Cold Caps Users Past and Present, to Save Hair
Comments
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Diove, no reason for concern. It's not unusual to continue shedding for several months PFC, mine continued for about 4 months. It will stop, promise!
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Jennliza, you've been through a lot. I'm sorry your port caused so much trouble - what started the problems? I want to reassure you about weekly taxol. When I was getting treatment, I asked my onc if the weekly dose was one-third of the tri-weekly dose. He said no - weekly dose is MORE than one-third of the tri-weekly dose. He said multiplying the weekly dose times 3 would be toxic. He also said that outcomes with weekly taxol are better than tri-weekly, probably since you end up getting more chemo over the treatment period. I assume this applies to taxotere as well, so I think your 3 treatments of taxol will give you more chemo than one taxotere treatment.
More recently my onc told me that weekly taxol + herceptin has now become "standard of care" for early stage HER2+ breast cancer treatment. The research results published earlier this year were very, very good for that treatment regime. Since you're stage 1a, I think you will do great! Also, side effects of weekly taxol vary from person to person, but generally are much milder than other chemos. I had very few problems.
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FL_Sunshine - look at you! You look absolutely radiant! So happy for you to be done with chemo WITH you hair! Whoop-whoop!
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jennliza - did your port get infected? Sounds terrible! 12+ days in the hospital is a LONG time. I feel for you! I had the unusual complication of partial lung collapse when my port was inserted. Not fun!
I agree with PatinMN. For small HER2+ the latest clinical trials showed Taxol only with Herceptin to be effective in preventing recurrence, and since it is less risky, it is the treatment of choice. I wish it had been allowed when I was getting chemo, but my onc said the trial data was not in yet, so I was stuck with TCH for a tiny tumor. I only did 4 treatments since it was so small, but it did suck. The trial data has since come out favorably about Taxol only. Try to trust in that data and in your onc's modified plan for you.
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thanks everyone for the support!! yes I did lose a lot of hair (more than half)... but I'm the only one who can tell. My last infusion was probably the easiest one and I actually changed all of my caps myself with no help except getting them out of the coolers. I guess I became an expert lol.0 -
FLSunshine - Impressive! You are amazing! Best wishes as you go forward.
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Jennliza- We're glad your back we've missed your posts! You have been through so much-I wish you a nothing but a smooth road ahead! As far as the chemo decision, I cant offer any advice, yet another decision we have to make when we are so worn right? Wishing you peace of mind...
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fl sunshine, you look lovely. Love that smile!
Showed my husband your photos. He mentioned that it is helpful to see how different people put on the caps. We note how you used a gold strap wrapped around, too.
If others are willing, will you consider posting photos with the cap on?
I have a big head, and we note how in the good ol' demo video, the patient has a very petite head, and she is using a cap that is not frozen.
Seeing others would be helpful and encouraging. I welcome any and all help from you fellow Cappers.
Thanks, Jeni
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Hi Jeni! I have a big head too, so I totally understand
Here is a picture of me with the cap on. I hope everything is going well!
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Jeni, here is a pic of me with the cap on.
My entire cold caps album is here for you to browse if you like.
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jennliza- that is tough! Sending prayers your way
Fl_sunsihne- you're a soldier! It feels great to be done
Jc254- okay great- I've read people shed up to four months after chemo. But still makes me nervous.
JeniferE- I wish I had a photo for you my head is big as well and caps worked
Ladies My hair is naturally curly and thick and I get more tangles now than ever. Never had to deal with tangles - anybody know a great product that seems to work great? I have not your mothers knotty too nice but I'm not too crazy about it
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Love seeing all the pictures......I have some on my blog of me. I also don't have it on my blog, but I do have a video of my husband getting my cap on me. I don't want to post it because I am not sure the oncology office where I did chemo would approve. The nurse is in there a bit too so out of respect I will share it via email but not on the blog. If any newbies need to see, give me your email by PM and I can get it to you. It shows how my DH did the straps on my head too.For those that asked about shedding....I had shedding for about 4 months. I kept thinking at that rate I would be bald but I wasn't. Have faith. The goal is to have coverage....not look beautiful. Not have flowing, stunning hair. Not to have the hair you had before chemo. The goal is coverage, no wig and to look "normal" to others while going through the crappiest journey in your life. Have faith......keep your eye on the goal! Hugs to all!
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mdg - thank you for reminding me of the goal. I've been discouraged by the amount of hair coming out every day. Just had 2nd chemo two days ago. It's been shedding alot since last Sunday. Looks like already lost 20+% and I have 4 more infusions to go. Today is my hair washing day after chemo. Nervous...
Dlove72 - I have curly hair too. I sprayed water on the end and apply argon oil when i hand comb my hair to detangle. Still lose some hair though...
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Hockey cat, you will be fine. You are at the point of heaviest shedding right now, just around your second chemo. It should settle down soon. I would shed a bit more after each infusion, then it would settle into a slower pattern of shedding. Nerve wracking, but you won't lose it all.
