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Cold Caps Users Past and Present, to Save Hair

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Comments

  • Kelli1970
    Kelli1970 Member Posts: 32
    edited June 2010

    I just wanted to let everyone know I am having a problem with frostbite too.  I am 13 weeks PFC and let my "flakiness" go on for too long after the treatment.  Long story short, I went to have my hair trimmed at 10 weeks PFC and my hairdresser told me to have my scalp looked at by a dermatologist because she thought I might have "cradle cap".  Well I went to my doctor first who then put me on antibiotics for a week and then sent me to a dermatologist.  He didn't think it was cradle cap (or any bacterial infection) he simply thought the bald patch on the top of my head is "frostbite"  He is having me put hot compresses on the spot (I know we are not supposed to put heat on our hair but I felt I was far enough past the time) and an ointment three times a day.  I go back in a few days and he is going to look at the spot again and if the flaking is gone he is going to have me put a steroid cream on it to hopefully get the hair growing again. 

     I did lose hair around the hairline and around my bang area at the same time as my bald spot but I am very happy to report that that hair is and has been growing back very nicely and very soon I will be able to take my headband off!!  I am still so glad I used the PCC's because I do not look like I have been through chemo.  I even ran in to Geralyn the other day (we have the same PS) and she couldn't believe how great my hair looked.   

    To everyone who is going through their treatments now, just know that it does go by quicker than you anticipate and once your done you will look back and be so glad you used the caps...Cool

    Take Care Everyone and I will keep you updated on my "frostbite".  Kelli

  • Drim
    Drim Member Posts: 134
    edited June 2010

    Ang7 - Thinking about you and hoping you are recovering well from your hernia surgery. It sucks that you need to deal with this on top of everything else!

    GAgirl01 - Congratulations! It sounds like things are going great for you. I hope round 2 went just as well. It sounds like you're going to be fine. Do you have multiple helpers that rotate each week? Sounds like this could be the most challenging part of your treatment.

    OrdinaryMammal - I so remember those 'holding my breath days'. I drove my family insane because I was so nervous. I'm sure things are working out well for you. Susan is a great role model so the good energy is being passed to you via the caps! I absolutely love not having that 'I'm sick' label on me. Half the people at work don't even know what's going on with me. Before I knew I was doing the caps I was planning on making some sort of announcement at work to prepare people for the wig but now I don't have to! I went to see my breast surgeon who wanted to hear all about the caps - but still - I sometimes feel like the doctors are like - 'that's nice that the cap thing is working'. As if I'm vane and think I'm better than everyone else and I shouldn't be concerned with my hair. Why should I not be concerned about my hair????? Everyone knows it's the #1 concern among women facing chemo. It's not like I'm trying to look pretty. I'm just trying to look not sick.

    Susan - I'm starting to shift my focus to eyebrows now. I started out with pretty thick eyebrows so there is still a good amount there but I see that most people say they lose the brows after the last treatment and that's still just about 2 weeks away. I signed up for LGFB class which is on 7/15 figuring that by then I will need eyebrow drawing lessons.

    NewBride - CONGRATULATIONS on being done and thanks so much for dropping back in to let us know that you are doing well. I second everything you said on  your last post. My mom wipes my caps before she puts them on (didn't realized it helped with the frostbite thing) and I highly recomment the moleskin. I've been using the CVS brand - the thick one and do the same bathroom thing you do. I also stick pantiliners on my ears.

    cheyenna - thinking about you and hoping you are feeling better. Good luck on Friday!! Sounds like all the hair stuff you're experiencing is totally normal.

    cmksocal - Very exciting that you are about to start soon as well. In terms of glove, my helper got PVC ones but I think any kind of construction gloves are fine.

    I am now on day 9 of treatment 3 and the hair is all there except it looks a little thin around the sideburn area - the left side more than the right. I don't think its really noticable to others. As far as other hair loss it's pretty much limited to the nether regions and armpits. Leg hairs are still growing but need to be shaved much less frequently. Arm hair is all there.

  • cmz
    cmz Member Posts: 31
    edited June 2010

    Hi Geralyn,

    I received my instructions.

    THX!

