Cold Caps Users Past and Present, to Save Hair
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I'm not sure what the oncotype test is?? Where are you being treated at? I'm having my surgery done at Johns Hopkins in Baltimore They never mentioned that. All they mentioned was hormone therapy.
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Also, is there anyway to preserve eyelashes and eyebrows?? I seen someone posted something about latisse...
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Lori, I am being treated in North Carolina. You won't get a final diagnosis on your type and stage of bc till they do the lymph node biopsy.My understanding has been if lymph nodes are involved, then you get chemo, period. I was including the bit about oncotype testing in case you didn't know it was out there. This test uses genetic information taken from a sample of your tumor to provide more information, and returns a score that can be used to both determine the chances of reoccurrence and whether or not chemo would be of benefit in case the tumor doesn't involve lymph nodes. In my case there was no node involvement, but the oncotype score was high enough to indicate that chemo would reduce my chances of reocurrence and also be effective against any random cells that might be floating around. Ask your doctor about it if your results end up hormone positive, node negative, early stage I or II. I think that's the only conditions where the test is appropriate.
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Beatit2015, cute hat! I would have totally worn it if I had one! I would love to feel like a princess on my last chemo day, but alas, I guess I will continue to look like a head injury victim!
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ok. I will ask. I guess I'm learning more and more everyday ... I did have the genetic test done for the BRAC 1 and 2
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Svetla,
yes my eyebrows and eyelashes (which were blonde anyway and barely visible even without cancer did fall out along with every other hair on my body. I'm very practiced at drawing on brows as I've been doing it since I was 15. otherwise mine would be nearly invisible so that wasn't too bad. Did miss my stubby little lashes though, now 3 mo post chemo it's all back, brows (which came back dark for some reason) lashes stubby as ever ,and I'm shaving under my arms again. Once more the rug matches the drapes....Before I used to say I had hardwood floors
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Ba ha ha ha ha ha. Sula!
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Beatit,
Wow! You are styling!!!! A princess indeed! Love that topper for your ice hat. I never bothered to wear make up to chemo, and also my oldest warmest clothes so when I started coming back just for herceptin all made up with hair everyone said how great I looked...just wanted to give them a contrast.
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yes, it's very possible your lashes may fall out.
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Svetla, after the first 10 minutes, you really don't feel the cold that much. I used a heating blanket, which helped, but overall the cold wasn't anything that would keep me from doing the cold caps. I had four TC treatments, but no one would know I had chemo. I lost some hair, but it was only noticeable to me. Definitely worth it!
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Lori45, are you getting your chemo at Johns Hopkins? One of my friends went there for chemo and they wouldn't allow her to cold cap.
BeatIt, love the crown! You're having the same chemo I did. You should do fine with the cold caps!
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Did any of you take B6 or L glutamine during taxol? Either or both. I was told to try 1000 mg of L glutamine, but how much B6? And did you feel it worked?
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jbandkb, the standard dose of l-glutamine to ward off neuropathy during chemo is 30 grams per day, which is WAY more than 1000 mg - like 30 times. Get the powder, and a heaping teaspoon is about 15 grams. Take that twice a day, mixed in a liquid of your choice (I used iced tea). B6 - 100 mg per day is the standard dose. I do think it helped me, but I didn't follow the chemo nurse's recommendation to keep taking it for a few weeks PFC, and ended up with a numb big toe.
Correction! Heaping tablespoon, not teaspoon, of the l-glutamine.
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Hi!! Just FYI, 400 of vitiman E helps too. I had 6 rounds of TC. NO NUEROPATHY!!!
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jbandkb,
I did 3 teaspoons of L Glutamine in water twice a day for 12 weeks and then for several weeks after..no neuropathy here either. I also too Vitamin d , Vitamin b and biotin. Now that ;s done with chemo and am on herceptin and arimidex, I take 4000 units of D daily on my MOs orders. I've read where taking D can ease or help avoid muscle pain etc. So far it seems to work for me, as I've had none of that
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Thank you everyone
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I take B6 every day since starting on taxol on request of my MO. Not sure the dose I have the bottle in the other room and I'm a little lazy, sorry.
I'll look when I take it tonight! B6 and Biotin every day.0 -
The photos and the personal experiences are really terrific! Thanks all for being so supportive of one another!
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I probably won't have it done at Johns Hopkins but if I end up having it, it will be something at a local hospital (I live in Ohio) it will be orders from Johns Hopkins. I know that my Dr at Hopkins said that they don't recommend the caps there
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If anyone cannot tolerate cold cap, and decide to go with a wig, this young lady (who herself is a cancer patient) has great recommendation for wigs to consider. The one she's wearing in this youtube video looks so natural on her. She's a great gal to share her experience.
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Hi ladies those of you with small kids. I have a 3 year old & 11 month old. My husband is in the police academy in our area from 12-10pm. They told him if he takes anytime he will be let go. We recently moved so family is back home. How have you delt with SE & taking care of your kids basically alone. My family doesn't seem to be available to come help so they say. We don't have money for a nanny or anything like that.
