Cold Caps Users Past and Present, to Save Hair
Comments
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Yes curly thank you so much for posting your experience and hanging around to help others on this thread. I agree with jc - from following the stories here, about a 50% success rate with AC.
So NYinshocked you will have to ask yourself if the expense and dealing with cold caps would be worth a 50% chance of saving your hair. Only you can answer that question for yourself. Note Elastogels are much cheaper and several women have had success here with them (I think TC regimen) - in case that affects your decision. Good luck to you in your decision, and if you decide to pursue CC's we will be here to support you through the process!!!
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Mrygolds13, I'm sorry for your dx. I was diagnosed Stage IV right out of the gate. It was a shock, but I'm very hopeful. Keeping my hair has made everything seem more normal - as it does for all the women here. Cold capping was definitely worth it for me.
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Hello, Lucy.
I am so very sorry to hear of your diagnosis. Unfortunately, we all know what your going through :-(
I had A/C and Taxol and I saved my hair. It isn't perfect or exactly like it was, but I never needed a wig.
And no one would know what I went through. Here are a few pics, so you can see.
I completed chemo on Nov. 7th, 2014. I took this picture Nov. 17th.
This picture is from the end of Dec.
My hair has gotten a lot thinner, but I believe a lot of that was from laying on my back for a month after my double mastectomy on Dec. 15th.
When I get a chance, ll take a picture of what my hair looks like today.
I just wanted you to know that some of us have had luck with A/C.
Do you know how much of it you will be getting?
I had one large syringe full. I can get the exact amount, if your interested. I just need to track down that paper.
Personally, I think that has a lot to do with how well the caps work. But, what do I know?! lol
I wish you lots and lots of luck if you decide to give cold caps a try.
Lynda
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Hi, again Lucy.
Okay, this picture is from today. I washed it Sat., so it looks pretty flat.
You can see the ends look bad and I just had about 2 inches cut off a week or so ago.
But, there is still hair on my head. And, if I run my fingers through my hair, I can feel quite a bit of new hair
growing.
I haven't used my blow dryer or round brush, so I am hoping when I do, it looks better because I am probably going
back to work next week.
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hi ladies,
I have a very painful area on my scalp I looked to it now and it is light brown I think it is from the cold cap because I felt it yesterday when my husband put the cap what should I do I am afraid this affect the hair focillies any advice ??
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Hi, Roby7 :-)
I actually had a small black spot right on my part that I think was frost bite.
I never put anything on it, I just made sure I switched up my part more often when changing the caps.
I didn't lose any hair from it, and it eventually healed.
I know others have made suggestions on this forum, though. So, maybe look back a few pages, or hopefully they will respond again.
Lynda
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joeyjamesmom - your hair looks beautiful! Thank you for chiming in and offering more hope to those who will be doing AC!
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thanks for all the responses, I will be doing 4 round of AC and 4 round of T. Don't know the dosage but it will be once every 2 weeks... I am still debating if it's worth the try..
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Great photos! It is nice to see more AC gals trying the caps. I guess the main thing to realize in using the caps is that your hair will not look like your pre-chemo hair. It will thin and look different. Everyone's outcome seems to be a little different. If you use the caps just keep the goal in mind....to have a full head of hair so you don't need a wig. The goal is not to keep your pre-chemo hair thickness and look. It is hard to watch your hair thin and it is stressful however despite that, if you are able to keep a lot of hair with the caps, once you are done with chemo new hair will start filling in the areas where you thinned and once you can get a cut and color you will look great - even if you have to go with shorter hair like I did after. I still never needed a wig and once I got my cut and color my hair looked great even though it was not my pre-chemo hair. You can stress while using caps through chemo, or you can stress for a year after while you wait for hair to grow back from nothing. I just figured I was already stressing about chemo so I might as well stress while using the caps at the same time than waiting for a year to have hair again after chemo without using the caps. Using the caps is a personal choice. There is no right answer and everyone has slightly different results. Just make the right decision for you. Best of luck to all our newbies and those that just started!!!0 -
I have been going back and forth. My hair is long and I have always worn it long and down. I cannot imagine myself with short hair, worse yet - with no hair. The problem is, that my hair is not very thick and I don't have that much of it, I just try to make it look like I do. My hair is dark too, so if I use cold caps and it thins during chemo, it might look not so great, a wig might be a better choice. But then, there is stressing that it might not grow back at all?
How often does it happen that the hair does not grow back?
Does it depend merely on the type of the drug, or on the particular person?
BB
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BB - taxotere is the drug that can cause permanent hair loss. I've seen figures of 3% to 6%. Looking at your stats, since you are early stage and HER2+ your MO might recomment weekly taxol + Herceptin, which my MO tells me is now the "standard of care" for early stage HER2+. If that ends up being your chemo regimen, the cold caps work very, very well. I barely shed any hair at all on my head, although I lost hair elsewhere. Have you gotten a recommendation from your MO yet?
