Life After Cold Caps: a place for ex-cold-cappers to share

pch

Angiel, no kidding. I think this calls for a party in the great Midwest … can you imagine the stories. We can take a whole floor at the Peninsula. Love you, ladies!

Alibeths, I took a flyer with regular hair color at just five months. But most of my gray is just sideburns and my Eddie Munster streak, so I just did a quick touchup there with regular Clairol for grays.

pch

Alibeths, I am five months PFC. I ended in the beginning of April. I think that's on the reservation though. And I've sort of broken the rules all along anyway. There just comes a point … right?

Alibeths

I hear ya! I can't wait to color my hair

BBwithBC45

Hi Ladies,

I just posted a bunch of photos on the Cold Caps thread. I'm very happy that I used the cold caps and I would recommend them in a heartbeat. However, I am still shedding. I haven't thinned much throughout the chemo, but started shedding more right after finishing Taxol. I have read through this thread from the beginning and I see that some Ladies were shedding up to 16 weeks PFC. This coming Tuesday I will be 16 weeks PFC and I don't want to be the one breaking records when it comes to the shedding. I've never had much hair and I don't have that much more to spare.

At this point I wonder if it is still chemo's fault, or maybe Tamoxifen took over on the hair front. I'm itching to go for a long overdue haircut, but I don't dare to go yet because I know when my stylist will comb my wet hair, a lot of it will come out.

I'm still hoping the shedding will stop abruptly as some Ladies reported on this thread.

Angiel

BB, I responded to you on the other board but for what it's worth, I think your hair looks amazing! I'm sure your shedding must be nearing the end by now at 16 weeks. I went from losing the amount you show in your post down to about 5 or so hairs in a matter of 3 days - and that was 2 weeks ago at 8 weeks PFC. I did one dry haircut at 4 weeks and I've colored my grays twice with Natural Instincts since I finished chemo to no ill effects. Hang in there!!

Wildflower2015

Just curious. Did anyone else start to experience hair regrowth while in the last cycle, or fresh out of chemo on the taxotere/cytoxan regimen? My hair thinned overall during treatment, and while there weren't any truly bald spots, there was noticeable thinning in some places on the crown where the caps must not have been in good enough contact. I seemed to shed the majority of hair somewhere between the first and second rounds of TC. I am now only 3 weeks PFC, and for the last week I've noticed the thinner spots are now covered with hundreds of tiny black specks which I assume are hair follicles. They get more obvious and seem to be spreading more every day. I can also feel tiny little stubble all over my head, mixed in with the longer hair. So it had to have started while I was still actively doing chemo. I thought that some ladies had regrowth on Taxol, but TC was too harsh. Not sure if I should post here, or on the life after cold caps thread, so I'll do both :-/

Alibeths

Angiel, I have asked you 100x, but i can't find it. What shampoo did you use? I know it starts with an O. : )

THANKS! Xo

Angiel

Alibeths, it is Oribe I use both their shampoo & conditioner and alternate between their Gold Lust, Moisture & Ultra Gentle lines.

Alibeths

thanks so much!!!

Leslienva

Here's the other side of the cold-capping coin. I really think that because I went back to work with hair, not sporting a bald look or a wig, my management team didn't realize how hard chemo was and that I should be working the same long hours as my coworkers. Yesterday when I expressed my health concerns over these hours, my supervisor said "Well, I have A-fib and I can do it." Crazy place to work!

BBwithBC45

Leslienva, wow! What a nasty comment from your supervisor. And you're right - because we don't look like we're about to die, it's difficult for others to realize what toll chemo took on us. I hear all the time how well I look, even though I don't feel so great.

pch

I had to beat people out of my house with a stick because I didn't look sick. And while I definitely preferred that to looking sick and feeling like I looked sick, it was sort of funny realizing that no one seemed to remember sometimes. But I'm lucky that freelancing I can run my schedule. Somebody on the threads told me I'd be surprised how long it took to feel well. And while I don't feel unwell, I think we have fewer reserves. Like that well doesn't run as deep as normal. And it's always a shock, isn't it. Leslienva, I hope you can find some balance in a regular workplace. I know it can be tough.