    Christina 

  • NoSunshine
    NoSunshine Member Posts: 66
    edited July 2010

    Hi Cold Cap Users:

    I finished my chemo (TCH x 6) in February 2010 and managed to not look like a cancer patient by using the PCC's.  Good luck to all that are using them now...try not to worry--you'll still look normal even if your hair does thin a bit! 

    I have a question for all PCC users--past and present.  I am still getting Herceptin every thee weeks and during my last treatment (~6/12) my Onc. ordered Zometa.  I had a few "spots" on my bones during my initial diagnosis in 9/09 but all disappeared after my 3rd chemo Tx.  Not only did I not know anything about this drug but it made me sick as a dog for 4 days!!  Once I recovered I did some research and on Zometa's website it clearly states that one of the SE's is hair loss!!!  A small percentage but none-the-less it's a SE.  I didn't just pay thousands of dollars to keep my hair to now lose it to what my onc. calls a "bone strengthening" drug!!  I'm wondering if anyone else that has (or is) wearing the PPC's is (or was)  on Zometa?  I called my onc. office and told them that to stop the Tx for this weekend until I could discuss it further with my onc.  I don't won't to jeopardize my recovery or be plagued with weak and brittle bones but I also don't won't to lose my hair!  Any advice would be appreciated.  Thanks and good luck to all those that are still going through chemo.

    Carol

  • Ang7
    Ang7 Member Posts: 568
    edited July 2010

    Yikes NoSunshine,

    That sounds like when they wanted me to take Emend.  Great for nausea, but a side effect is hair loss.  No thanks.

  • sebm9
    sebm9 Member Posts: 488
    edited July 2010

    Re: Emend: I took it without any adverse results (and my tummy and GI were extremely happy that I did). The SE is listed for chemo, but when I was researching it I found info that indicated that when used for surgical patients hair loss was *not* a SE. It could be that the hair loss was due to the chemo, not the Emend. (It would be interesting to track us PCC users to see how many have used Emend. It's quite expensive and many places do not offer it.

    I think Joansf had a similar experience to me.

    Just my take! 

    Best,

    Susan 

  • Lifeisgood2010
    Lifeisgood2010 Member Posts: 1
    edited July 2010

    Hi, ladies.... well, this is my first post.  I started my chemo last Friday (Taxotere, Carboplatin and Herceptin every 3 wks for 6 treatments).  I've been reading this forum and would like to know... am I too late?  Will the caps still work for me?  It's only been 5 days, no hair loss yet, but then again, they said it would be day 15 - 18 when it would start.  I was ok with losing it until I started seeing so much about the permanent alopecia!  I'm a bit irritated that my oncologist didn't say anything (still giving him benefit of the doubt - he didn't know?)... SE so far are just intestinal pains and loose bowels, nothing overwhelming, though.  No nausea or rashes... then again, it's only been less than a week...

    Any advice is welcome.

  • Kelli1970
    Kelli1970 Member Posts: 32
    edited July 2010

    I used EMEND during my first 4 treatments of AC.  I unfortunately didn't read up on the SE's before taking them and only heard about "hair loss" as a possible SE after I stopped taking it.  GOOD NEWS is that I still have my hair (I am 13 weeks PFC).

  • Ang7
    Ang7 Member Posts: 568
    edited July 2010

    As far as the Emend -

     I just was not willing to take anything that might mess up my Cold Cap regime...

  • sebm9
    sebm9 Member Posts: 488
    edited July 2010

    Hi Lifeisgood2010,

    You might lose your hair on schedule due to the first treatment; however, you still want to protect your hair follicles from chemo (yes, there is such a thing as permanent hair loss, widely under-reported imo!). The very exciting news is that there has been a confirmed case of a woman in your situation, who began using caps after her first treatment/hair loss. Her hair actually began re-growing and she had two inches of hair on her head much of the way through her treatment!! I think this is extraordinary news and very hopeful. The caps clearly not only helped protect her follicles from permanent damage, but the cold (known to stimulate hair growth in any situation) worked to her benefit during chemo.

    I'd recommend contacting PCC for information.

    There are other things you can do, sans caps, to help your follicles:

    wash your hair gently and infrequently and only in cold water

    comb, don't brush your hair

    don't use a hair dryer/curling iron/hair coloring etc.