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Hi Patin,
I'm scheduled to see my oncologist next week. When I saw him after my lumpectomy he didn't want to make any promises/decisions until final pathology from my mastectomy.
I will be hoping for the Taxol/Herceptin treatment.
Thank you for your message
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Taxol and Herceptin is weekly!?! Oh man, I thought I read somewhere it was monthly. Oh well...I guess if that's what the MO recommends...I choose life.
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BBwithBC45,
I've had two taxol/ herceptin treatments using PCC so far and so far so good. I get 80mg of taxol followed by herceptin once a week. I was very wary of the cold caps at first as I'd done chemo 25 years ago in my early 30s when there were no such things as cold caps. Back then I had CMF and my hair grew back afterwards just fine, as I have curly hair so nothing changed at all. My doctors at UCSF suggested the PCCs to me this time and even though I argued with them that they'd never work I have to admit it seems as if they do. They're definitely worth all the effort and trouble to try to keep ones hair.
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mdg, Thanks for the words of wisdom
I understand & I remember Warrior Woman mentioned believing each of us it somewhat predetermined to lose a certain amount of hair. I definitely agree....To be stressed now & end up with a thinned out pixie cut sometime soon is still better than stressing over having a shaved head & wearing a wig. Even if I wear a wig over a pixie cut, I still have a good start of hair...I hear it would take 4-6 months of growth to have that style...I'm really just accepting the inevitable pixie cut. My hair has always grown really fast, I can only hope it continues...Just not sure of the whole babying/coddling protocol for 4 months after, when so much is lost...I'll still be really careful, but not sure how careful I will need to be.0 -
@ Suladog: I'm also going to UCSF and my BS mentioned cold caps but didn't really go into detail because we to talking about something else. But she made it sound like it's offered routinely as part of the treatment there. Do you have to pay extra for it?
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Suladog - thank you for the info. I'll be interested to hear from you, how things are going, if you don't mind sharing.
My nurse navigator asked one of her patients, a cold caps user, to phone me and talk to me about her experiences. This lady was very kind to call me last night and answered a lot of my questions. She had a different drug regimen than I am hoping for, but she told me a lot about the ins and outs of using the cold caps.
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rleepac...I'm at Ucsf as well. It is not offered as part of treatment, a set of 14 caps rents for about $600/ month, but they are used to having lots of patients who use them, and have a freezer in two infusion rooms, and a freezer and staging freezer (for storage between treatments..a bit less cold) in a resource center where you can cold cap after your infusions. They make it as easy as they can for folks to use them, they even have a study coordinator who can move your caps upstairs for you before chemo, but in regards to using, putting them on, etc. the nurses can't help you, it's your thing (since they aren't FDA approved) my husband and I have our date nights on chemo days. It's our only chance away from the kids and he chaos every week. I'm actually going to miss getting a break each week. That sounds so sick! I'll miss chemo, haha
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Wow. Sounds like they have it all set up nicely. But I can't swing $600 a month even for one month, let alone 2 or more. Dang...I guess I'm going with 'bald is beautiful!'
Thanks for the info! I'm supposed to see the MO next Tue, PET scan on Wed and then?
How long after you saw the MO did they start your treatments? Did you have a port put in?
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rleepac, I couldn't afford it either. Tthere is a Cold Caps Assistance project where you can apply for help with cold cap costs: email patsy@ccaps.org. You can also buy Elastogels for less money. I wish there were more affordable options out there.
--edited to correct email address
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BBwithBC45,
I'm about to have my 3rd treatment this Friday and so far I haven't particularly lost any hair. The main issue is wondering how often I can wash my hair. My normally very dry curly hair has gotten a bit on the oily side which is weird but at least I have hair! When I had breast cancer 25 yrs ago in my 30s there were no cold caps. This time around, if one did not know I was having chemo, all one would think was, "wow, she really needs to get her roots done!"
My doctor at UCSF, Dr Essserman was the one who suggested the caps to me, and one of my mos , Dr. Park also suggested them and said they worked really well. Honestly I think they're so important that they should be covered by insurance fairly soon. It seems to be trending that way.
I'm having my chemo done up in the north bay where I live as it's closer to home than driving to SF once a week for the next 10 weeks of my Taxol/herceptin.
As for my port it was put in the week before my chemo started. I didn't want the port but after having 8 mis of chemo 25 years ago without a port they were putting in in my arms, my feet and practically my ass before I was done. The port is a lot more comfortable. Especially since after 3 mo if taxol/ herceptin, I'll be getting herceptin once every three weeks for the rest of the year. A port really makes sense of you're doing herceptin I'm small and they were really good about putting the port where it wouldn't show. Wear a bra or top to show the surgeon where you'd like it placed. It's what my mo told me and it worked out great.
