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Cold Caps Users Past and Present, to Save Hair

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Comments

  • MichCali
    MichCali Member Posts: 44
    edited March 2017

    Pamela23-- Hello. I had radiation 13 years ago when I was diagnosed with DCIS. I hope your remaining treatments go smoothly. I then waited a month and started tamoxifen. Back then it was only recommended for 5 years. I was lucky-- I had no side effects from it. I know some people do. Touch decision.

  • Pamela23
    Pamela23 Member Posts: 394
    edited March 2017

    MichCali, so you are a 2nd timer? You had DCIS 13 years ago and now a recurrence? It must be IDC this time if you are doing chemo. I think that is everyone's nightmare. I'm sorry you have to go through this mess again but thankful you have found the forum. I'm glad you didn;t experience any SEs on tamoxifen and I like even better that you could wait a month. I feel like I'd like some time to heal before going on it. It's been surgery, chemo, radiation back to back and I feel like my body needs to heal a bit. Still lingering SEs from chemo so I'm not ready to experience new ones!

  • lovesgreenthings
    lovesgreenthings Member Posts: 99
    edited March 2017

    MJPow, glad you are back on track to cold cap. We will keep lifting each other up, I am only 2 infusions into it so far! I had my big shed yesterday, day 21. It was not so much hair after all. I thought it would be bigger, but honestly, after not washing and brushing as I normally do for 21 days, all those dead hairs had to leave anyway. We shall see what the next few days (and months) bring. :)

    For chemo questions, you could join the chemo boards here, there is a ton of good information shared. PM if you want more information on the active boards/links for the February/March group. We have a group of about 20 of us who started in February (I was 2/28 so tail end) and it has been great for all of us to learn from each other and sound off if needed.

    Pamela23, I am a second time around lady myself. NOT a recurrence, but a brand spanking new primary. Lucky lady indeed! Tested negative for the Braca's 6 years ago, new gene test pending. I was offered the AI's last time and did not do well. I took a break after radiation and started them about 3 months later. My issue was depression, something I do not normally have. Ever. No other side effects but the depression was very bad and would not leave. I was not interested in taking more medications to combat that SE for 5 years. It felt like my body was telling me not to do this. I tried 4 different times with different meds, including Tamoxifen. I was 51 at the time. Finally, one of my nurses said to me that if it is not working for you, stop. So I did. And honestly, stopping did not create this new primary as it is a different type altogether. I verified this with my Doctors and as we all know, cancer can be random and opportunistic. For most women, they have few issues on these drugs and you will most likely be one of them. It was hard to accept a failure like this, but my quality of life was more important. Because of my personal failure with this, I have been curious about those who succeed and ask often if people are taking these drugs. A lot are and almost nobody has had issues with the drugs at all. I hope that helps you get some courage about starting this therapy. There are great benefits so it will be worth it if you can do it. P.S. Taking a short break after radiation is a good idea, we all need a break from this at some point.

  • bruinvol10
    bruinvol10 Member Posts: 3
    edited March 2017

    MJPow, Pamela23, lovesgreenthings and STLgirl - your recent posts have been very helpful to me. Thank you so much to you all for sharing your experiences. I had my first treatment/capping day yesterday. Very stressful but would have been so much worse had I not found this site! I had a team of 3 that never stopped working and when my son came after school, they put him to work too! MJPow - I thought of you on our way home. It was the worst part. We didn't pull over and my husband, who was in the backseat with me to change the cap (TWICE), and I both got car sick. One thing I don't remember reading about on here are the dry ice fumes? Our area for chemo was not very large and they all had to step out a time or two to get some fresh air. I think the fumes were part of the reason we didnt feel well in the car either.

    The Dr Scholls moleskin worked really well on my forehead and ears but I was wondering if anyone else had trouble getting the adhesive backing off your skin? I spent about an hour after we got home dealing with it and finally got it off with coconut oil. Now I am a greasy mess and pulled quite a few hairs out trying other methods before the coconut oil. Did anyone wash their hair before the third day after chemo? I haven't washed it since 2 days before, and I wasn't planning to wash it today but I feel pretty gross now. Guess I should get used to it!