    STOP USING DEODORANT WITH ALUMINUM as the aluminum creates a bonding agent at the follicle and actually traps chemo there

    avoid alcohol, caffeine, but push lots and lots of water to help your liver detox those chemicals.

    (all this info is posted throughout this forum but I thought it might be quick and helpful to share it as a reply to you).

    Good luck! Let us know what you decide to do! And it sounds like you are well-tolerating your chemo regimen so far; that's terrific. Congratulations!

    Best,

    Susan 

  • cheyenna
    cheyenna Member Posts: 119
    edited July 2010

    What is Emend please? all blood work good i go in tomorrow morning for AC # 2 then a 7 day wait, ddanger zone for my hair.... im positive though...

  • sebm9
    sebm9 Member Posts: 488
    edited July 2010

    Hi cheyenna,

    Emend is given as a pre-med and is a powerful drug to prevent nausea and vomiting due to chemo. I was given it as a premed by IV and also took a pill and Days 2 and 3 of my treatment. It's very expensive and many places don't offer it to their patients, though it is very effective in preventing that set of SEs.

    Check with your doctor whether it's one of your pre-meds. I had no hair loss due to it or anything else. Don't know if the caps prevented it from damaging my head hair follicles, or I just happen to be in a percentage of folks whom it didn't affect (about 12% experience this with Emend), or whether its listing "hair loss" as a SE has to do with the fact that it is given to chemo patients who all lose their hair (unless they're using PCCs of course! :-)  In the information on Emend SEs, I compared the study done with surgical patients -- no incidence of hair loss there [http://www.rxlist.com/emend-drug.htm]. That's why I took the chance, but everyone should make a decision they are comfortable with. Ask your care team if there are alternative meds which can be given to prevent nausea/vomiting.

    Hope this helps!

    Susan 

  • ordinarymammal
    ordinarymammal Member Posts: 29
    edited July 2010

    Finished Treatment #2 of TC today.  Had a reaction to the taxotere.   URK!  They got the infusion stopped within 30 seconds of my first "funny feeling."  But this meant that with extra meds and then starting it up again slowly, I was in the cold caps for 9 hours!   My son was my main cold capper and a friend who is an RN was his helper.  Fortunately, the early caps refroze well, and once I was home, I was able to assist in digging in the coolers to find eligible caps.

    We adopted Newbride's brilliant idea of wiping the frost off  the caps. I think it should become a standard instruction. This time, there was no frost in my hair either.  A few sections of head seemed to be more irritated than others, so we placed gauze pads for a few caps.

    It was very fortunate that I had two helpers.  You one-helper cold cappers are amazing.  Your helper has to work very hard for very long.  There was a lot of conferring and shared warming of the caps. My son trained my friend while doing the first 12 cap changes, and then he was able to leave for a date and she finished up!

    I do use the emend, orally.  I don't get emend in my IV premeds, but Aloxi (palonosetron) instead.

    Having hair is fun.  My onc's office loved it.

  • cheyenna
    cheyenna Member Posts: 119
    edited July 2010
    im home from #2 AC, needless to say im cold, 7 hours in these things..lol im lucky to have two helpers... my head feels bruised i guess its just the cold...im not feeling near as cold around the ears or very back of neck, but theses placec can be hidden well i guess... this is day 14, some shedding i will say but so hard to say if its normal or not, but it is even... 7 more days and i should know!!! but i will say im losing hair in other places (if you know what i mean?) im praying for no SE's for everyone!!!!

    sebm9, thank you, i cked today and its not something im on....

  • Ang7
    Ang7 Member Posts: 568
    edited July 2010

    Well Cold Cap ladies,

    "What are you going to do now that you have finished treatment?  I am going to Disney!"

    It will be the kids first time...

    I don't know about all the walking as I had my hernia surgery 2 weeks ago, but I will try.

    Good thoughts to all the Cold Cap warriors...

  • cmksocal
    cmksocal Member Posts: 163
    edited July 2010

    Congratulations to Ang7! You get to do the PCC graduation march in the Happiest Place on Earth -- seems appropriate.