I thought I was losing a great deal more than I actually did. However, from my avatar taken a month after chemo ended, you can see that I kept my hair. I continued to shed another three months for a total of 16 weeks after my last chemo, then my shedding stopped overnight. I didn't shed a hair for many months after that.
Meanwhile all of the hairs I lost began to regrow after their normal dormant cycle. I began to see that new growth about two months after my last chemo. You will too.
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Hortense, thank you for the reassurance. It is nerve wracking while I'm dealing with all the SEs. I'll stay positive and continue on this tough journey.
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dlove72 have you tried heavier conditioner and combing with the wet brush before you rinse? I have long wavy fine hair that is super knot prone I use Macadamia Nut Oil deep treatment and the gently comb with my finger first, then use the wet brush in the shower before I rinse. Then I don't touch it again after rinsed. I use Alterna caviar spray conditioner but it's the heavy conditioner in the shower doing the most work
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thanks for the photos, Dancetrancer and Daye. We appreciate seeing such different and beautiful heads!
Jeni E
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FL_Sunshine - Hoot hoot! I remember when you started. Yippeee!
I'd post my cap pic but I'm flashing my middle finger and I don't want to be rude to you fine people.
I am on Tamoxifen and my hair seems to be growing back the same as it was before only curlier. I would go with whatever treatment will best reduce the risk of recurrence rather than the hair issue.
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I had my 4th taxol infusion - 8 to go. I washed my hair last night and noticed a lot of hair fall today. It probably is normal for a once a week wash but I started to get scared. This week I really started to feel the chemo SEs - mostly just fatigue, headache, bone pain and what felt like the worst menstrual cramps ever recorded in history. Yesterday was the first day I needed help with the baby when I hit the wall. I guess it's going to get worse from here and I can complain in fatigue and cramping are my worst SEs (and the bloody nose thing) I haven't noticed any other hair falling out yet. Any other taxol only ladies have an opinion as to hair shedding - when to look for it to know if caps are working?
Also, I'm not icing fingers and toes - just using nail hardener. Are you supposed to paint them black, too? Do you need to keep the black polish on all the time or just during infusion? I would think all the time but I read something that seemed contradictory. Hope everyone is well.
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DaniellaD- congrats on reaching the halfway point!
I used black polish for the first treatment only. From what I read, it seemed like it was kept on just during the infusion. I kept it on the whole time for that treatment though.
I didn't use the black polish anyone after that one chemo treatment. I wasn't really sure what the rationale behind it was.. One post I had read said that the taxotere was activated by light and so was kept in a black bag before use, but I couldn't find anything confirming that and didn't notice the black bag when my nurse was giving me my chemo. However, I did use nail hardener and iced my fingers and toes. No nail problems for me.
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Hi Daniella- Sorry to hear those SE are starting to kick in--I'm glad u have support to help with the little one:) I read from another poster that one should paint nails black day of infusion and take it off next day and apply nail hardener each day for one week. That's what I've been doing as well as icing fingers and toes day of infusion. So far so good, I have noticed my nails are weaker and no matter how much I file them they are rough at edges, but no major issues.
As you know I'm not a Taxol gal- but can relate to the anticipation of the 'big shed' I hope someone here can ease you fears:)
Half way done!!!! WOOT WOOT!!!
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hi ladies,
My last chemo was Friday! Woo-hoo!! Can't wait to pack these caps up and send them back to PCC!
So excited to be able to look forward to normal hair washes soon...and a haircut. I REALLY need a haircut. Anyone have any advice on when I can (a) wash under the shower head (so tired of the jug!) and (b) have a haircut?
On nails, I did nothing - no icing, painting, etc. they stayed strong and actually grew a lot. I have one or two with a grayish tinge, but that's about it.
Hang tight cappers!! End in sight!!!
Rain
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Daniella, I think the best source of information on taxol shedding would be in the "taxol and herceptin only" thread. From what I've read there it seems like real shedding doesn't start until treatment #4 or later. I really didn't shed to speak of throughout all my 12 taxols - yeah, there were some washes where it seemed like more hair came out than usual, but considering I was only washing twice a week, it was barely more than normal. But I may be abnormal!
I didn't do anything special for my nails, and they remained perfectly normal throughout.i know that's not always the case with taxol though. I did start having horrible nail problems once I started tamoxifen - thin, breaking, splitting, you name it. I went off tamoxifen (my onc didn't think I needed it because my tumor was so small, he thought the herceptin was the prime cancer killer, and my ER percentage was only 26%) and my nails improved almost immediately.
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PatinMN - I think it's probably just the normal amount but that I'm washing only once a week it seems like a lot.
Barremom - I read the same thing about the black polish and thought it was strange that you would only need them black the day of treatment. I use tea tree oil on my cuticles morning and night, too.
Rain dew - congrats on finishing!! Can't wait until I can say the same.
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From 5 years ago. I did the black nail polish before every TCH. Took it off the next day and I did not have any nail problems...
