. I am committed to that but am getting mixed advice on coloring post chemo. Hoping for advice.
Regarding hair...L'Oréal has a new spray line of temporary color so I have been using light brown...as The medium brown is super dark. I also have Oribe (which is lighter and smells better but expensive).. I have Wow Root cover, Madison Reed and a clariol all in powder form. I bought Topika too for thinning. Yes, I am a bit cray cray right now.0 -
Oh, Bareclaws, my heart goes out to you. I'm so sorry for your loss of your husband and all you must going through. So unfair. I hope you have lots of support and are finding ways to comfort yourself.
ILC311: Your boyfriend's reaction about hair color made me laugh! Before all this BC hell, I got out of the shower one day (on way to hair appt for color/cut so roots were starting to come in with a vengeance) My husband who's actually smart and has been with me for well over 20 years (thus he knows my hair) told me that I had soap on the top of my head.
Amyesp: I know we're not supposed to use hair accessories but throughout chemo I kept my hair in a loose, lowish ponytail with a claw clip and it didn't seem to make a difference with loss. I lost more hair on one side than the other so I have a deep side part and just kind of swoosh the hair around in a way that looks reasonable and clip it. The great thing is that dirtyish hair stays put nicely
I have also occasionally worn hats that are light and breathable and my hair lived to tell about. No additional shedding anyway. Please note I'm not suggesting - just commenting.. Wishing you continued good luck with your capping. And good luck, Janetsam!
Have a good weekend everyone.
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I washed yesterday and got two big handfuls out. What is everyone's shed pattern?I know I'm shedding daily after each comb but is there going to be big sheds 14-19days after each infusion like the first one, or is it just steady from here with bigger sheds on wash day? Can you share your shed experience?
Janetsam--I, too, am the first one at my facility to use a cold cap. I live in suburb of 150,000 so it's not a small town. The nurse says it's because a lot of patients are older and insurance doesn't pay for it or maybe that they don't have the support of someone changing it. You are one of the first ones I see using that brand. I'll be curious how your results are. What is your regimen?
Amyesd--I had gone to a wig shop to be measured before I started chemo. There are things called partial wigs that you can sit over your crown and still blend into the hair you'll already have. That may be an option if the powders and sprays don't work. Some hair is better than none!
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hi Pamela, I have four elasto gel caps that I bought at a discount on eBay as they were used. About four weeks ago I had a round of chemo which is carbo/paxel every 3 weeks for a total of 6. I think I have lost maybe 40% of my hair from that last round but it's hard to say, I have very thick short hair and there are no bald spots as of now. It's seem to me like I was losing about 1000 hairs a day for a week or more but we do have about 100,000 hairs on our head.at that last round four weeks ago, (it should've been three weeks ago that my platelets were low, and it was put off for week) I didn't do a very good job of capping. I changed the caps about every 25 to 30 minutes and didn't wear it but one hour after chemo was finished. After reading here on this board, yesterday I went with going every 20 minutes for cap changes and wore them for about four hours after chemo. The caps were very cold, below -35 F, laser thermometer didn't register at such a cold temp. The temp of my scalp when i removed them was around 60-65 which is about right from what i have read.Also I wet my head and used a shower cap underneath the caps. Also i pushed the caps down a lot to ensure that the caps were making good contact with my skull.( i do like the elasto gel caps and how they fit. they come down quite a bit all the way around.) this time I will not wash my hair daily like I did after that round four weeks ago so I'm hoping that I will lose less hair this time.
My chemo regimen and radiation regiment is of course different than for those of you here who have breast cancer. I had serous uterine cancer stage 3 so my regiment was three rounds of chemo starting in June and then six weeks of radiation and now I'm back to the three rounds of chemo and then I will be finished. Between the end of my last three rounds and the beginning of this cycle I had grown quite a good head of hair grow back and it's quite curly which is new for me and didn't want to go back to a bald shiny scalp again. At the hospital when I spoke to my oncologist about chemo ice caps she said that they were not able to provide them because of the expense and it is a large teaching and research state hospital. I I will certainly give my name and number as a contact to the comprehensive care center at the hospital as a resource. i know a lot of the folks that are served at this hosptal are poor and come from all over the state for care (North Carolina) i am thinking of volunteering as a support person after treatment is done as a way to possibly easing back into working at my job as Psych NP at the hospital and maybe this time working cancer patients which would be so rewarding.