    Will go back for my shot today. I couldn't wrap my brain around that timed patch for it. I was just READY to go. Maybe next time I will try it...

    Hope you all are feeling well this morning. Thank you for your help. So happy to have found this support page!

  • GoKale4320
    GoKale4320 Member Posts: 580
    edited March 2017

    CatGirl2 - so glad to know that the head tingling is still common for cold cappers

    STLgirl - I am thinking about getting a wig, but I haven't gone to the store to look. I have a family event in May and would like to look presentable. Might wear a hat as long as I still have some hair. So nice that they let you order one without obligating you to buy.

    I have been using Acure shampoo when I wash. However, it doesn't rinse out well and my hair looks SO dirty once it dries. Could it be that cold water doesn't rinse the hair adequately? So the other day, I decided to use a spray bottle of water to mist my hair thoroughly (sat outside so it didn't matter about dripping water everywhere). Then applied the shampoo, misted my hair more, followed by using cups of water over my hair in the kitchen sink. Still, didn't get the shampoo out.

    To combat dirty hair, I have been using baby powder in my hair to make it look less dirty. Is this a no-no?


  • lovesgreenthings
    lovesgreenthings Member Posts: 99
    edited March 2017

    bruinvol10, cold capping is crazy hard to do, it sounds like you did well your first run overall. I use panti-liners vs. moleskin and have no issues with getting them off my forehead and ears. They protect well too. Might want to try that instead. You should leave some windows open for the dry ice, when I pick mine up and put it in the trunk, I still keep the back windows cracked open. Could have been the reason you got sick. Sorry about that! I rinse my hair in cool water the day after cold capping, the manual says you can wash it too BUT you must wash it on day 3. I wait until Day 3 to actually wash with Acure, but rinsing gets the gross out the day after and by then it has been 5 days of no shampooing if you are following the rulebook. Not sure if it will make a difference in my results or not, but there is a smell to all this that bothers me so I am doing it anuyway.

    GoKale4320. Agreed that Acure shampoo leaves a residue. My hair is more used to it now, so not as bad as the first week, yours may adjust as well. I rinse very well when I do shampoo and use just a touch of conditioner on the ends. Today, I found something that another Cold Capper recommended for yucky, frizzy looking hair. Oliolgy Coconut Oil dry oil mist. She got hers at TJ Maxx, I found it at Marshalls (same store/chain.) It smells divine and already my hair looks better. Just a light spritz on the length (not crown) did the trick. I will stop using Acure Conditioner and use this from now on. I will add that I have rinsed my hair twice a week and then washed twice a week so far. The manual said to rinse your head if it ever gets hot, so I figured I could rinse in cool water without issues. That has helped keep it a bit more normal looking. No volume of course which is hard to deal with but we have hair, right? I don't know about powders on the hair, maybe someone else will have an answer for you on that.

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited March 2017

    hi gokale, before giving up on Acure shampoo try the Acure but the one that says clarifying shampoo. I got that one and I feel it cleanses my scalp from all the residue without having to scrub harsh.

    And I love the oilology coconut oil mist. I think I'm the one that posted that and I love that spray. I spray a little on my hands not directly on my hair. Then I dam onto my hair. Wish I had gotten that back in November when first starting.

    Good luck everyone. To all the ones starting and to those of us Finished waiting for our normal hair to return. I just want my old hair back. I'm sure we all do.

    Hugs.

  • Pamela23
    Pamela23 Member Posts: 394
    edited March 2017

    Bruinvol10--congrats on getting through your first one! You are right, the dry ice fumes aren't good, my husband was told to drive back from getting it with the back windows opened. I would NOT wash your hair yet. By day 3 you'll want to because the chemo seals from your pores and urine and you'll want to wash your hair at that time to feel cleaner. You have to baby your hair!! Also, do you know about taking Claritin the day of the shot and up to a week after to relieve some of the bone pain? I never had problems w/ the mole skin...hmmm.

    Lovesgreen--that is crazy about a whole new cancer. It's really a crap shoot which is the scariest part of this disease. Same breast or other one?

