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Cold Caps Users Past and Present, to Save Hair

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Comments

  • samdobbs
    samdobbs Member Posts: 32
    edited March 2011

    A quick question for cold cap users - do you use the caps inbetween treatments? My wife Liddy does the caps 1hr prior and 3-4 hours after infusion, but has also been doing 2 hrs daily in the following week. Anyone know if this can help? Or hurt? Thanks

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited March 2011

    Oh, I am so sorry Littlepenguin and to anyone else that was unsuccessful.  My experience to date - completed 4 of 6 TCH last week. The caps are too small, so shedding in the back.  Hair shedding is high, but passable. No one seems to notice.  Still very thankful that I have the caps! 

    I will tell you that on #4 TCH I declined the benadryl and the ativan at the beginning of tx.  I wanted to be "more present" with the people in the room. I had excruciating pain in my head and eyebrows (esp the eyebrows). I asked for the benadryl and the ativan and life was peaceful and good again.  No pain.  

    I do not use the caps in between chemo.  For me, I can not rationalize why putting a cap pulled from my freezer would help. I just do not see the logic in this...and I am ok with this.  For others, this seems to work.  Good for them!  Frankly, I do not want to do this at home either with the  three kids.  

  • mdg
    mdg Member Posts: 1,468
    edited March 2011

    I am not using them in between treatments as mine are available at my oncology office and I can't take them home at all.  I did read in the many pages on this thread that some people do use them at home in between treatments.  I would ask Frank. 

  • howard
    howard Member Posts: 102
    edited March 2011

    Frank told me to wear the caps for two hours, three times/week. I'm doing everything he said and have had almost no shedding so far. I'll have TC #3 on Friday. It's not uncomfortable to me to wear out of the home freezer. Kind of a hassle, and I don't like to do it, but doing it anyway and very thankful for the results so far!

  • Lmflynn
    Lmflynn Member Posts: 273
    edited March 2011

    I did wear caps a few times a week out of the home freezer - did not find it uncomfortable..however after last chemo (I did TCx4) I could not bring myself to put a cap on again...mental thing. I am 9 1/2 weeks PFC, and hair is thin but all there and starting to feel more normal. Still shedding more than before chemo...so waiting it out to use warm water, good haircut, color...but getting more daring...used the roll brush on my bangs the other day.



    To everyone in the midst and all new cappers ...it's great to hear your stories and encouragement to each other. LP60 .... So sorry to hear about your experience....I know your chemo protocol is a tough one not only on you but on your hair....your attitude is inspiring & thank you for checking back in.....

  • sashasz3
    sashasz3 Member Posts: 97
    edited March 2011

    I do the caps 3 times a week two hours post txs-----I did lose hair---but still have plenty to get by--I finish on thursday----I did have one inquiry about my caps---but haven't heard back from this person--hope if she reads this she lets me know what to do---I will be  ready to pass them on after Thursday the 24th---I do not think I want to do them PFC----so they are ready---and so am I to finish my 6th TCH!!!

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    Sashaz3:  Congrats on almost finishing.  I bet you are so estatic to be almost done.  HOORAY to you!

    Guess I'll try putting the caps on a few days a week for a while right out of the freezer and see how that goes.  Not sure if it helps but it sure can't hurt!  The chemo has to still be roaming around and trying to exit your body so I'll give it a whirl!

  • sebm9
    sebm9 Member Posts: 488
    edited March 2011

    When I used the caps last year, Frank hadn't yet begun recommending you could wear them between treatments. If I recall, I first heard of that as I was going in to chemo #4.

    Btw, today is the anniversary of the day I learned I'd have to go through chemo, truly one of the worst days of my life. But, it is also the day I madly googled for options and discovered PCCs.It was also the time my hospital [where I work] hosted its annual St. Baldrick's fundraiser to help beat pediatric cancer: people volunteer to shave their heads in support of the patients, raising funds for research. I was leaving the hospital as people had their heads shaved being cheered on. I looked at the floor full of hair and I about cried, it was all I could do to get to the parking garage, where I broke down in my car. For a minute, I considered jumping in line and having my head shaved right then and there. It would have been for a good cause, but I'm glad I didn't. It was surreal.

