Cold Caps Users Past and Present, to Save Hair
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Radmonkey
I wash my hair every 3 to 4 days with Acure Clarifying Shampoo ( green white tube) or Pureology Moisture (purple bottle). I put a small amount, maybe a tablespoon, in a squirt bottle. I add some warm water to shake and mix up the shampoo in the bottle, then I add cool water into the bottle. In the shower, I squeeze the shampoo water mix on my hair starting from the roots down. I have long hair, mid back, so I also take additional straight shampoo and work it through the ends of my hair too. I can put my shower on a rain shower pressure, which is very light pressure, and rinse my hair in room temperature or cool water. It does not need to be freezing cold. In, addition I add Pureology moisture conditioner to the ends, not root, of hair. I use a microfiber towel that I wrap my hair gently on top of my head for 5 minutes to absorb most of the water. I blow dry my hair with the cool shot, no heat, hair dryer. Just a little at a time between just air drying the hair.
I think it is best to have fairly clean hair so I would not let it get too dirty feeling. Good luck and glad you feel less nauseah
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Radmonkey--I had chemo on Wednesdays. I washed the Monday before then on Saturday. Then every 4 days. It's great you got out and walked! KEEP MOVING! Get that shit out of you! And drink tons of water.
EmHaich--I would advise no hats because they can pull on your hair even the smallest bit, and out can trap heat especially since summer is coming up. Believe me, you'll want to wear hats at some point but celebrate your full head of hair right now! I look back at pics from midway through and still had more hair after round 3 than I do now. You will shed about day 19-23 so ENJOY!!
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Soxfan75 and Radmonkey,
I am using the Penguin coldcaps. My caps are -35 in the middle and the sides and back/front might be a lower temp around -25 to 30 Celsius. The temp does vary but we massage the gel in the middle of the cap until it warms up if it is a -40, r colder than -35. It doesn't take more than a minute or two to massage the cap with gloves on. This is my husbands job and he takes the caps out of the freezer 4 minutes prior to changing the caps. This also helps the cap be more flexible to put on. I can then get it tighter on my head.
Hope that helps
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thank you so much for the shower tip! I feel so much better! I wish I could shake this nausea and fatigue. I guess I will know day 19-22 if the cold caps are working. I'm letting my leg hairs grow out as a control. Gross, I know
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radmonkey-I was extremely sick on AC and it happened all through capping until I threw up so much I had to go to the ER.
On #4 AC they gave me different premeds olazapine and amend (not the right spelling) but it completely cured me in fact they give me the same for taxol and I feel so much better!!
They also had me come in 3 days a week to hydrate me during AC.
My cold caps are different temps all over they said with PCC that the top be -30 for me.
Hang in there! My shedding started day 25. I braid my hair to wash it. I use the acure. I have detangler spray as well.
In Oregon pot is legal. I had never had pot in my life but a nurse who actually had breast cancer told me about edible pot. Well like chocolate with pot in it.I completely threw out all the other nausea meds and would eat a piece when I felt sick or nauseous. It did not make you high just helped with the nausea for me. I had no side effects like I did with the other meds they prescribed.
❤️ MJ
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a note on the bone pain...I had such a bad reaction to the neulasta that I started asking around to some friends I know that have had breast cancer. They were all surprised that I had the Neulasta shot at my age (47) so I started doing some research and read that Neulasta was used more in the over 60 crowd. My second Chemo I told the MO I didn't want the Neulasta and he said OK and that he would just keep an eye on my blood levels. I finished the last three rounds without Neulasta and my levels bounced back every single time to pre chemo levels. Not everyone needs it
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I keep my PCC at about -32 degrees. I feel as though this is the perfect temp. If I go any colder, it makes my scalp super sensitive. Right now my entire scalp is flaking.
Just an update, I'm on round 12/18 taxol/carbo. The majority of my hair loss is happening at the very front of my hairline... I think my cold cap isn't getting cold enough there, or isn't making adequate contact with the hair in that area. Has anyone else had this problem? I'm using penguin cold caps.
If I just stopped here, at the equivalent of 4 rounds, these cold caps would be a HUGE success. These next 2 rounds are making me nervous though. Those of you on taxol, did you find the shedding to taper off at all? My shedding hasn't been a TON, but has been very consistent with no sign of stopping.