    I didn't use Acure but so many women loved it. If the clarifying one doesn;t work for you, just know that as long as it's sulfate and paraben free, you should be fine. There are A LOT on the market. Target has a adequate selection. I used baby shampoo and found out halfway through that it contained sulfate but I still use it 9 weeks PFC since my hair never looked oily. It really cleans the WOW powder and L'Oreal spray buildup out of my hair. It's actually very gentle. I'm still getting a combful of hair out every washing. Hopfull--I'm with you , I want my old hair back! No one can tell, but it's so much thinner than when I started.

  • 7of9
    7of9 Member Posts: 474
    edited March 2017

    9 months after cold capping for 4x Taxotere....lost 70% plus of hair. Someone just told me how THICK it was last week. WHAT!?! Yeah! And it finally regrew out (after trim, trim, trim to get rid of the stoner thin hair look) and I like it (sort of).

  • lovesgreenthings
    lovesgreenthings Member Posts: 99
    edited March 2017

    Pamela23, the opposite breast this time. So 2 lumpectomies and 2 SNL's. Both early stage although the first was really tiny, just 3mm, so no chemo. I called it Breast Cancer Lite. I sought out a genetic specialist last time and her words were (and again as I see her now as well) "you must have the gene, we just do not know what gene yet. But, you got it early both times and that is key." There are quite a few second time around ladies on these boards I found out when I rejoined 6 years later. A new primary, early stage is treated differently than mets or recurrence - just like it is the first time essentially although we chose to hit it hard with chemo this time. Emotionally, this was much harder for me but physically it is fine. I did all the right things in the past 6 years, BMI is great, eat well, drink moderately, exercise every day. And now I put my faith in the wonderful team that is treating me for this. Once I get my second gene test back I will know more and make decisions on further surgery. At 57, my ovaries and uterus can be removed without any emotional issues and that will go a long way to give me some comfort on not starting up again there. Keeping an eye on my colon (!) too. Arghh . . . .. so much to think about but glad for the advances that have been made in the past 20 years.

  • MichCali
    MichCali Member Posts: 44
    edited March 2017

    Pamela23 and lovesgreenthings, I was diagnosed with a new cancer also-- this time triple negative. I'm lucky it was small but was very upset after it was found with routine MRI. I still can't believe I got a new cancer. I had the additional genetic testing which came back negative. My oncologist said it was probably just a new cancer but didn't like that it was same breast. He sees a lot of breast cancer with women being negitive after genetic testing. He thinks a lot are environmental but who knows. So that's why he strongly recommended a mastectomy instead of lumpectomy since tumor was small. But I could only have chemo. They won't do radiation since I already had it. I hope the chemo works. Since I'm triple negitive, currently there are no drugs or anything to do after chemo except follow up checks and scans.

    Now I wait 3 months and then I'll have reconstruction in July. My plastic surgeon needs my body to heal. Because of my previous radiation, I can't have an implant so I'm doing a diep flap.

    Has anyone with triple negitive heard of anything or doing anything after chemo that they would like to share?

    Bruinvol10---I had the patch instead of going back for the shot 4 times with no problems. The nurse put it on when chemo was finished even though I still had 4 hours left of cold caps. I had it put on my stomach and 27 hours after my chemo ended , I heard a beep, then felt a small prick and the medicine goes in. It takes about 45-50 minutes. I heard a clicking while it's working. Then it beeps when finished and the box reads empty. Hope this helps for next time.

  • meow0369
    meow0369 Member Posts: 126
    edited March 2017

    Bruinvol, where you got the dry ice or caps should of told you that the fumes are dangerous and make you pass out. Arctic is what I used had said to be sure that you store caps/ dry ice away from living areas. It kinda scared me w my kids. I kept mine in garage. Especially keep car windows cracked open good.

    MichCali, I am triple negative finished chemo in Sept. ( but sometimes feels like yesterday ) I am Braca1 positiveThere are 5 of in my family. Mom, 4 aunts and me ( 2nd generation )so far. I changed PS and waiting to see new one. I had bilateral mx recon last May and still have expansers in (shockingly) I had to do chemo first then took time off to recover. I had a very hard time. I don't want implants or flap done( told not a candidate) waiting to ask PS about fat transfer. Don't know if it's possible but see that women not in our situation are doing it instead of implants. Wouldn't that be great to use our own fat to create breast mounds.?