    This weekend, our hospital held St. Baldrick's again -- raising over $100K -- and this morning I thanked a good friend for shaving her head, on behalf of all of us cancer conquerers who benefit from the continued research. (She raised over $10K herself.) She looked at me and said "The difference between you and me is I had a choice." Without thinking I said "It turns out I did too!" We both laughed. But I reminded myself again, I'm one of the lucky ones: I caught this early, fought with everything, and the caps worked for me -- we all have individual success rates.

    I can't believe how much has changed in a year: how much I've been through, how much I've learned, how my circle of care has completely changed. I've tapped my inner strength in a new way: it was always my pulse, but it became my vein. People who I'd never known that well, stepped up in a big way and were by my side steadily. Others disappeared. Cancer is clarifying internally, but also externally, and though some of the changes have been hard, or sad, or physically difficult,  I am a wiser, stronger, more focused person than a year ago. And I hope I'm one of the people who, when someone is in trouble, steps up to help.

    A little babble on my anniversary.

    Susan 

  • Ang7
    Ang7 Member Posts: 568
    edited March 2011

    Wow, that was really nice Susan~

    I actually heard of the Saint Baldrick fundraiser last week and the pictures in our paper made me mad?  I couldn't figure myself out except that I was angry that those people chose to shave their hair off.  Strange how we react to things...

    I wanted to ask all you Penguinistas to think of my friend tomorrow at 12:30.  It will be her first chemo and she is so freaked out...

    Thanks.

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    Happy Anniversary Susan:  So much of what you have said brings me happiness and sadness as we can relate and I don't begin chemo until Monday.

    Funny (well not really) how folks you thought were really good friends have disappeared when they find out you have breast cancer.  They just can't deal with it and that makes me so sad but the others stand strong with you and there to help you through it.

     Ang:  Prayers to your friend as she begins - I know how she feels as the closer I get the more afrraid I get but everyone tells me it gets easier.

    Arlene

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited March 2011

    Susan, Thank you for sharing your post.  What a crashing of emotions that day and days after. I think we can all relate to your words...

    Arlene - like everything on this journey, the waiting is the worst part.  You are so well prepared to do what you need to do and it is all so doable!

    Ang - I will send positive vibes your friends way.  The first day is hard...

    Take care...I just drowned myself in Ben and Jerrys ice cream, so life is not that bad.  :)

  • mdg
    mdg Member Posts: 1,468
    edited March 2011

    Day 20 after first chemo update:  no shedding yet that I noticed on my head (but down south is about 75% gone!).  I did notice one thing...I normally have a lot of small "baby hairs" at my hairline on my forehead and now those hairs are gone.  Now I just have a very well defined hairline with a clean edge.  It is not any big deal and I am sure no one would even notice - I barely noticed it.  Other than that, I have not seen anything else.  I have round two of chemo tomorrow (TC).  I keep waiting...nervously.  As far as my hair care routine (I have long hair), I have been washing twice a week (except chemo weeks - that is a 1 x a week thing).  I have been using Burt's Bees organic shampoo and conditioner.  I make sure to use a wide tooth comb during washing/conditioning.  I gently comb the shampoo and conditioner through my hair to make sure I get it through (my hair does not get really tangly so this works for me).  I make sure not to get any conditioner on the scalp.  As far as the shampoo, I start with a dime size amount and work on the front part of my head.  Then I repeat with another dime size amount and work on the middle and then again on the back part.  Since I have long hair I usually use a fair amount of shampoo, but this is much less than I would normally use.  It does not feel like it lathers much but it does clean my hair.  I use a small hose attachement with a sprayer I got at Walmart (for $8) because I can adjust the flow...by barely turning on the faucet it does not have much pressure so I can move it right around my head/scalp to make sure I can rinse well.  I tried the cup thing and I just couldn't rinse my hair well. This works better.  I wash bending over my large garden tub with cool water.  I then clip my hair up and get a nice warm shower.  I always shower with the bathroom door open and the fan on to make sure the hot steam from the shower doesn't accumulate in the bathroom.  This keeps thing aired out.  As far as night time, I sleep in two loose braids and then put my hair up in a satin sleep cap and use a satin pillow case.  The braids actually give my hair a little wave so it's not so flat.  I have used the hair dryer on cool to help dry my hair.  I use organic Giovanni hair straightning gel and make sure not to get it on roots.  I use very little but it cuts down on the frizzy effects of my hair.  I will keep you all posted. 