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This update has been a long time in coming. It’s taken me a
couple of weeks for me to be able to write it but I wanted to let everyone know
what was going on with my hair and the cold caps. Unfortunately, I had to give
up using them a couple of weeks ago. It reached the point where I could no
longer try to hide all of the bald areas on my head and I knew I had to start
wearing my wig to work. I had just finished my last of 4 AC tx’s. I had been
losing at least 1000 hairs a day for well over a month with no end in sight. I
cried every single morning when I combed my hair and looked at the pile that
was left behind. I had no hair above either of my ears, going up at least 4
inches on both sides, a part that was well over an inch wide, and barely any
hair from my crown down to the nape of my neck. I was using the tiniest
barrette I had to hold my hair together in the back of my head so my falling
hair wouldn’t be all over my back and would cover some of the bald spots.Once I decided to stop using the caps, I went back to the
wig store and had the hairdresser there thin out my wig a bit more and I also
let her wash and cut my hair shorter than shoulder length (it used to be to my
bra strap). Sooo much fell out when she washed it (had maybe 20% left), but it felt
so good to get my head scrubbed finally. My hair looked terrible, but I wasn’t
ready to cut it all off yet – I needed to sit with it for a week or two.Somehow, I have managed to come to terms with all of this. I
wanted the caps to work so badly and I couldn’t imagine how I could go on if
they didn’t. I was absolutely obsessed with my hair and the caps – I spent
practically every waking moment thinking about my hair or crying about my hair.
When it finally got to the point when I had to admit that the caps were not
going to work for me, it still took many days to accept. I’m happy to say,
though, that I have finally accepted that my hair is mostly gone. I’ve had 2
Taxol tx now (out of 12), and it has actually started growing back. I’m not
confident it won’t fall out all over again, but that’s OK. I ended up trimming
my hair down to about 5/8” a few days ago, and even today, I had to admit that
I actually look kind of cute with a “crew cut.”What I want to leave you all with is that I still believe
that caps work. Almost all of you are living proof. I’ve talked to and read
about many AC ladies who the caps worked for, they just didn’t happen to work
for me. I have no regrets – I would have regretted not trying. The good news is
that, if they don’t work for you, please believe that it is possible to go on
without your hair. It’s not the outcome
I anticipated, and I’m sad to think how long it will take to grow my hair back
to how I loved it, but now I can focus on other things, like handling the chemo SEs, and getting back to
the healthy eating and exercise that kind of went by the wayside when I was
obsessing about my hair and crying every day.I will definitely continue to follow everyone’s progress
here and I wish you all the best!Kelly
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Dear Kelly- What a beautiful and courageous post. I'm crying as I type this. What a journey we all all on with BC and then cold capping. I understand the stress you describe of waking up everyday and obsessing over your hair, wondering if this will work. I applaud you for knowing when it was time to close the chapter of your cold capping endeavors . After all the time and effort I'm sure it was heartbreaking. Bless you ~
THANK YOU- so much for sharing your journey with us! Your posting will provide countless other cold cappers extremely valuable information.
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Oooohhhh Kelly, I am so sorry you had to go through such stress and sorrow. You were gutsy to keep trying and very generous to post your experience on here. I wish cold caps had worked for you, I really do.
I have read that AC is a very harsh regimen and that cold caps are not always successful with it. You were brave to try. I hope now that you have cut your hair short that you will be able to see it regrow rapidly and that you can concentrate on managing your side effects.
I was surprised, as each month passed after I finished chemo, that I felt exponentially better than the month before. Exercise helps a lot as does eating well, just start slowly with exercising and work your way up. There were days I would go to the gym, change into gym clothes, then realize I could do no more, that I truly did not have the strength to go into the gym itself. Your body is going through a lot now. Take good care of it.
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Kelly
While I'm sorry the caps weren't a success for you, I feel better knowing that you are in a more peaceful state of mind now that you aren't worried about the hair. You are a true warrior for preservering through this journey no matter the outcome. Plus, you saved your hair follicles from the harshest toxicity of the AC. Your hair is going to grow back full and luscious. You are beautiful now and always.
Taxol SEs are manageable. I had my 4th infusion and it hasn't been too bad. My thoughts and prayers are with you and all my sisters in caps. Xoxo
P.S. Thanks Ang for the pics and information. I'll paint them before the next infusion.
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so sorry to hear about your difficult and emotional journey so far, Kelly. I am a few weeks behind you, going for AC 3 this Wed. The cold caps are a hassle, and my BS gave people in this regimen 50/50, so really the only way we know is if we try. Now that you tried, and as you make peace with it, I wonder if you may feel better. Before I started chemo, part of me just wanted to grab the clippers and get it over with instead of waiting and debating--the "will it/won't it" work back and forth. It must have been just awful to feel like you were swimming upstream every day, counting and hoping the shedding would stop. Excruciating. Please keep us posted on how the taxol regimen is going, as I'll be starting that six weeks from now. Good luck and hugs, hugs, hugs!
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