    I start (hopefully) on Tuesday.  I am trying to get some greater process details for my assistant, as well as finding someone else to help him.  Some of the information on the various instructions is inconsistent and it is causing  him some worry.  In particular this line from Frank's Instruction sheet, "All caps used should not be placed back in theice chest after use." 

    So what do you do with them?  And what about people who refreezed them in case of extended treatments?  I'm emailing Frank (again, he is going to think I'm a terrible pest).

    Colleen

  • Drim
    Drim Member Posts: 134
    edited July 2010

    Yikes! I think this dry ice situation is causing Frank some angst. The caps were designed to be used in a subzero freezer and not with dry ice. I think the dry ice makes them too cold and then they warm up when you use them. Then you stick them back in the dry ice and they get too cold all over again. All of this temperature fluctuation causes damage to the plastic and the caps are expensive to replace. I have a feeling this is where all of this is coming from. Us US girls without freezers in our centers are causing stress on the caps. One day we will all have freezers and caps in our centers.

  • cmksocal
    cmksocal Member Posts: 163
    edited July 2010

    Drim,

    I think your are right about the challenges of using the cap with dry ice use here in the U.S. When I spoke to  Frank a few days ago he  was very explicit that when the caps are being used with dry ice they MUST be in their Keep Boxes because it has been discovered that caps placed in  zip lock bags in dry ice was harming the plastic. 

    Colleen

    UPDATE SAT EVENING -- FRANK GAVE ME THE ANSWER

    I'm rather embarrassed that I hadn't figured this out myself.  You don't put the used caps back in the cooler with the dry ice because the caps are warm and that messes up the temperature inside the coolers.  Same as what happens if too many people open the cooler too often. Duh -- should have figured that one out myself.   So just leave the used caps outside the cooler and when you get home put them in the freezer.  If the caps are left out all the time the gel would eventually harden through evaporation through the plastic because the plastic is not vapor proof.

    Hey you learn something new every day. 

    Colleen

  • cheyenna
    cheyenna Member Posts: 119
    edited July 2010

    im on my 15th day and notice a lot of thinning, around my ears i dont think are gonna make it. its falling out too easy. im getting worried... a few more days to go i guess!!! im praying!!!

  • sebm9
    sebm9 Member Posts: 488
    edited July 2010

    cheyenna: Above my right ear is where I lost hair to any noticeable degree; because of the way I wear my hair, it isn't obvious unless I have my hair pulled back. And it's only on one side for some reason. I guess I am lopsided! I compared a pre-chemo picture to a picture post-Chemo #3  and was surprised to see that I think I lost some at the nape of my neck. I can't tell by touching it, so maybe it's an illusion of the photo. If I did lose any, I wear it down, so you can't tell. It never came out in clumps or anything.

    Fwiw, my heaviest thinning came during that first chemo round, then was overall shedding (strands only) throughout, some days heavier than others. I was glad I kept that ziploc in the bathroom so I could see how very much hair was on my head compared to the ziploc! 

    I'm at Day 14 of Chemo #4 and would you believe I still expect I'm going to wake up with all my hair on my pillow? I guess when I'm through next week it'll really sink in what I've achieved.

    Chemo #4 has seen enormous fatigue in my upper legs -- not my overall energy, but just upper legs. Going up stairs and inclines is really hard. But today was a little bit easier, and my swim was a little bit easier (I refuse to not do my full 1.25 mi swim each day, not now, now that I'm almost done with this recovery phase!)

    My real drama is that my insurance company has denied coverage (!) for my next stage, radiation. Unbelievable! Completely standard protocol. My doctor is duking it out with them and my employer's HR department has also intervened. (Insuror claims they never received the appeal, which was sent June 3 and is documented. My HR dept. identified someone at the insuror who will walk the re-faxed appeal/report through the system). My treatment was to have begun on Tuesday but now is delayed til this is settled. I'm trying to hang on to the calm, peaceful place I managed to carve out during these months of chemo, trying to not let the stress of this little episode get to me. I'm sure it will resolve and I'll get started. Meanwhile, I'll just have to treat myself to nice, fun things -- like a nice pedicure! -- in the intervening days and continue to make the most of each day. 