pch

Ladies,

I'm working with my local cancer center on a capping fact-finding panel to get some support for women here in Madison (after facing so much skepticism as their first capper). I just messaged Sebm9 for her checklist. If anyone has one of her own she'd like to share, that would be terrific. I'm also looking for your top shampoo/conditioner picks that follow PCC protocol. I feel we've all spent a ridiculous amount of time trying to find products that make the hair we're keeping look decent. Please PM me with your favorites. (But please don't include anything that's off the reservation re: PCC requirements. )

Thanks so much!

pch

BBwithBC45

Hi Ladies, I'm checking in. Today is exactly 5 months PFC for me. I still have plenty of my hair, but I am still shedding too. Each day I'm hoping this is the day that the shedding will abruptly stop, but no such luck yet. Since it's a long time since chemo, I'm not sure if the shedding is still chemo related. Maybe it's a combination of chemo and other factors? I had my thyroid hormones checked by another doctor for unrelated causes and the results were good.

I'm still washing my hair in cold water, still every 3-4 days. I'm using the same shampoo and conditioner as I did during chemo. Drying my hair with cold air only and using curling iron on the ends. I need a haircut badly, but I don't dare to go to the stylist yet, because I know she wouldn't be as gentle as I try to be. I'm afraid that half my hair would come out when she combs it wet.

pch

Hey BB, I'm still shedding a little too 6 months PFC. I generally shed a little more in fall and also, I have no estrogen now, which cannot be helping. But my hair's hanging in pretty well. Are you shedding gobs or like what might be a normal shedding pattern that you never noticed before?

Also, I think it would be fine for you to wash more often. It might be a good thing, as scalp buildup can clog the follicles, which is unhelpful. You can also get a dry cut from your stylist and just let her know to be super gentle. I've gotten four cuts since April, each time dry, each time my stylist was more gentle with me than I am with myself, and it was fine--even though I too am still shedding a little. It's ok to start normalizing your routine. It might actually help. Just my two cents.

BBwithBC45

Hi PCH. I'm pretty sure it is more shedding that before chemo, and definitely much more than during chemo. I don't think it's gobs, but my hair seems to be everywhere. And, no matter how gently I comb it in the morning, I get 50-100 hairs out. On wash days it's about 150.

I was wondering if maybe Tamoxifen could be the culprit, too.

I'm afraid to wash it more often for the fear of it coming out even more - the hair washing days are my stressful days.

I may call my stylist and ask her if she can do the dry cut. That's a good thought - thank you!

pch

BB, not pushing to wash more often, but that sounds like the cumulative amount of a more natural shedding pattern (more than normal maybe, but not alarmingly so). If you washed every other day, it would be more like normal shedding during a wash, which might lead to less anxiety. And remember, anxiety can cause hair to shed more. You might try the more frequent washing for a week or two and see what happens. If you shed that much with each wash for 1-2 weeks, you can always back off. It's worth a try anyway.Some women also shed the most after chemo. It's a mysterious process. If Tamoxifen is blocking estrogen (I'm not taking it so I don't know the SFX), then that may be contributing as well. Good luck and maybe try to change things up and see what happens. Hang in there!

sas-schatzi

Many here have donated . Thank you !........Wandering around and cheerleading again

Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs

https://community.breastcancer.org/forum/110/topic/834331?page=1

Link to the mainboard donation page

https://secure3.convio.net/bco/site/Donation2?df_i...

Warrior_Woman

Now that my hair is completely back to normal and looking great, I started on Aromasin. And guess what? 15% chance of alopecia. @#$%^&^%$#@$%^!!!!! I did not go through all this to lose hair to hormonal tx. I've only been on it for a couple weeks. Anyone have issues with it? I started using biotin and liquid silica again and switched my shampoo back to Nioxin.

Wildflower2015

WarriorWoman,

Just wondering, where did you get the 15% statistic from? I'm worried about this SE also. My onc is giving me the choice of either tamoxifem or an AI since I have a strong family history of osteoporosis and I am already moderately osteopenic. I asked him about this SE and he basically sidestepped the question. Doesn't tamoxifen also have alopecia as a side effect? Do you know the risk, percentage-wise, for tamox?