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I'm about to throw in the towel on this whole cold capping thing
I have two more months of taxol (8 treatments) and I don't know what to do. Pretty sure I'm in the 50% that did AC and this doesn't work for. What I don't get is why it took until this week for me to shed this bad. I've been constantly shedding but it just hasn't stopped. Ever. I was all happy two weeks ago when I posted my progress but it's been horrible since.
This is after washing my hair and it air dried just now. I don't think all the toppik in the world can help this and I def don't think it's going to last 8 more weeks.
I don't know what to do!! help!
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Jbandkb, first - stay strong with a positive attitude. You will get through this. Rest when your body needs it and then on days when you can, prepare for your down days. It will be tough, but it is manageable. My kids are older and school aged, so they didn't require as much supervision. On your down days, keep it simple....don't worry about getting your kids dressed - have PJ day and watch cartoons or whatever simple activities you can manage. Make sure you have simple foods on hand. I made freezer meals on my off-AC week to reheat during my down times. Hopefully, your husband - even though he's working long hours - can help support you where you need it during the next few months. Even if it's picking up the groceries, giving the kids their baths or doing laundry....all of those little chores will help. It's not forever, just inconvenient for the next few months and may stretch you both thin.
StefLove, I am SO saddened by your post!! You have been doing so well, I can't believe it either! I started shedding REALLY heavy with about 1 month left on Taxol. Someone told me it was probably still the effects of the AC since the people who only get Taxol generally have good results. It's still possible that your shedding will slow as the AC makes it completely out of your body. Can you try changing your part? Make a deep side part & see if the coverage is a little better. My initial part really thinned out and I found that by switching it every week made it look a lot better. I feel your frustration, I really do but you've come so far. I still think having some hair by the end would be easier than starting over with nothing. Even if you continue thinning, I would think you could wear a topper piece when you finish instead of needing a wig. Do you have new growth coming in? Mine started growing on Taxol. If so, you may want to keep capping just to protect those new hairs. I know it's your decision and it's hard, good luck with whatever you choose. PM me if I can be of any help.
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Maybe try switching your part?
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Guys, I'm still learning - so is AC supposed to be worse for cold capping than TC (taxotere/cytoxin)? I'm done with 3 of 4 TC treatments and hoping for good results.
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eyebrows/eyelashes - no Latisse doesn't help them NOT fall out. My friend is a medical director at Allergan Opthalmology - she said in fact it stimulates the follicle. Chemo targets fast replicating cells. Save your money and use Latisse after you finish chemo. I lost all but 2 eyelashes about 1 month after chemo and about 1/2-2/3 of my eyebrows. It took about 1-2 to grow back.
Glutamine- I bought the powder b/c like someone posted your need @30g... I put it in my yogurt in the morning...yuck!
Good luck everyone...the caps work...just manage our expectations. I lost 30-35% of my hair....about 20-25% after chemo stoppped. But I have hair...and was able to use extensions for my wedding 3 Weeks ago. Capping is a tough ride, but the alternative is a lot worse!!
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Steflove, I really feel for you. I think angiel's advice is spot on. If you adjust your expectations to being able to grow hair sooner on Taxol than others would, maybe it would be worth continuing the capping? I really don't know - I know it is a big expense and the cold is rough, and you have 8 treatments left to go through. Keep in mind that in the end, I believe you would still be ahead of others who did not cold cap on your regimen. You will have to decide if it is worth it to you - we support you no matter what you decide! Hugs!
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StefLove, you have a tough decision to make. We've seen some good results from women on AC lately, but I've seen quite a few in the past two years who had results similar to yours or worse, despite doing everything right. AC is just a lot tougher on hair than some other chemo regimens. I'm assuming it's only your scalp that is so thin- does the rest of your hair look OK? If so, maybe try a hair topper like some others here have suggested and yes, if you decide to stop cold capping we support you.
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....just want to give my two cents to the above post regarding Latisse - bear in mind I had AC plus Taxol (5 months of infusions) not CT .....I started using it consistently after my Dx. I have only lost 20% of my brows after applying Latisse daily. Currently, I am missing my bottom lashes - for the third time through this ordeal. I am 5 weeks PFC and I have almost all of my brows as well as 50% of my upper lashes. Both of my lower lashes are missing about 80%-90%. Maybe this is a case by case basis but I am happy to use Latissse and have these results. I was never without brows or lashes throughout this ordeal.
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Hi, my last treatment of TC was June 8th. I used latisse starting one week before my first treatment. I am happy to say I kept 60-70 percent of my eyelashes and brows up to this point I am not sure when the ones I lost will regrow, but I'll take it!!! For me worth every penny!! Between that and the cold caps, I would not have been able to be the person I am today!! No one knew I was "sick" through my daughters school year and vigorous cheer schedule!! I highly recommend doing anything you can at all throughout the process if you are able to financially. Good luck to all!!
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