    Cheers,

    Susan 

  • CoolBreeze
    CoolBreeze Member Posts: 250
    edited July 2010

    Hi ya'll.

     I pop in and out of this thread due to interest.  I didn't do the cold cap thing, lost my hair, but it's growing back beautifully.  I'm almost glad I lost it because I would never have let it grow in grey, but it's a lovely silver color, almost a platinum blonde,  and I kind of like it. 

    I probably would have done this cold cap thing except I hate being cold, a lot more than I liked my hair.  :)  So, I read this thread in pieces but decided not to bother.

    But I admire you all for trying something and being on the forefront of what may be something important. I'm thinking about writing about this topic.

    I have some questions for you - how come Frank never posts here?  It would seem like it'd be a lot easier for him to answer questions directly here than be called at 2:00 a.m.  :)  (Or, does he and I missed it?) 

    Have there been any clinical trials that show this cold cap thing works, and can you show me a link?  Are there any US trials ongoing?  (If they are in here, I apolgize, I overlooked them.)

    I'm SO glad that you ladies got to keep your hair.  Why do you think so many people don't know about it?  And, exactly how hard do the people that help you work? I've read many people say they do but I don't understand what it entails beyond grabbing a headwrap out of a cooler.

    Thanks! :)

  • bridetobe
    bridetobe Member Posts: 40
    edited July 2010

    Hi all,

    Just to encourage those starting off, I'm at day 9 of round #5 of TC (taxotere/cytoxan) and still have a full hair of hair.

     Cheyenna: I too lost a lot of hair around the ears during my first round of chemo and actually had white spots in those areas but rest assured they were well-covered by the rest of my hair and those spots have since started growing new hair. In fact, judging by the amound of new grey hair I am finding, my hair has continued to grow through chemo. 

    cmksocal: I understand Frank's logic about not putting back the caps in the ice chest after using but I would add that in some cases its good to have extra cold caps to reuse, especially if the chemo should run long, as has been my case (because of a reaction to taxotere) and we had to "recycle" caps towards the end, which ended up being fine. 

    coolbreeze: there have been clinical trials performed on the cold caps. I believe Beaumont Hospital in Michigan has done a study on these. There have also been a couple of  published reports on their effectiveness, but they are mostly European. But I think the hope for more clinical trials will come from us. The more we show up at hospitals with our hair, the more we will convince others that this does indeed work. 

     Oh and cold cap helpers rock! They have to check the caps with the infrared thermometer. If they are too cold, warm them up by kneeding them (or sitting on them as my helper does - not an easy feat at -30 degrees). Make sure all this is done before the next cap change and do all this every 30 minutes for several hours. In my case, that also entails doing this in the car while driving home, so two helpers (one to drive and one to prepare the caps) were needed. My helpers barely have time for a lunch break!

  • Ang7
    Ang7 Member Posts: 568
    edited July 2010

    Hey CoolBreeze~

    I think so many people do not know about them because some sort of "Cold Cap" was made many years ago and I had 3 oncologists tell me they do not work.  They were all referring to these older, dated types of Caps.  The oncologist I went with said I could use them but that I would lose my hair. 

    I did not lose my hair and she believes in them now, but it will take some time to spread the word...

  • Drim
    Drim Member Posts: 134
    edited July 2010

    Cheyenna - I too see the most noticable hair loss around my left ear so don't let this be an indication that the caps are not working.

    Susan - I'm having trouble with radiation too, not because I'm being denied but because my insurance company is fueding with my health care provider so now the service is considered out of network unless I get approved for continuity of care which takes times.

    CoolBreeze - I don't think Frank has time to visit websites and answer questions. I've mentioned this website to him before but I think his main focus is in the UK. Also, the whole dry ice/cooler thing is not his area of expertise.

    About the clinical trials, the one at Beaumont is still going on I believe, but Frank says running clinical trials is really expensive. If you google cold caps you will be able to see results of other studies that were done but the problem is, unless someone qualified is administering the caps its hard to measure it's success (i.e. lots of human error).

    I think the main reason people don't know about it is because people don't know about cancer stuff until they get it and then they rely on their doctors to give them information. And since this is not FDA approved, the doctors either don't know about the caps or if they do don't recommend them to the patients. You only find out about them by luck or by doing tons of research or both.