  • keeppositive
    keeppositive Member Posts: 181
    edited March 2011

    Hello everyone,

    To Sashaz3: Great news to hear you are almost done with Chemo. Looking back on chemo is so much better than looking forward to it.

    To those about to start, don't be afraid, it is doable and soon you will be looking back on it too!

    To Sebm9(Susan): I agree with all you said, from the anger and saddness at the bald stuff(I too couldn't help but cry when I saw bald women at my center, where the freezer is available, but not all the Dr's. tell about the cold caps.) About the friends who come thru and those who disappear--luckily I haven't experienced that, but definitely some are more there for you than others! Also the  idea of our inner strength that appears when we need it most. I find that so amazing, but I am so grateful too. We never know what we can handle, until put to the test. I too have found myself to have grown, but also to be humbled by this daunting experience.

    On another note: Our freezer at hospital is still not working right and I was told to bring dry ice and a cooler to my next infusion. (It is a week from Tomorrow-on Wed. March 30th.) 

    Help!! What to do?? I was told that the caps will be cool, but just not cool enough and 15 min on dry ice will get them to the desired #. I was also told I could keep the caps in the Hefty bags on the dry ice, but to put cardboard between the ice and the bag, to protect the caps from the dry ice. I hope this is good, because I could put them in the plastic boxes on the dry ice. Any help here would be greatly appreciated. I only have 2 more treatments. Hate to buy a cooler for just 2 times. I wonder if I can rent one?

    Send any info my way to help.

    Keep Positive, Smile and Keep Laughing!

    Nancy

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    Maria:  Sounds like quite a challenge keeping the shampoo/conditioner off the roots.  How does one wash the bangs?

    I'm thinking of washing mine outside and having my hubby use a pitcher to wet/rinse it and that way I don't have to deal with my body being cold or as you said head over the laundry room sink. 

    Thanks for all the suggestions!

     Off to have the port put in now.  Cry

  • cmksocal
    cmksocal Member Posts: 163
    edited March 2011

    Nancy -- Without knowing how "cool" is "cool", I think I would allow 30 minutes for some quick freezing.  Just allowing that extra 15 minutes should decrease you stress level.  Coolers are pretty inexpensive, can you borrow one?  Too bad you are so far away -- I have 3 of them!

    Susan - I loved your post.  I remember reading so many of your posts when I found this site last May.  You were a couple of months ahead of me in PCC usage.  We have all learned so much from each other. 

    Today I had my 5th hair cut (trimming and shaping; roots colored) since starting all of this breast cancer stuff (yes I had a haircut during chemo because I had an event to attend that required I get my ratty ends trimmed up).    It is 6.5 months PFC and my hair has really filled in during the past month; my hairdresser was amazed.  She has been artfully trimming the length shorter to make it look fuller and today she didn't need to do that.  The back nearly touches the base of my neck.  The sides (which really thinned) cover my ears and are blended on a diagonal.  It is sorta of a 80's style cut; but who cares!  I have hair.

    Colleen

  • mdg
    mdg Member Posts: 1,468
    edited March 2011

    Arlene:  I have found it easy to wash bent over the tub.  When I do that, my hair hangs straight down and the roots are kind of covered because the hair is all pushed downward.  So unless I get up under and massage into the scalp, my longer hair seems to cover the roots.  I usually start with the hair hanging down which includes my bangs and then move to the top part and the back of my head.  I gently, loosely use my fingers to move the shampoo around.  I kind of get one hand on once side of the long hair hanging down and the other hand on the other side and gently rub my hands...very gently.  I also use a wide tooth comb to move the shampoo through my long hair and gently rub with both hands again.  As far as the conditioner, I try to work from the bottom up and again use the wide tooth comb gently.  So far, so good.   Good luck!  I am glad someone else is going through this with me.  PM me if you have questions or need to freak out about it!