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hi Pamela. , so my biggest shed was probably the first two wash days after second treatment. 1st wash day for sure and that week following second treatment. Week 2gets better and week 3even better. Im inn my 3rd week now have my 3rd infusion this Thursday And my shed is stable. I shed but nothing crazy. I'm Just wondering if im gonna have anything left by my 6th infusion. Im just glad to still feel "normal" for no. I mean I don't wear MY hair the way I used too i have to leave it curly but it def better than no hair. Helps me be able to go out in public and not look sick and get stared at.
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Hopfull-- Thanks. I feel I did my big shed on day 19 which was 2 days before treatment #2, then yesterday which was a week after treatment 2. Just scared on wash days!
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janetsam, I, too, am perplexed at the lack of education in the oncology field about cold capping. I'm in the hospital with ITP, on the onc floor, since chemo caused it, and have had some lovely nurses. They never heard of cold capping. Even though it's going on at the onc center on the other side of the parking lot!
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Hopeful2 and Pamela23 and all others with cold capping. Thank you so much for sharing. I'm still trying to figure out when the shed is expected. I know some of you have chemo every 2 weeks and some every 3 weeks. I'm on chemo every 2 weeks and I'm on Day 20 after first chemo, so I am 5 days past my second chemo. So from what I can gather is that when I wash my hair on Dec 23 or 24, I will have my big shed. I would like to be prepared, emotionally, but not sure how more to prepare than to expect it when I wash my hair.
I've been following all your posts, I think I slept for most of a week after my second chemo. Again thank you so much for sharing. I've had a lot of problems with depression since diagnosis, so memory and concentration are busted. I'm starting to come out of the fog, but still in.
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hangin in, sorry your in a fog. Have you talked to your MO about maybe prescribing you something to help you feel emotionally better? And your not washing on the 3rd day after each chemo. I'm doing penguin cold caps and have to wash the 3rd day after each chemo to get all toxins out. But ya. You probably will have the big shed this coming wash.
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hanging in, i was getting to where i was crying a lot and sad much of the times so i went on prozac about two months ago and the difference for me is amazing. usually christmas time is really hard but i am having a great time decorating, wrapping gift etc. and lots of energy! it might be that treatment is finally going to be over after a long 8 months or maybe it's the prozac who knows. with a high probability that my cancer could come back i also figured i better be ready for the anxiety that come with the end of treatment too.just want to throw that out there. hope you feel better soon.
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Bareclaws, my platelets have held up treatment a few times, they got down to 65,000 at one point. i am wondering how low they go before one gets hospitalized
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Shed started day 21. If I didn't have a calendar, I would not have remembered I washed my hair day 3 after chemo. So shed started today (Dec 18) instead of expected Dec 24, which I am actually grateful for since it is a little easier to take now than on Christmas Eve. I still have to wash my hair on Dec 24, but it will not be the first shed.
I'm on anti-depressants, since about 5 days after I was diagnosed, since I knew I would be depressed and this was not going to be short term. Anti depressants are finally starting to work after 6 weeks, but I am still overwhelmed. I am coming out of the fog, but sort of wish I could just sleep for the next year. I'm not at the point where I feel motivated to do anything yet.
Thank you for the support. Here's hoping the shed is not too bad. I have tried hard with the cold caps, but it is not a perfect system for amateurs.
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Hi ladies, just wanted to let anyone know having bouts of depression. I had no motivation for anything , never wanted to leave the house. I've been using sublingual vitamin B12 25 mcg for a few weeks. And it's been helping me until I can see a therapist. I wanted to try something along the lines of natural without harsh side effects. If it didn't worked I was going to research SAME or finally get something from Dr. It also helped me when I had bad PMS. My hot flashes are alittle better too. Everyone is different but worth a look into.
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Hello Ladies!
Sorry for those heading into the big shed. Hoping it's not so "big".. I still shed on wash days but have gotten used to it and dread it but it doesn't cripple me like in the beginning. I also have practiced "risky hair behavior" so I feel like I'm lucky it hasn't all fallen out. I have blonde hair and no gray just have mousy 2 inch blonde roots. So don't have any root cover options. I think? My hair looks like the new/or old? Ombré style.. Maybe have lost 30% of my hair, nothing I notice beyond what I see come out and no one else notices anything. At my kids school one of the office clerks told me I didn't look well. (they know nothing but that I was in hospital last week) Maybe losing 10 pounds, hair roots make me look dowdy, in hospital with pneumonia 4 days last week? I was even dressed up and had done more with my hair than usual. Well, it made me feel bad. Here I thought I was being so discreet but I looked bad anyway..