    The helpers!! Where do I start...my helper wakes up at 4am, leaves his house with a heavy cooler and gets to the dry ice place at 6am, fills the cooler with 60 lbs. of ice and then has to lift a 100lb. cooler into the car. He then picks me and my mother up and takes us to the center. The cap job starts immediately - find cap number one, and knead it until it's the correct temp (not easy), then apply to my head. Even this takes a couple of minutes with all the fastening and straps. By the time all of this is done it's time to find the next cap (the 1st 2 changes are 20 min apart). When it's time for the change you have to remove the cap, put on a new one and then deal with the cap that just came off my head. All of this goes on until about 4pm. It's exhausting. The helpers are all angels!! Please let us know when you write the article so we can look out for it.

  • cheyenna
    cheyenna Member Posts: 119
    edited July 2010

    Drim, they are angels!!!!!, my sister has the same early routine as your helper,wow!! i dont have to do a thing, she even takes such good care of the caps as far as keeping them clean.. i have 14 more tx im  hoping i make it, Mid November seems so far away..

    Day 16, alot of shedding but i still have a lot of  hair, im getting nervous, i think frank said 21 days?

    I pray that all works out with the INS companies, my chemo was put  off due to problems as well.. It sucks, try not to worry!!

  • CoolBreeze
    CoolBreeze Member Posts: 250
    edited July 2010

    In the interests of full disclosure  - It wouldn't be a "real" article, it would just be for my blog.  I have been writing about my cancer experience, with my own views and opinions about my treatment experience.  It's more on the humorous side.  (although, not so much since they got me on tamoxifen.  :( )

    People are finding it using google and many read it from start to finish, which leads me to think that these are cancer patients wanting to understand what might possibly happen to them. 

    I thought I might write up something about the cold cap thing and present it as an option.  The only place I'd ever heard of it was here.

    Since I didn't do the cold cap thing, I'd have to present it more as an article than my experience or opinion with something. I do want a link to research though, I don't want to come across as promoting something dishonest.

    Maybe, if some of you have before and after pictures and want them exposed, I can use them too?

    I don't know, just kind of thinking out loud here.  It seems a shame that there is the possiblity that women who desperately want to keep their hair can, but nobody knows about it.  I've even heard women contemplating skipping chemo because of fear of losing their hair - seems to me that if there is a chance they won't have to, then it might be nice to expose it more.

    If anybody has any interest, please PM me.  

    Have a happy fourth!

  • Zachsmom
    Zachsmom Member Posts: 39
    edited July 2010

    Considering the caps - but have some questions.

    Hi All,

    First off - thanks to the amazing Dram who is allowing me and my husband to visit her at her final treatment on 7/13. I will be meeting with my onc next week (same person as you have, Dram). Also spoke to Frank for a half hour yesterday. So, here's my issue: I've mentioned a zillion times on this board that I'm really athletic. Frank suggested no chlorine or salt water, which for a summer that is already brutally hot in early July seems really, really tough. I also bike ride and that requires a bike helmet. Long story short is I sweat a lot from all of my activities.

    I noticed one of you said you swam every day. How did you pull that off? Did anyone "cheat" and do intense workouts like running? I know I can't wash it as much as normal and I'm ok with that. Better dirty than bald I guess. But if any of you guys have any input into this, please let me know?

    Thanks again,

    Liz 

  • sebm9
    sebm9 Member Posts: 488
    edited July 2010

    Hi Zachsmom,

    I swim every day (1.25 mi) as well as walk, hike, yoga, Qi Jong, etc. I was able to maintain my activity level (and in fact, increase it just because I had time! added some gentle weight lifting and core training) throughout my four rounds of chemo (TCx4@3) I'm convinced my activity level helped me (a) detox, (b) keep a positive attitude and stay in front of chemo and cancer, and (c) relieved side effects esp. fatigue.

    I am a swimming addict.  I've been swimming every day since 1986 and recently calculated that I've gone approx. 2/5 around the equator; my goal is to make one "lap" around the world in my life. I did not miss a swim and  never had to cut a swim short due to chemo, though last week I was fatigued enough that I'd have had good reason, but I'm glad I didn't because this week I can feel my body beginning return to normal.