  • MichCali
    MichCali Member Posts: 44
    edited March 2017

    Meow0369--- the diep flap that I'm having the done will be using fat from my stomach microscopical. This was the best recommendation from my plastic surgeon and oncologist. I had to have my expander removed because I got an infection and my PS thinks my body was rejecting it because of my previous radiation. We sure have to go through a lot

  • lovesgreenthings
    lovesgreenthings Member Posts: 99
    edited March 2017

    MichCali, there is a Triple Negative forum on here that you should check out if you have not already. Some of the ladies have advocated for Metformin after treatment to keep the cancer at bay. It is a diabetes drug that keeps glucose levels down, since they think sugar in any form feeds the cancer, this could be an option but it is a daily maintenance drug. If you scroll through the boards you can find the science behind it in a study one woman took to her MO who said yes to giving this a try. I will be discussing this with my Docs as I get closer to finishing what is in front of me right now. If you can't find the study, PM me, and I will try to get it over to you. It sounds like your Doctor gave you the best options for your situation. Waiting on my second gene testing to see what any additional surgical alternatives are. Negative for the Braca's the first time around and that is what they use to make surgical recommendations at this point. Also, the TN board is loaded with success stories and how well cancer responded to the chemo so it is encouraging. The strides made in just the past 10 years have been enormous.

    Meow0369, agreed that using our own body fat is a great idea to reform breasts. I saw a video of Suzanne Sommers who did this a few years ago. Worth googling to see what she did to fill in for her very big lumpectomy. Of course, she has loads of money and resources beyond what most of us have, but it was interesting to see someone taking the bull by the horns and refusing the standard re-concontruction route. Wish you the best with your further reconstruction.

    Wishing everyone the very best day ahead!

  • Unknown
    edited March 2017

    Bruinvol10 - I also had trouble getting the moleskin off so my husband and mother-in-law put baby oil on the end of a q-tip and used that oiled q-tip to separate me from the moleskin......kind of pushing my skin off the moleskin while peeling it off. They each worked on opposite sides of the moleskin until it was all off. Doing that only took about 5 to 10 minutes.

    I'm actually getting ready to leave out the door for my second round. At least this time I know what I'm in for.

    How long does the "big shed" last? Mine started Sunday. Sunday there was a lot and it seemed to level out a little Monday and Tuesday. But this morning, ugh.... a lot came out while combing:(

  • PatinMN
    PatinMN Member Posts: 784
    edited March 2017

    on the moleskin - try only taking the backing off part of it. Leave the backing on the part closer to your hairline. Then you can get it closer to your hairline without the risk of pulling hair out when removing it. And with only a little of the sticky part on your forehead it doesn't hurt much to remove it

  • Catgirl2
    Catgirl2 Member Posts: 83
    edited March 2017

    I'm happy to say that I'm sending my cold caps back today! Round 4 of T/C completed yesterday! Still waiting for the eyelash/eyebrow shed to occur in the next few weeks. Now on to the next step of recovery and then T/E exchange! I'm a little concerned about the newly released data on risk of ALCL. I realize that it is not a large risk, but I'm concerned. My plan is to get implants. I guess that's a discussion I need to have with my PS and MO in the near future.

    My thoughts and prayers are with those of you still on the cold cap torture train! Is it grueling, yes. I feel it has all been worth the pain and effort to keep 60 - 70% of my hair (so far). We will see the true outcome at the end of the shedding. I've been lucky to have a strong group of supporters throughout this whole thing. I don't think I could have done it with out my fabulous boyfriend as my capper. I also could not have done it without all of you and your wise advice and moral support! I feel for those of you that have a longer treatment plan, but you can do it! We are all strong women that think outside the box!

  • GoKale4320
    GoKale4320 Member Posts: 580
    edited March 2017

    CatGirl2 - Yee-haw, on sending the caps back!! Congrats! I cannot wait to send mine back. I already told my husband when we are going to the FedEx place and where it is. I hope you don't shed too much more.

    STLgirl - on the big shed - I cannot say for certain how long it lasts, but unfortunately it is quite a few days. I try not to comb my hair. I use my fingers to gently lift my hair so it doesn't look so matted to my head. After I wash my hair and let it air dry, I use a comb to carefully get my hair back in place.