Tomorrow is my first DD Taxol and I am really nervous. Don't know what to expect. My capper said I only have to wear caps for 3 hours versus the 5 hours with AC treatment. Still really nauseous when I think of cold capping. Went into the frozen food section of the supermarket yesterday. Got the dry heaves. I have to hold my nose if I go into the freezer or refrigerator at home. Sorry TMI... Anyone with DD Taxol (4 sessions every two weeks) please let me know your experience.
Everyone have a good week, have non eventful treatments, no big sheds and most of all peace of mind, even if for brief moments.0 -
Janetsam, myplatelets got down to 2000, got a platelet infusion, back down to 7000', another infusion, back down to 6000 and now I'm in the hospital for the fifth night in a row. I got immunoglobulin and am on high dose steroids and so far the numbers haven't gone above 47000. Beyond discouraged...
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Sorry Bareclaws, sounds discouraging for sure. I hope it is resolving or will start to resolve soon.
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Meow - I'm sorry you've been feeling so down. I'm having the same issues. It's hard. Thanks for the thoughts on B12. Glad your hot flashes are a bit better Hugs to you.. I hope you will be good to yourself.
Luvmyys - Hope Taxol went well for you. I had a few doses of Taxol and Herceptin only before other chemos were added. I felt so much better on just Taxol, if that's any help at all - I hope this next step will be easier for you. Whatever happens you are nearing the end of capping! Your hair sounds like it's still doing really well in spite of your hospital adventure (so sorry!). I know what you mean about disappointment that others can see we are sick or struggling when we try hard to look like ourselves. Bleh.
IL311- I'm wondering about your hair color question because it is on my mind A LOT. I have given up trying to even hide the gray roots with the dark hair (similar to yours) so I am nearly crazy thinking about how to color. Penguin says to wait 3 months for gentle color then 6 months for regular color (permanent or highlights). At least that's the info that I got. So imagine my joy when you said Arctic suggested 6 weeks? I don't know - my hair is still shedding a bit 6 weeks PFC. If you do color early maybe do something really easy on hair. I've been looking at Simply Organic. There are a few other organic colors mentioned on these threads that look good too and I think people have been happy.
Hanging in, Janetsam, Hopfull, and everyone else - best wishes for holding on to your hair.
Peaceful hearts to everyone.
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Been off the grid the last week. My third treatment on 12/9 hit me hard but recovered 5 days after and tried to forget This whole cancer nightmare.
Alas, back to reality...one treatment left. My third treatment did not produce a major she'd like 1 and two but more all over shedding....I would say I lost about 20-30 percent thus far...but lots of breakage...and my spray painting is getting old. Final Chemo is on the 29th...
Willa216- thanks and looking for some gentle options. Please keep me posted. Truthfully I am not sure where I got the 6 week number from...But just know I won't make it until March.
The more I research, the more confused I get...are we not suppose to dye our hair because it will fall out? Or it is the chemicals or smell? Or the cold caps????
The Komen site says that you can color your hair as soon as you have growth PFC so wondering why we can't for 3-6 months after cold capping. Any feedback is appreciated...
Hope everyone is hanging in there. I got to my parents house yesterday for the holidays (I live in Chicago and parents live in NJ)...was greeted by my mother telling me I looked tired and needed mascara:). Forget that I got up at 3 am to catch my flight...
this is a super humbling experience and hope I remember never to take anything for granted!!! Hope everyone is hanging in there
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Meow: I got depressed two weeks after starting Tamoxifen. I have never been depressed before and I was fine during treatment. It is a common side effect from hormonal changes. Recently started on Effexor and feel a bit better.
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Willa, Thankyou! Your always source of comfort to us all
Heidi, Thankyou also! hormonal factor is difficult at times and I'm dreading when I get my ovaries removed. Its hard now, what will it be like then. Is Effexor for depression or for hormonal issues ?
IL311, I used Artic and it was advised at12 weeks to dye hair unless the protocal changed.
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Hi. Hope everyone is well. I had my 3rd t/c chemo today. One more hour to go with cold caps. It's so much work doing them. Gets me annoyed. And I was freezing today even with a heating blanket. I'm dreading wash day.
Thanks to everyone that post. It's very helpful and encouraging. Today I just thought to myself as I was feeling cold and annoyed how I can do this 3mire times. But I will as I see light at the end of this dark tunnel.
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