Warrior_Woman

Wildflower,

The insert from the pharmaceutical has all the data. I had to put my super duper strength glasses on to read the small print. Essentially, Aromasin has all the side effects of Tamoxifen and more. The percentage of people who lose hair and gain weight is higher with Aromasin than Tamoxifen. I did fine on Tamoxifen. Hot flashes was about it and I probably would have had those just from menopause. The hot flashes and sudden sweats are worse for me on Aromasin. So far that's all I've noticed but it's only been a few weeks. Joint pain is the biggie that most women experience with Aromasin. I take high doses of EFA so I hope it helps. I just don't want to turn into a fat baldy after all I've done to maintain my appearance.

Wildflower2015

WarriorWoman, Were yoy able to find the alopecia percentage on the pharma insert for the tamoxifen? I'm already leaning toward tamox rather than the AI's because of my high osteoporosis risk & the joint pain issues. If the alopecia risk is lower with tamox, that may factor into my final decision as well. Oh yeah, and the onc mentioned that the meds they give you to fight bone loss from AI's can cause jaw necrosis! Lovely!

Aussie-girl75

Warriorwoman can I ask you how long after chemo did it take for your hair to get back to its pre chemo state? Also I don't know how true this is but I was talking to a acquaintance who is a body builder and she told me she put herself on tamoxifen for 2 years (no judgement from me on whether is is healthy or not) because it's a estrogen blocker and it helped her to lose weight, she didn't have any complaints about hair thinning. I've been on it for about 6 weeks now my shedding although hasn't stopped it hasn't gotten any worse either if anything it's slowing down. The only side effects I'm finding is hot flushes and joint pain both of which I had before starting it.

sebm9

Warrior Woman, I was on Tamoxifen then anastrazol. I had absolutely no issues with hair loss or thinning on either drug; I just finished 5 years of combined treatment. [The only SE I had with anastrazol was bone pain about 2 weeks in, but I found that Claritin immediately alleviated it.] I just took the Breast Cancer Index test which shows that an additional five years of hormonal treatment will have no benefit, so I am now treatment-free for the first time in almost 6 years.

Susan

Aussie-girl75

Congrats Sebm9. It must feel fantastic to be finished with all treatment.😊

Warrior_Woman

Sebm9 - I hope to follow in your footsteps. Good for you!

Aussie - The length of my hair to my shoulders was back in about 15 months but it took a few more months for the luster and shine to come back. I was afraid it wouldn't...but it has. My hair is one of my nicer features and it's back to being long, shiny and healthy looking.

Wildflower - Tamoxifen has a lower alopecia rate by quite a few percentage points if I recall. It was on the insert but I didn't save it. However, my risk for recurrence is lower with Aromasin so I want to use it unless it become seriously problematic. Okay, jaw necrosis? Seriously? At some point medical professionals should just shut up. Read the Tylenol insert and suddenly the AIs are a walk in the park.

Wildflower2015

WarriorWoman, yeah, I could have done without hearing about the jaw rot myself! i found it more than a little disconcerting that he chose jaw necrosis to be the one side effect of biphosphenates worth mentioning to me. This, after he basically blew off my other questions about general side effects by saying the benefits outweighed the risks. He said if he had to put me on the biphosphenates that I would also have to get medical clearance from an oral specialist.

I've pretty much decided to go with tamoxifen at this point IF I do anything.

goldenpawsKim

Hey WarriorWoman! How are you? Long time, no chat. I'm trying to go back a few pages but can't figure out why you switched from Tamoxifen. I'm on it now .... hot flashes and joint pain but manageable. I hear you about hair loss with meds.... after all we've been through with cold capping and then you read that?! Ugh. Hope you're doing well. My hair is all back to normal (except for a few crazy hairs sticking out on top about 2 inches long) .... back to highlights, blow drying and straight iron Wahoo!!! It's been 8 months since last chemo treatment. Happy to look normal again. Thnx for all your advice. ♡ Kim

pch

Well that sounds so fine, Goldenpawskim, that I think we need to see some pics on Cold Caps Success stories. What do you think, ladies? Pics of Kim?

https://community.breastcancer.org/forum/6/topics/835766?page=1#idx_20

dancetrancer

pch, I agree! We'd love to see your success story there Kim! And you, too, Warrior Woman!

Cold Caps: Success Stories with Photos here!