Anyway I can help, I'm around to tell you how it's going on this end and answer any questions if I can. I am hoping to talk to other Taxol/herceptin people. From what I hear that protocol seems to work well with the PCCs , as it has so far with me.
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Suladog, I also took CMF for my first bout of cancer. It was a walk in the park compared to TC. I didn't lose my hair and worked all through it, whereas with TC I ended up continuing my disability from the mastectomy. Anyway, did you ever do any genetic testing since you've had cancer twice? I had it done the first time in 2000 (turned out negative for BRCA) but my oncologist wants me to have it done again since the tests can find more variations now.
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Suladog - I washed my hair twice a week on weekly taxol/herceptin. Usually 2 days before and 2 days after. Sometimes if it got too weird looking or if my head sweat too much at the gym I would just rinse it and let it air dry. My hair is not long enough to put in a ponytail but it looked amazingly "not bad" during treatment - seemed to have more body and a bit of a wave. It does get more dry as treatment goes on - you'll lose that oily feeling. Reading the taxol/herceptin thread, it seems that most people on this regimen don't really start losing their hair until after the 4th treatment. So if you're going to start shedding it will probably be in another couple weeks. But - my shedding was practically nonexistent, and I'm betting yours will be too.
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suladog - thank you! Very helpful information
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Leslienva,
Yes I've been genetically tested with every test so far for both breast and Ov. Cancer . I have no genetic connection they've found so far. My drs think its a result of my being exposed to radiation as an infant. I was given radiation treatment when I was about a year old in my chest area for literally no good reason and my drs at cedars sinai in LA and UCSF both seem to think it's a result of back scatter radiation. I'm the only cancer winner in my family
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rleepac no port for me...they didn't want to put it in while I was preg. Now only four to go and still doing okay w finding veins. I had to wait to start chemo until week 15.5 of preg I was Dx at 12 weeks. So someone else may be able to help w timeline
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Suladog,
Many thanks for the information.
My hair gets greasy fairly quickly and I wash it every day. I guess if I do decide on the cold caps, I will look like a need the shower every day! But like you said, I will still have hair, hopefully.
My doctor did not suggest cold caps to me, I was the one who asked about them. He said in my case he didn't see a reason why I should not try them, i.e. there are no medical contraindications. I'm really hoping I will have the same chemo regimen as you are. And I agree - insurance should cover it, I've read and heard that they were covered in Europe. First though they have to be approved by FDA.
I don't know about the port yet, I would imagine my oncologist will discuss this with me at my upcoming appointment on Tuesday.
In the meantime a couple of local ladies were very kind to talk to me about their experiences with cold caps too. Hopefully I will be able to make my decision shortly.
Thank you again!
BB
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Hello Ladies,
My name is Angie and I was diagnosed with Stage 3a breast cancer in January at the age of 43. The plan is chemo, bilateral mastectomy, followed by radiation. I started my chemo treatment yesterday: 4 rounds AC given every 2 weeks, followed by 12 weekly Taxol. I have spent over 15 hours going back through the old posts so I feel somewhat up to speed. I have taken tons of notes and have gotten lots of tips - so thankful!
I, too, have noticed not the best of success with PCC with ACT and even several members who stopped posting during their ACT treatment. I went ahead with the PCC and like previous poster, PatinMN, live in Minneapolis and was able to hire the wonderful PCC rep for my first treatment yesterday. MN Oncology, where I am being treated, is open to patients using the caps & has a freezer donated through the Rapunzel Project making things a little easier for the patient. Even though the odds aren't in my favor with this particular treatment, I would regret not trying to save my hair. It is thick, long and would take years to grow back. I plan to have the rep do my first 4 treatments to get me through the AC combo and then assess from there. It is nice to read the last few posts from the other gals doing AC/T. I will try to update as this process goes along...the good, the bad, and the ugly.
Bless you all!
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Hi, Angiel :-)
I wish you luck with the cold caps.
Nothing ventured, nothing gained!
Please keep us updated.
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Hi, again Angiel.
mdg made this statement on page 427:
If you use the caps just keep the goal in mind....to have a full head of hair so you don't need a wig. The goal is not to keep your pre-chemo hair thickness and look.
This is so true! I had Taxol first and lost very, very little hair. My hair looked the same as it did before the 4 Taxol treatments, so I thought for sure I was good to go.
Unfortuantely, though, after the 4 A/C treatments and surgery, I started to shed like crazy and my hair became very thin.
But, I do have full coverage. Which like mgd mentioned is really the goal.
Have a good night.
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