  • littlepenguin60
    littlepenguin60 Member Posts: 16
    edited March 2011

    Thanks Ang7, ArleneA, and Annie... I do appreciate your kind comments and empathy. It was a difficult to decision to stop the PCCs and now I'm getting to see what being bald looks like and in my case it ain't pretty as they say! BUT, thank God for cute wigs. It's very surreal for me 'cause I was one of those people with the Hollywood hair as my hairdresser always said! Oh well, the Lord giveth and the Lord taketh away, right??!! Hopefully someday I'll have my hair back again; it will just take longer this way. Those of you doing so well with the caps, keep on keeping on -- it's awesome to save most of your hair. I must admit, it is a LOT less hassle without using the PCCs, BUT I will never like losing all of my hair. Fortunately tomorrow is treatment #5 out of 6. I just have to pray that I can stay healthy and withstand the last 2 treatments of FEC. I've done so well so far -- get a Neulasta shot after every treatment (body aches are not good) Wow, so exciting to think of being DONE with chemo -- praying for all of you and welcoming your prayers as well! :)) God bless.

    P.S. Still wondering why no one else seems to be on FEC...........any theories out there? I was ER+ and PR+, 3 of 4 nodes with micrometastises (sp?), tumor 7mm (<1cm) -- Stage IIa I think. FEC was recommended for my situation by Siteman Cancer Center (Barnes-Jewish Hospital) In St.Louis, MO and also MD Anderson (Texas) I realize there's more than way to choose treatment - just wondering........ :))

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    Thanks Maria and all!  Shampooing is going to be a lot of work.  Last good washing comes on Thursday or Friday since I start chemo on Monday!

    Wow, I am surprised at how miserable day 1 of the port is.  Hope it gets better soon. I can barely move that arm and the shoulder feels locked up.  I also didn't expect such a large area of stitches. 

    Arlene

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited March 2011

    Hi Arlene I rolled my shoulders like in yoga and that helped. The pain is gone today. I got it installed yesterday. Good luck and thinking of you

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    Thanks NMoss...I'll do the rolling motion even though it hurts.  Tylenol helped some.  I was expecting the wound to be smaller too!  Hubby is going to do reflexology on my feet.

    Good luck tomorrow!

  • adangel
    adangel Member Posts: 18
    edited March 2011

    Hello everyone,

    I had my first cycle of FEC yesterday complete with the alien looking cold cap.  Felt so strange being attached to what looked like an air con unit, set at -6 degrees!  It gave me such a headache but some paracetemol seemed to help.  It seriously extended the length of treatment so I'm hoping that it works.  I know I'm not supposed to wash it for at least 48 hours, but can it get wet and dry naturally?  They put so much conditioner in before putting on the cap that it now looks so terrible - course my new short cut doesn't help much either.  As luck would have it, just as I left the clinic yesterday, having a coffee with a friend, looking pretty grim with major hat head, I ran into an old colleague that I haven't seen in around 10 years!   He looked great.  He couldn't really return the favour.  : - (

    I don't have a take home cold cap - frankly never heard about them before reading this board.  The onc nurses are pretty pessimistic about the cap working with FEC - the E being the evil hair killing bastard!!  Nevertheless, it can't hurt.  I'm using a Phyto shampoo for thinning hair and an all natural hair boosting follicle treatment - again, they can't hurt.

     Any other tips, advice, jokes???

  • Ang7
    Ang7 Member Posts: 568
    edited March 2011

    Hey Arlene~

    Pamper yourself...

    I was the biggest baby ever after having my port put in.  I dropped my daughter at preschool and sat in my car crying to call my onc.  They said maybe it was the seat belt digging in? 

    No, I am just not very good with pain.  They did call in a pain reliever and I was better in about 2 days...

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    Hey ANG7:  Guess I'm a baby too but it is much better today and I survived with just Tylenol (I had plenty of pain pills left from the breast surgery for which I only used a couple). I did sleep sitting up on the couch last night because the shoulder hurt so bad.  Thanks for understanding - I was really angry yesterday thinking the doctor had screwed up.  Didn't anticipate this size of a wound.