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Sherry, I had 12 weekly taxols (long with Herceptin) and hardly lost any hair at all. Maybe the combination of taxol and carboplatin is harder on hair than just taxol. I didn't have issues with the hairline. We used moleskin with pieces of pantiliners to cover the skin so that we could get the caps over all the hair without freezing my face
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I was going to place an order for Viviscal. I found a good price at Target for the pink/white box. I also found the brown/white box at Lucky Vitamins. Which Viviscal do you recommend
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Radmonkey: I use Kenra Clarifying Shampoo (you can purchase on Amazon or at Ulta) and it does a great job of getting rid of the build up and grease.
Lowcountry: I hated taking the Neulasta also. I think I will ask my MO if I can skip it too as I'm under 60.
I also had to change my cap twice on the way home. Once in the parking lot of the hospital and once at the Target parking lot. I think by that point, i didn't even car if someone saw me. I was so ready to get home and be done with the day. The capping does make for a long day but I am continuing to keep fingers crossed for success. I'm on Day 15 from 1st infusion and just began to shed a little.
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Cali58 - I bought the pink and white box of Viviscal
Temperature of cold caps - I am not sure how cold mine were, but with mine if they were too cold, they were so stiff that they were impossible to even get on my head. So they had to be removed from the cooler and let sit to thaw for 10 minutes or more. So I wonder if the Penguin caps were better for putting on at colder temperatures? Too late for me, but if anyone is making the decision on which company to use, I used Wish Caps and might have been better off with Penguin if they are malleable at even the coldest temps.
I am 5 1/2 weeks PFC and still shedding. I want to say that I look better despite the thin hair but it could be I am getting used to looking this way. I don't see any new hair growth. I shaved my legs to see how quickly my hair grew back, and after probably 5 days, I barely have any stubble. So I think my growth is VERY slow and maybe nonexistent on my head. I have been on Viviscal for almost 4 weeks. I also used quite a bit of corn starch on my head during chemo to help lift my hair from my head and tame some of the dirty hair. Well, I think it's caked onto my head now. Flakes of it come off (along with a few strands of hair). So I think corn starch was a mistake. Yesterday, when I washed my hair, I used some sea salt to gently scrub my head to try to clear off some of the corn starch (b/c maybe that is clogging the hair follicles).
I have one more box of Viviscal to take. After that, I think I might switch to Biotin. I think Viviscal contains 120mcg of Biotin whereas if I buy a bottle of Biotin, I can get it in 1,000mcg or even 10,000mcg. A bottle of Hair, Nail and Skin vitamins has similar ingredients to Viviscal except with 1000 mcg of Biotin. Has anyone taken Biotin vitamins or the Hair, Nail and Skin vitamins containing higher levels of Biotin?
I am concerned with my lack of progress in hair regrowth and the continuing shed. I took notes on what other women here have reported based on if they were on the same chemo drugs as me. I also note whether they started with a thicker head of hair (mine was thin to begin with). I go back in forth between "OMG" and "there's hope".
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gokale- thanks for your response. I ordered 3 boxes toget started.
For anyone interested, I bought viviscal for $28.99 each box at target.com. This is the best price I found online.
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Cali58 - that's an excellent price for Viviscal! I paid $34 at Walmart and had to order it.
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I am only 16 days in (after 1st TC treatment). I've been taking Biotin. 10,000 mcg twice daily. So far, I have little shedding but I know it's still early. Fingers crossed.
I have also read about Silica. I bought that too but have not started to take it yet.
Is Viviscal supposed to be taken after treatment is done?
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Hello ladies,
I have been reading a lot about taking supplements like Biotin and Viviscal. I was told to limit intake of supplements during Chemo. Are these supplements working for you?
Thanks.
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Rdsm - I think Viviscal is for after you're done with chemo, but I could be wrong.
Powerpuffin - yes, I was told to limit supplements during chemo. I am not sure Biotin or Viviscal would be able to compete with the chemo, anyway. And Viviscal is rather expensive so I probably hold off on that during chemo. Quite a few people have had great success with Viviscal after chemo; it's too early for me to say if it has helped.