    I also want to say that I appreciate the humor here. Somebody recently said they trimmed their stoner hair. LOL, that's what I've got.



  • Pamela23
    Pamela23 Member Posts: 394
    edited March 2017

    HOORAY Catgirl!!! It's such a relief when those caps are out of your house! I hope you glide through the SEs the next few weeks. It helps to know it's your last time! My last chemo was mid January and I still had eyelashes a month later, but then slowly they came out. Not sure where, I never saw them on my face, in the sink or on my pillowcase but they exited within a couple weeks. So now it's mid March and I am seeing the TINIEST eyelashes coming in if I look in a magnified mirror. I started putting castor oil on my brows and lashes morning & night about 2 weeks ago which is suppose to stimulate growth. I can actually see eyebrow hair coming in! Lost 50% of those in the past month too. So it's about 4-6 PFC when you shed these things for anyone whose wondering.

    I REALLY want to use Rogaine on my hair but am scared to since it's chemical based. I tried the castor oil lightly around my hairline on it last night and it was fine this morning but then I did it this morning and my hair now looks greasy. I sprayed dry shampoo in it since I want to save my washing for tomorrow with a wedding to attend tomorrow night. Still trying to decide if I want to try false lashes for that or if it'd damage what's coming in. Decisions, decisions!! I'll just be glad to color my hair in 3 weeks w/ an ammonia free color. It'll be 12 weeks by then. Anyone else do it pre 3 months besides IL311?

  • Catgirl2
    Catgirl2 Member Posts: 83
    edited March 2017

    Thanks, Pamela and Go Kale! Sending those caps back makes for a happy day!

    Go Kale: I also laughed at the "stoner hair" comment. Describes my hair texture to the tee!

    Pamela: I will have to try the castor oil for my eyelashes. I'm using the Eyebrow Essentals to try to minimize eyebrow loss. We will see if I started too late after two rounds of chemo. They haven't thinned anymore since I started using it, but I know it's a bit early to see what's really going to happen.

    I can't wait to color! I probably will be cheating a little on that. Let me know what brand of color you use. I'm looking for a safe alternative to my normal permanent color.



  • Hanging_in_there
    Hanging_in_there Member Posts: 113
    edited March 2017

    Catgirl2, Congrats on sending those cold caps back. I could not mail them fast enough. I would have celebrated, but I still can't taste much, so celebrating the end of chemo will come when I can taste.

  • Hanging_in_there
    Hanging_in_there Member Posts: 113
    edited March 2017

    Pamela23,

    I am only 11 days past last chemo. My hair is falling out at an alarming rate. Can you tell me how long you continued to shed and what chemo drugs you were on.

    I posted pics the day after my last chemo and I looked OK. Today, I'm wearing a bandana over my hair because it is so thin, I can't use a barrette to keep it out of my face. It seems the longer hairs have gone AWOL and shorter hairs have remained. I've asked my MO for a referral for a wig in case I need it and have ordered a couple chemo caps. I will be vacationing with my family over spring break and I don't want to end up with no hair in the middle of Utah and nothing to do about it. (I don't think I can get away with a sun hat indoors and pretend it is normal.)

  • Summer2016
    Summer2016 Member Posts: 104
    edited March 2017

    Yay, Catgirl2!!!!! Huge Congrats on completing Chemo :) The best feeling ever! Continued well wishes as you complete reconstruction.

  • Hopfull2
    Hopfull2 Member Posts: 287
    edited March 2017

    catgirl. Congrats on finishing chemo. Anf good luck on upcoming surgery. Sucks we can't just finish chemo and le that he the end of it all. I started tamoxifen today. So I'm not happy about that. Hope your post chemo SE are not too bad

  • Pamela23
    Pamela23 Member Posts: 394
    edited March 2017

    Catgirl--I was using Latisse until Feb when the lashes fell out so realized it'd been a waste of $. Plan to use it again once I get the growth in.

