Cold Caps Users Past and Present, to Save Hair
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I have not done the Taxol regimen (did TCH), but here is what I have heard from others on the board:
- hair loss does not appear to be as severe with Taxol - I've heard some (who have not done caps) say that their hair started growing back while on Taxol...not sure how much hair those who did Taxol only without caps actually lose - would be something for you to research
- I know Taxotere is bad for the nails, but not sure about taxol.
- Taxol is known to have higher risk of neuropathy than Taxotere. Icing fingers/toes has not been shown to affect this - the icing is for nail issues only. But just watch your symptoms and if you get neuropathy be sure to let your onc know so they can consider adjusting your dosage. Neuropathy can be reversible, but some are also left with permanent side effects, so it is something to pay attention to if it happens, and discuss with your onc.
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thanks dancetrance! I'm already taking b6 and L-Glutamine because I understand it takes some time for the Glutamine to get into your system to be effective (that may be only for those using it for body building but that is what I was told by a nutritional supplement guy). I hope it works out well.
I'm just glad that I trusted my gut that said do not trust this local doctor. Granted tch x6 would have been fine but the fact that the dr and her team failed to accurately read the path report is beyond disconcerting. I only went to the local dr because it was taking so long to get in to see the Sloan dr and I wanted to hear some opinion, any opinion to ease my anxiety. Feeling much less anxious today. Thank you all!
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I understand about path reports being screwed up...found out 4 months after surgery that it wasn't just DCIS. Had a small IDC that was HER2+. Missed by several pathologists. That was a surprise indeed. Gah!
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I'm so glad you found an onc you are comfortable with Daniella!
I'm on weekly Taxol and it was a last-minute change for me as well. I pushed for extra scans after I was diagnosed and found liver and spine mets and my chemo changed the day before I started. I just had my second Taxol yesterday and the side effects are not as bad as others (they tell me). I've also recently seen on this thread that fasting helps with the hair loss and SEs. I tried that for yesterday's chemo and I'm waiting to see if the side effects I had (D, headaches and bodyaches) are less this time.
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harrysmom - so glad you pushed for more scans. You have to trust your own instinct. Every step of this process has been based on what my gut instinct - from the very beginning when my doctor told me the lump was probably a plugged milk duct and I insisted on a mammo and ultrasound. Then after that when my local radiologist saw only one lump (the palpable one I complained of) and wanted to biopsy- my gut said get second opinion from Sloan and get biopsy there. Turned out there was an intra mammary node on the tail of the palpable tumor! You really have to be your own advocate, listen to what the doctors say but question everything and decide for yourself.
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Hi cappers,,
Any of you on taxotere, herceptin, perjeta regimen for chemo infusion? I start tomorrow. My chemo is before surgery. I know taxotere can cause neuropathy.
Anyone out there have a story to share? I love success stories, but will take any story. Thanks,
Jeni
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Jenifer, I didn't have your same chemo regimen but just wanted to wish you luck tomorrow. You should have good results with your chemo cocktail. I hope you practiced with the caps out of your home freezer and remember to take a pain reliever before you start tomorrow. That first cap is really cold but after about ten minutes it gets better. I promise
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jenifer- I just finished tch+p on weds. If you look through the thread, you can see my hair as it currently looks. I have hair! Thinner, dryer and WAY grayer (lol) but it's there.
One tip I'd give you, is count perjeta as chemo. There are studies that show it CAN cause hair loss. I wasn't going to take the chance of losing hair to perjeta after all the work in saving it. I had my infusion run as taxo, carbo, perjeta and then herceptin. Cut down on my post chemo cap time just a bit as well. It's a long day of caps, but 100% worth it!
If you screw something up a little, don't let it derail you. We all make mistakes and we all have hair.
Ask questions! Good luck to you
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good luck Jennifer! I'm on tc and have my fourth cycle coming up and still have a full, albeit thinned, head of hair using cold caps. Hope this helps.
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Thank you everyone! I am practicing with my husband, using the extra frozen strap for the nape of my neck. I have a big head and lots of hair. so it is difficult to really get all of the scalp covered. Will be harder with the stiffer REALLY frozen caps. Will report back and surely ask for more advice.
Somewhere someone posted the way to label a the keep boxes and pack them ih the two ice cube coolers. Can someone re-post that for me? I thought I printed it but did not. Thanks - Jenifer
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I had no neuropathy from wicked Taxotere and I kept my hair! Hang in there Jeni!!!
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Hi Jennifer--I just finished my 5th treatment of TCH+P. Still have my hair---thin and grey, but no nail issues--taking biotin and glutamine too. Icing nails and toes, also eating popsicles or ice, but that doesn't seem to do anything for my taste mouth issues. No sores tho, so that's good. Just funny feeling on tongue and very strange tastes, as everyone seems to find. I was in your position not long ago---it seems a way away, but you will get thru this!! My last treatment is Spet. 11 and it can't come soon enough. the girls on this board have been so helpful (although I'm not on here a lot), but just reading their stories and getting their input has helped a lot.