    I would rather be bald than give up swimming, though I would not rather be permanently bald than give up swimming (which is a possibility with chemo!). Not swimming for a month post-surgery was extremely frustrating for me.

    My pool is partially cleaned with ozone, so is lite on chlorine (luckily). Nonetheless, what I did before each swim was thoroughly soak my hair in cold water, then put on my swim cap (gently), swim, then rinse hair thoroughly in cold water. Amazingly, my hair did not get brittle and I think I'll continue the pre-soak method even now that I'm done with chemo. I also think having my head in cold water for an hour every day in the pool (even with a cap on) helped me save more hair (I lost very little).

    I definitely sweat when hiking etc but tried not to overheat; in the Bay Area we don't exactly get heat waves though, nothing like other parts of the state/country are going through. The down side is you can't wash it as often. And you can use a cap from the freezer every night for about 30 minutes to help chill a bit.

    Hope this helps!

    Susan 

  • GolferGirl
    GolferGirl Member Posts: 57
    edited July 2010

    Hi Zachsmom - I'm not a swimmer and not the most dedicated at working out, but I have been trying to do semi-regular workouts throughout chemo, too.  I walk, run or do weights (not chest or arms since I have a port) and I get hot and sweaty.  I just rinse with cool water when I am done.   In fact, I rinse everyday, but only shampoo 1 or 2x a week.  I also spent all of 4th of July weekend in the hot sun while boating, riding a wave runner or sitting on the deck with my hair in a ponytail.  I know you are not supposed to do these things, but my hair seems to be handling it all well.  I've even been using my blowdryer on the cool setting almost daily since sometime between treatments 1 and 2.    I have my last TCx4 treatment this Friday.  I've had shedding, but no noticeable thinning or spots.  I got bolder with my hair as treatement progressed and all seemed to be going well.  I broke a few rules, but overall did try to baby my hair and so far, so good!  Good luck!

    Cheyenna- Hope you are doing well with the treatments and the caps!  I had a lot of itching after treatment 1, but it wasn't as bad after treatments 2 and 3.

    cmksocial - Hope chemo went well for you today!  It seems like the first on eis the hardest since you don't know what to expect and your helpers need to get into a rythem.  Let us know how it went!

    GAgirl - Congrats on getting through the first treatment!

    Drim and sebm- My company switched insurance after my surgery but before I started chemo.  All employees were told that there would be no gap in coverage and no worries if we were mid-treatment on anything.  But now the new insurance company is asking for details of all my doctor's appointments for a 3 month period to determine if I had a pre-existing condition!   Arghh!  I know it will all work out, too, and my HR has been very helpful, but what a pain!

    Coolbreeze- I have been getting my treatment at Beaumont Hospital in MI.  I am not sure if they did an "official" clinical trial, but they have been using them here for years.  If they did do an official trial, I think it was sometime ago and I am not aware of anything official going on there now.  The nurses mentioned to me on my first day that "when we were testing them, TC had the best success rate" so this leads me to believe they are done with any trial there and these days they have fully embraced their use.  The best parts for me were 1) my onc is the one who told me about the caps and suggested I use them ( I had no clue about them until he mentioned them to me) and 2) he has a sub-zero freezer in the infusion room, so the caps are there and ready to go for me.  I don't have to worry about coolers and dry ice!  My helpers are still very busy with all the cap changes and setting alarms, but not as busy as if they had to deal with coolers and dry ice, too.  I have 1 more treatment to go, so don't have an "after" picture yet, but the photo in my profile here was taken between treatments 2 and 3.  Excpet for my hair being a little longer, it looks pretty much the same now.

    Happy Hair to all!   GG

  • Zachsmom
    Zachsmom Member Posts: 39
    edited July 2010

    Wow, this is great to hear. I've never heard of a pool with ozone. Right now I only swim about 2x a week (unfortunately I'm out of comission bec I had my MX last week and surgeon wants me to take it easy for a month which is hard for me too). I got my lifeguard certification from the Red Cross in 2000 tho I never used it for anything.

    Ok, I think I'm in. And you guys are so terrific for continuing to keep me positive and hopeful.