    Hanging in There--I'm over here with no taste either .I'm 9 weeks PFC and can distinguish between salty/sweet/ spicy but no flavors yet. Celebrating will be put on hold here too! My shedding was pretty steady after chemo. About 2 combfuls each washing. I'm STILL getting a combful out each wash the past few weeks but notice less with my regular combing during the day. I was in much better shape with hair/brows and lashes a month after chemo. Now 2 months out, thinning of brows, no lashes (maybe 5 on lower lids) and thinned hair. I would sai I lost 35% of it. No one can tell, I cover the under neath sides w/ the color spray to blend in but if I ponytail it to workout, my ponytail is really small compared to what I'm used to. Again, no one could tell!

    Hopfull--keep me posted on the tamoxifen. Looks like I won;t start it until this polyp is removed which I won;t do until after radiation. I definately want to heal after that. Hoping not to start tamoxifen until May. Just wish I'd get my period back so I know it didn't put me into menopause. Haven't had it since surgery in Sept.




  • Soxfan75
    Soxfan75 Member Posts: 70
    edited March 2017

    Hi All -

    I had my first chemo session yesterday (TCHP) and used Arctic Cold Caps. The cold didn't bother me at all, but the strap on the chin did and I even had it covered with a fluffy sock with the toe cut off to protect it. My appointment was at 8am but we didn't the get the first drug in me until around 10:30am. The first one was Perjeta (pertuzamab), then two hours later it was Herceptin (trastuzamab). I didn't cap for either of those because the nurse insisted that neither of them by themselves caused hair loss. Approximately an hour before they started the Taxotere is when I started capping and then I capped through the Carboplatin and for four hours after per Arctic Cold Caps instructions. I ended up capping for around 7 or 8 hours (ending at 9:15pm) but by the last 3 or 4 hours, I barely had enough dry ice to keep anything cold enough. I had to take a few caps out of the rotation so I could use the bagged ice from those to fill up the caps that I could.

    I bought the dry ice the day before and left the cooler outside all night in the 15 degree weather to help keep the ice from evaporating too quickly. If all goes as planned, my last chemo will be July 6th and I'm worried that as the warmer weather approaches, I won't be able to keep the ice from evaporating. There are no dry ice facilities close by but I may have to recruit someone to restock my supply the day of chemo. Hopefully beginning with chemo #4, the session will get much shorter. If anyone has any other suggestions for making the dry ice last, I'd love to hear them.

    I didn't wash my hair for three days prior to chemo per Arctic's instruction, but here I am and my hair is so gross and greasy and I'm not supposed to wash it for two more days. Ugh... I've heard of using corn starch to absorb some of the oil. Has anyone tried this? I was hoping to take a shower today and rinse my head with cool water, but I don't think that will do anything to get this oil out. Since the temps are so cold, I could probably risk wearing a ball cap, but I don't know how much tugging it will do on the hair. Does anyone have any other solutions?

    I've been using Lash Boost by Rodan & Fields to build my lashes up before my first chemo, but I have to check with my MO about continued use. From what I've read, it sounds like it might be a waste of time and money anyway, and that I should probably save it until several weeks after my last chemo (sigh).


  • Hanging_in_there
    Hanging_in_there Member Posts: 113
    edited March 2017

    Soxfan75,

    How far away is the dry ice? Did they provide you calculations on how much extra dry ice you have to buy if you buy it the night ahead of time. If you need that information, I can go look at my instruction sheet. (It was a whole lot more and I calculated it was going to $140 vs. $75 each time. Anyway, we let the medical center know I could not arrive for chemo before 10:00 (and that was pretty close). Our local beer and wine store which carries dry ice opens at 9:00 and we would be there with a cooler at 9:00, and then stop on the side of the highway to put in the first cold cap (Penguin). And then the second when we got to the medical center.... The medical center is 35 minutes away. The medical center accommodated me and even if they scheduled my meeting with the MO for 8:30, they didn't expect me to be there and he would just stop by while I was getting chemo. I always ordered the dry ice the Thursday before Monday delivery.

    On the chin strap, I added multiple layers of folded over (kotex or other brand) pads. That was on the list from penguin and at first I couldn't figure out what they were for, but as I hurt more, I figured it out.