Wishing you well and good luck with the caps--they are a pain, but so worth it!!
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JeniferE - I am on TCH...no perjeta. I havent had Neuropathy....I am taking L-Carnitine powder. There is a study using 30g/day that showed that it helped reduce incidents with neuropathy with chemo. I take @10g/day.
Get masking tape....on each box put a piece and label them 1-8. Do the same with the cooler....label 1 and 2.
Caps 1 - 4 are bottom caps and 5 - 8 are 2nd row caps. Put dry ice on bottom of cooler 1 then caps 1 & 2, then dry ice again, then caps 5& 6...then dry ice on top. In the spaces around the caps we placed the pellets of dry ice (in bags). We cover the top with a towel and close lid. Do the same with caps 3,4,7,8 in cooler 2.
So when you apply caps 1...you will be removing cap 5 to get cap 1.. And you will remove cap 5 again when you are replacing cap 1 after use.
It sounds complicated but its not!!! We thought we messed up with treatment 1....but here I am about to start treatment 3...with most of my hair....no on thinks Ive lost hair, but I have. We all lose hair...non chemo people....just they have hair growing to replace the lost hair...we dont. So eventually towards the end I think it will be more apparent....
Good luck and I am sure all will go well....and you will have at least 70% of your hair when your done. And lucky you that you have soooo much hair to start with!!!!
-Jennifer
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I love your before an after pictures. I opted to not get the cold caps... I will probably regret it.
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Thank you! Almost done here at the infusion center, then home for a few more caps. Appreciate the help, Jennifer.
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I'm cold capping and today, the day after my first oh so gentle wash (with hubby washing my hair like we were in Out of Africa) it is starting to itch a bit. Wondering if this is the beginning? It felt so good to finally wash my hair after five days. What was once a chore is now a luxury. How many other things along the path will change like that? Used my new latisse on brows and lashes last night. We'll see how that goes too.
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I'm using latisse and also using a little castor oil on brows and lashes. I don't think it's counterproductive. I wait until the latisse dries And then line with oil and scrub it into my brows. I even comb some onto my lashes for conditioning. Can't hurt.
Anyone try Giovanni leave in? Trying to find a serious leave in for my long fine wavy hair that knots easily. I don't think Kenra is going to cut it for me. When I use macadamia nut hair mask, my hair I pretty slippery so maybe not for after shower but before shower when I precomb to get loose hair out of the mess.
Trying to get ready...it's so much to remember. I need to create a chest sheet for my helpers in case I'm a little woozy. Has anyone already made one. Thanks!
Jennifer- thank you for the packing tips!
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14 Cold Caps arrived today! Need to clean up our freezer, hope they all fit inside... How did everyone bring the caps to the hospital? They are pretty heavy too, so I guess I need to buy a cooler with wheel, or maybe two?
My first infusion is next Wednesday.... Can anyone recommend shampoo I can use during the treatment with cold caps? I tried SLS free Burt's Bee Super Shiny Mango Shampoo but I don't like it much. Thinking about trying Organix or DermOrganic next.
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hockeycat - why did you get 14 caps? You only need 8? The caps re- freeze by the time you use them again? I would not be able to cold cap at my hospital with 4 coolers...there is barely enough for 2 coolers in my infusion room. Unless there is something different about your chemo...I would say return the 6 of your caps.. If you are concerned about re freezing just get more dry ice...not more caps.
Daniella - I have Beauty without cruelty Leave in...it's SLS, paraben free. I used it 2x...it worked well...but it's a cream not a spray. I don't feel I need it...but it works.
Anyone use Latisse while cold capping and not lose eyebrows/lashes? My best friend is an ophthalmologist and a medical director at Allergan who makes Latisse. She said not to bother using it while doing chemo... That Latisse makes your hair grow faster...i.e make them rapidly replicate...which is how chemo works. It goes after rapidly replicating cells and kills them. She said to use it post chemo.
I was using rapid lash...and was losing eyebrows and some lashes so stopped. My eyelashes seem to be holding up better than my eyebrows...
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PCC rep told me I need to get 14 caps because I use the freezer at the hospital. She said I cannot put used one back into the hospital freezer....
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hockey cat, that's interesting. I had use of a hospital freezer as well, and didn't have to haul caps back and forth - they were stored in the freezer. My helpers cleaned each cap thoroughly after use and stacked them in a corner until we were done; then put them all back in the freezer. There were two sets of caps in the freezer, so in case some weren't cold enough we could try others - and that happened a few times. The hospital freezer isn't as cold as dry ice, so the caps wouldn't refreeze in time for a second use.