    Next step, first chemo on Monday.  That is frightening!  Oh well!

    ADangel:  Where are you located?  Good luck!  Good idea about the Phyto shampoo.  I just picked up a couple of organic shampoos at CVS (one is Burt's Bees) so we'll see how those work.

    I also ordered a few skin care items from LindiSkin which is supposed to be great for the skin especially during chemo.

    Arlene

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    A friend who just finished breast cancer treatment sent this to me and worthy of getting the word out:

    Dr. Oz:  Precautions re Mammograms and Dental XRays / A Useful Warning


    On Wednesday, Dr. Oz had a show on the fastest growing cancer in women, thyroid cancer.  It was a very interesting program and he mentioned that the increase could possibly be related to the use of dental x-rays and mammograms.  He demonstrated that on the apron the dentist puts on you for your dental x-rays there is a little flap that can be lifted up and wrapped around your neck. Many dentists don't bother to use it.  Also, there is something called a "thyroid guard" for use during mammograms.  By coincidence, I had my yearly mammogram yesterday. I felt a little silly, but I asked about the guard and sure enough, the technician had one in a drawer. I asked why it wasn't routinely used. Answer: "I don't know.  You have to ask for it." Well, if I hadn't seen the show, how would I have known to ask? 

    Someone was nice enough to forward this to me. I hope you pass this on to your friends and family.      

  • leeann56
    leeann56 Member Posts: 51
    edited March 2011

    Hello everyone!

    Just finished my first chemo!!! Taking my last cap off in 15 minutes, started at 8:30  and it is now 5:30 now. Chemo went extremely well, I was so stressed out about the cap temps that i hardly paid attention to the hole chemo infussion. To all cap users, my head did not seem as cold as I thougth it would feel and some places even room temp when i took it off to change it. Did any one experience this? Stressing out about this plus some caps were not as cold as others.

  • leeann56
    leeann56 Member Posts: 51
    edited March 2011

    Hello everyone!

    Just finished my first chemo!!! Taking my last cap off in 15 minutes, started at 8:30  and it is now 5:30 now. Chemo went extremely well, I was so stressed out about the cap temps that i hardly paid attention to the hole chemo infussion. To all cap users, my head did not seem as cold as I thougth it would feel and some places even room temp when i took it off to change it. Did any one experience this? Stressing out about this plus some caps were not as cold as others.

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited March 2011

    Leeann  - congrats on your first chemo!  The first is always the worst...so much worry and anticipation of the worst. But, like others have said before me, chemo is so doable!

    Arlene - Good luck on Monday. I will be thinking of you!

    I am heading to a much needed vacation...the florida keys...hoping for warmth, sun, rest, and relaxation!  Hoping the wind does not blow my hair to much.  I did buy a hat!  

    Annie 

  • arlenea
    arlenea Member Posts: 1,150
    edited March 2011

    Have a great time Annie.  Perfect time for the Keys - I grew up down there!  :)

    One down Leanne.  I haven't started yet so can't answer your question but I bet you are fine and I am hoping that my sessions go quickly too as I keep busy changing out the ElastoGels every 20-30 minutes.

    Keep us posted! 

  • leeann56
    leeann56 Member Posts: 51
    edited March 2011

    Arlene,

    You will do just fine, It went so smooth and like I said you get really focused on the caps and not the chemo. I used elastogels also so let me know how it goes for you. You will be amazed at how quickly 20-30 minutes go by.

  • mdg
    mdg Member Posts: 1,468
    edited March 2011

    Leanne:  I did treatment #2 today and am using the cold caps.  We have a freezer at my oncology office and they supply caps there.  We do bring a long a thermometer and my husband checks each cap.  They all ranged between -32 and -34 so it was good.  In wearing them sometimes it just didn't feel like it was cold all over my head.  It was like parts of my head would feel cold and other parts not so cold.  I worried about this for the last two weeks.  So far I have not really had any shedding and my first TC treatment was 3/2.  I keep waiting for a major shed...it could still happen.  Who knows!  I have lost other body hair on my body though so I know the chemo is effecting hair - just not on my head which is the goal.  Hang tight.....it will work!  PM if you want to chat. 

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