    Pamela23,

    Have you tried a teaspoon in water swishing around your mouth, several times a day as well as chewing sugar free mint or cinnamon gum lots during the day. While I was doing that I got more taste back, but I ran out of gum (it makes your jaw tired) and it was hard to motivate myself with the backing soda, given all the other things I needed to do. But I'm going to get gum today and start back on that regimen.

    Can you tell me what brand of stuff you spray on your hair and how often you wash it now that you are post chemo. I'm not motivated to wash my hair at all, but it has been a week and it looks worse than ever. I'm just now thinking it is time to buy some.

    I ordered this: https://www.amazon.com/gp/product/B01ICB4V0S/ref=oh_aui_detailpage_o01_s00?ie=UTF8&psc=1

    so I can cover up if I need to, as I don't want to be in the middle of nowhere (on Spring Break) in southern Utah (some places are 40 minutes from the nearest grocery store) and have lost too much of my hair. I guess it has a little more coverage than the bandana I'm wearing today.


  • lizjo
    lizjo Member Posts: 20
    edited March 2017

    Soxfan,

    Congratulations on getting through your first session. That sounds like a marathon! If you're using Arctic, I'm assuming that the gelcaps are Elastogel? If so, many of us have found that the included chinstrap is absolutely useless and only digs into your chin. Both myself and Elastogelgirl have had great luck with an extra wide headband (I think mine was Scunci from target, another was a big goody headband from Kmart). I also supplement with at least two wide elastic straps that came with my kit, but they can be easily sewn from elastic and Velcro. Basically, I do the wide headband (in purple) first under my chin, then the elastic strap over it, then 1 strap around my crown to make sure the cap makes good contact with the back of my head. Check out the arrangement here:

    image

    Regarding the ice, I have one back to back treatment that lasts two days, and I get my ice delivered the day before my sessions. The dry ice folks made it very clear that it's not necessarily the temperature you keep it at, as it is how much air the ice is exposed to. Even if you don't have the cooler completely full with dry ice, it's important to stuff the remaining space with crumpled grocery bags or newspaper. I would also order a little extra dry ice to break up and store inside the caps to help them re-freeze faster and keep their shape.

    Hope that helps

  • Soxfan75
    Soxfan75 Member Posts: 70
    edited March 2017

    Hi Hanging_In_There - Arctic Cold Caps suggested two blocks of dry ice 1 1/2 inches thick and 12" inches square to line the bottom of the cooler. They also suggested 35 lbs of dry ice pellets to fill 8 bags for each of the 8 caps they provide. That obviously wasn't enough so I may go with a lot more next time. My ex-husband has an "in" with a dry ice company near his work which is about an hour and 15 minutes away and the guy only charges us his cost. I have no idea what that will be because the ex forgot to ask and he hasn't charged us yet, but I assume it will be cheaper than $75+ (hopefully). They only sell dry ice at specialty stores around here and the closest one is 45 minutes away. I called them and for the two blocks and 50lbs of dry ice pellets, the normal charge is $80, but for cancer patients they charge half price. Maybe you can find a place that does that? I can't imagine spending another $140 on dry ice after all of the money you've already spent renting the cold caps.

    Adding the kotex under the chin strap is a great idea. I can use that in conjunction with the fluffy sock. Hopefully that helps. Thanks!

  • Soxfan75
    Soxfan75 Member Posts: 70
    edited March 2017

    Thank you so much Lizjo! The headband idea is great and yes, they are the Elastogel brand. Arctic provides a swim cap and three wide velcro straps to go around the head to get a better fit. This was my setup yesterday. The red is the fluffy sock that cover the chin strap.

    image

    I ordered 35 lbs of the dry ice pellets, scooped them in 8 separate bags, and placed one bag in each of the 8 caps the night before. I did it outside in about 15 degree weather and kept the lid closed as often as possible. During the cap changes I noticed that as the dry ice evaporated, there wasn't enough dry ice in each bag to get the edges of the caps cold enough. We had to take a couple of the caps out of the rotation so we could use those bags of dry ice to fill up the other ones so they made contact with all of the cap and not just the bottom. It worked out, but I think there may have been a cap change or two that the edge of the cap wasn't at the suggested -25 to -30 below. I'm praying that it was still cold enough though.