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Hello everybody! Today My Dr. Said i will have chemo, thanks i started reading all your posts since one month ago so i was prepared for the worst part like Pamela said. I am planning to start next wednesday i dont want to wait. I am having FEC-D it is a tough drug. So i need to decide either Penguin that i guess alot of people is using it or Paxman they send the machine to the hospital and they pick it up later. And you dont need to change every 30 minutes the caps and buy dry ice and it cost 495. every session. But i am afraid that it is not as effective as penguin for the type of drug i will have. Do you have some advice please?
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vivianlu8 - does your infusion center have a bio-freezer to put the cold caps in. It would greatly reduce the amount of dry ice needed. Check the rapunzelproject.com for a comparison of cold caps and the location of the biomedical freezers. Paxman is new, so I'm not sure who might have a experience with that. The key is to make sure the cap can fit to your head tightly. I use the penguin cold caps and I'm able to tighten them down on my head. They also have headbands that wraparound my hairline and so far I have had some shedding after two treatments of taxotere and cytoxan.
When I was doing my research I called and infusion center in Louisville Kentucky to see what they would charge for me to use the dignicap. I was told it would be $100 for the day of treatment regardless of the amount of time you needed to use it. I decided not to go there due to the 240 mile round trip
What I like about the penguin cold caps is i can go home to wear my caps the four hours after infusion. That is why I need some dry ice to keep them cold afterwards. Most infusion centers do not want you taking a chair for that long after infusion, or you could go to their waiting room. I have to wear my caps one hour before infusion starts, and four hours after chemo ends. Everyone is different based on their treatment. So make sure you find out how long you have to wear yours on treatment day. I wear mine a total of eight hours on treatment day.
Good luck and let us know what you decide. It is worth it
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Thanks Pambc! Does anyone have the same regimen of drugs that could tell me which colp caps used and with some success please?
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I don't know the abbreviations yet but the FECD drugs are fluorouracil, EPIrubicin, cyclophosphamide, and DOCEtaxel.
I need to make a decision soon. Thanks.
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vivianlu, in the years I've been following this thread there haven't been too many on FEC-D. But the person who started this topic, Can-D, had that regimen. She is no longer active here, but you could go back to the very beginning to see how she did. I'm sure she used Penguin caps, as that was the only choice then. I do think Penguin is the best for fitting any size and shape of head, and getting the most scalp contact.
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How do you count days?
As far as washing hair goes, we should wash on Day 3.
When counting 3 days after chemo do you count Chemo day as Day 1? or is the day following chemo Day 1?
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chemo day! I have done 4 dose dense AC and 3 out of 12 taxols my hair is REALLY thinning hoping it holds. After today I'll have 8 left half way through! I feel like my hair has slowed down but still shedding. I have a bag full I keep it just to keep track of how much I lose. My worst areas are the back of my head. I can comb some over but even that is getting more difficult. It's ok because i still have hair i am thankfulI did buy toppix but I think I need a darker color. I did see a little peach fuzz by my ear where I have a bald spot so maybe it will start growing a bit.
❤️ Stay strong
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I always counted Chemo Day as day 1. So I would get the chemo infusion on Thursday and wash on Saturday. I am not sure if everyone counts the days the same way, though.
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I have chemo Wednesdays and wash Saturday I think everyone is a bit different
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mjpow - your hair looks very good.
I am having chemo on Tuesday and I was washing on Thursday. I asked my penguin cc rep and he said I should wash it on Friday and not on Thursday. My hair is extremely thin. My MO told me that cold caps work only 50% of the time
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I had chemo on Wed and washed Saturday. Day 1 was first day after chemo. I got that off the example that was on my penguin instructions.
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Same for me--Chemo on Friday, washed on Monday, per my Penguin rep's advice
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My chemo is on Friday and I usually wash on Monday or Tuesday. I was told you always count chemo day as day 1. Good luck everyone.
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My chemo day is Thursday and I wash on Sunday. I do want to recommend Avalon Organics Biotin-B Complex thickening shampoo and conditioner. It really cleanses the hair and washes out easily. I just finished TCHP #4 of 6 and I estimate I've lost about 10% of my hair. The only area that is noticeably thinner is above the ears (sideburn area). Needless to say, I'm thrilled with the results so far. I just hope it hangs on for two more treatments.
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