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Since I haven't seen it mentioned in a while, I thought I would tell anyone reading through this thread, who might be trying to make decision about whether to cap or not, that there is a website and a Facebook page devoted to chemotherapy caused permanent hair loss called Taxotears.
On looking the website up a moment ago it seems to have been renamed A head of our Time. It is run by people who did not use cold caps and whose hair unfortunately did not come back after chemo ended, or whose hair is now very sparse. I have never wanted to visit it as I know it is full of sadness. I have seen it mentioned by ladies in other threads who suffered permanent hair loss.
I chose to use cold caps and was able to keep my hair. I am very grateful that I discovered them in time. I switched hospitals and doctors, and delayed my chemo start date by about a week, in order to use them. Not going bald was worth the effort to me.
From "A head of our Time":
Are you still bald after chemo? Are you hiding under a baseball cap long after your hair was supposed to grow back? Are your doctors perplexed? If so, you may be one of a growing number of people around the world who have experienced persistent chemo-induced alopecia, or hair loss.
According to Sanofi-Aventis, manufacturer of the chemotherapy drug Taxotere—used to treat breast, lung, gastric, head and neck and prostate cancer—3% of patients administered the drug could experience long-term alopecia. This figure could rise to as high as 6.3% when given in combination with the drugs Adriamycin (doxorubicin)and Cyclophosphamide, according to a study by the Rocky Mountain Cancer Centers in Colorado.
“Such an emotionally devastating long-term toxicity from this combination must be taken into account when deciding on adjuvant chemotherapy programs in women who likely will be cured of their breast cancer,” the study concludes.
Despite this recommendation, patients—are not being informed of this potentially disfiguring side effect.
A Head of Our Time is a world-wide organization of cancer patients who have banded together to share emotional support, compare medical research and educate our health care providers. If you are tired of the stares and the dismissive suggestions to “wear a wig”, you will find understanding and, indeed, empowerment among us.
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Just received my caps. THey also came with gel strips. I don' t know how to use them. Can someone explain where they go?
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I too ordered 14 caps. I only had to reuse one for the last cap, as I go 4.5 hours after infusion as well. My hospital has two different freezers, one is a staging freezer, just like your home freezer, to get the caps cold from room temp. Then we have a deep freezer, set at -45 F. You don't want to put room temp caps in the deep freezer, since that would raise the temp of the freezer and other people's caps too much. The ones I use go back in the staging freezer, except for cap number one, which I put back in the deep freezer to use as the last, or 15th cap. The gel bands are to give you more coldness around the hairline, I only ordered four, since they re freeze in about one hour. First, put the cap on, then put the gel headband on around your hairline, then use the elastic Velcro straps to secure both cap and headband extra tight. It helps to practice a bit beforehand. I found that the frozen caps (just in my home freezer) were easier to practice with than the room temp ones. The gel at room temp seems to be " bigger" than when it was frozen. We used a rolling pin to move the deep freeze gel around and into the seams before putting it on, and got my capper buddy good leather work gloves to help push the gel around too. He was tired after the whole 8.5 hour day, and a little sore in his hands and wrists. Hope this helps.
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We hired a helper on the first day. She is bringing some dry ice. She is going to train my husband who is willing to take over that duty from the second round, We'll see how things go.
PatinMN, I guess it depends on the hospital. I talked to the patient navigator today, she said I can leave them if there are enough spaces, but if other people doing the caps, we need to share the space. Since my treatment is very 3 weeks, I should take them back home....
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Hi ladies,
How long did it take to read the temperature on your infrared thermometer? I may be holding it too long and the temp changes.
Is it just a point and shoot thing? Or is it a few seconds of aiming?
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Ahhh...interesting...didn't know with freezer usage you needed 14.
And to second gatomal...the gel band go from lower back of the gel cap where it ends to above your ears and fastens in too of your head. It helps add coldness to areas that aren't well covered and tighten the caps. Also use the Velcro to tighten the caps...
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Gatomal, my husband/capper was tired too. He worked so hard! I like the idea of a rolling pin. Will add that to our arsenal next treatment.
Thanks, JeniferL
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SueBe - we hold it for a few seconds about 6-10 inches above and take the temp in various spot...hoping that the warmest is colder than -32. On average when good and cold they range from -32 - -40. A couple once were only -25....and I still have prob 93% of my hair. Today is treatment #3. Caps are packed in the coolers!
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Tips for packing your freezer with cold caps:
* dump out your ice bin if it removes and use that partly for food or cap storage
* if you pick up the dry ice the afternoon before treatment move your frozen food into the ice chest with the dry ice
* pack your food back in around the boxes once you have fit them all in the freezer
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