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Cold Caps Users Past and Present, to Save Hair

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Comments

  • LeesaAnn
    LeesaAnn Member Posts: 40
    edited December 2011

    I'm 11 days into my first TC treatment and am nervously approaching the time when hair should start falling out. Feeling a bit fearful that I didn't do everything just right, or that I'm some anomaly, and all my hair is going to fall out.

    Also, one of my side effects has been a low grade fever, and I'm wondering how much that might be messing with hair retention. 

    Thank you to all of you who've gone through this and are so helpful and supportive. This is nerve wracking! LOL!

  • Tiki
    Tiki Member Posts: 95
    edited December 2011

    Few tips for the new ladies



    1- Chew ice to avoid sore throat and lemon cough drops during treatment.

    2-use frozen peas and L-Glutamine to avoid nails changes and problems with the lining of the intestine

    3- get extra gel band to cover nape of the neck and around your ears.

    4- bring your gallon of water and during treatment drink a cup of water every 1/2 hr.

    5-wash your hair only once a week and dilute shampoo.

    6- take extra warm clothes and an electric blanket.

    7- Emend was great for nauseas, it is a little bit expensive but it is worth it. I paid $50 for 3 pills in every treatment, in addition with other anti nauseas medication through IV . I also drink ginger tea for nauseas.

    8- take Silica and Biotin for hair growth and keep hair healthy.



    I hope this help you,



    Tiki

  • Tiki
    Tiki Member Posts: 95
    edited December 2011

    LeesaAnn- on the days that I was shedding a lot I took an anxiety medication.



    Blessing,



    Tiki

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

    Thanks for the port comments.  To the new ladies, I've finished chemo and just doing Herceptin but having problems with it so they have stopped it (again) and in the interim I just didn't know how often I should go for flushing and I have my answer.  Thanks!  I'lll know in a day or so if they'll discontinue the Herceptin and then I'll make the decision as to whether to remove the port or not.  The port is a true Godsend for me and I have wonderful veins - the bloodbanks love me.

  • soccergirl
    soccergirl Member Posts: 190
    edited December 2011

    Arlene: What kind of problems with Herceptin?  Did  you feel side effects or does the ultra sound indicate problems?  I finished radition this week and will have Herceptin alone from now on until July.    

  • soccergirl
    soccergirl Member Posts: 190
    edited December 2011

    Arlene: Does herceptin affect anxiety?  I can't tell if I am anxious from having cancer or the drugs?

  • luckyjnjmom
    luckyjnjmom Member Posts: 114
    edited December 2011

    Soccergirl,

    I have the drug info sheet on herceptin in front of me now - anxiety isn't listed. There are plenty other SE, but not that one. I have had my share of anxiety gonig through this - I think some of that's normal. But if it's really disruptive to your life, you may want to discuss with your dr.

    Take care,

    Lucky

  • soccergirl
    soccergirl Member Posts: 190
    edited December 2011

    Thanks Lucky

  • luckyjnjmom
    luckyjnjmom Member Posts: 114
    edited December 2011

    I'm 11 days post 2nd chemo T/C plus herceptin and my palms have started itching like crazy - I had hives last night - but benadryl took care of that. Anyone on this regimen have this before?

    thanks,

    Lucky

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

    Soccergirl:  I don't think Herceptin causes anxiety so probably just the whole process getting to you).  Occasionally I get anxious and take 1/2 of a .25mg Xanax and that works well.  My problems with the Herceptin are heart as my EF keeps going down - it started at 77.6 and now down to 50 so looks like I'm done with Herceptin but since the year of treatment is just a made up time and no one has ever tested to see how long it is needed, who knows what the outcome.  Guess it could be determined that it is needed more or less than the year.  I don't believe there are even any trials ongoing to determine how long is needed and my pea brain asks how they would even test that one.

    Lucky:  I was on TCH also and no itchy palms. 

  • luckyjnjmom
    luckyjnjmom Member Posts: 114
    edited December 2011

    Arlene,

    Thanks - I guess my immune system is worn out and trying to fight what ever I've been exposed to that is making me itch.

    Sorry to hear about the herceptin. Do they say your function will come back to  normal now that you're off of it?

    Take care,

    Lucky

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

    Lucky:  hope the itching stops soon.  There are no guarantees the heart function will return to normal but I'm hopeful.

  • soccergirl
    soccergirl Member Posts: 190
    edited December 2011

    Arlene: That is very scary.  I agree with you on the lack of knowledge on Herceptin. I had my radiation on my heart side, so I do worry about all this treatment.  I figured  out my anxiety is from weening myself off Klonopin!  I want to be medication free.  I was taking 1mg for sleeping but did not realize how addictive this stuff is.  I took .25mg last night and can feel it. 

    Lucky- I battled a terrible rash day 8 of my third TCH infusion. 

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

    I got a really bad rash after chemo #3. It lasted for almost three months. I was on taxotere and cytoxan. I used Sarna lotion, steroids and anithistamines to help but it was horrible. I hope yours doent last for three months!

  • Tiki
    Tiki Member Posts: 95
    edited December 2011

    24 weeks PFC and finally today for the very first time I wash my hair with warm water. In 2 more weeks I am planning to color my hair, I will post new pictures. This is to motivate it the new ladies, please have faith you will get there. I have a lot of new hair growing. :). Never went bald. Or had to wear a wig.



    Blessings,



    Tiki



  • Tiki
    Tiki Member Posts: 95
    edited December 2011

    Soccergirl- I take Melatonin when I need it , it is natural and it works.



    Tiki

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

    I got the nasty Taxotere rash after each chemo and it was gone by the next one and the pattern repeated.  Just used a little cortizone cream which helped the itching but it sure looked nasty for a few days.

    Ah, the wonderous memories.  :)

  • Ralsper
    Ralsper Member Posts: 131
    edited December 2011

    11 days PCF I colored my hair (remember I lost about 85% after AC and during 12 Taxol it came back and I have not lost any hair for the last 2 months) and washed my hair with warm water.Please keep in mind that I am doing my own "protocol" and still "experimenting".

  • Laura5
    Laura5 Member Posts: 419
    edited December 2011

    Ralston, 85%?? What did Frank attribute that to?

  • luckyjnjmom
    luckyjnjmom Member Posts: 114
    edited December 2011

    Arlene and MDG,

    Thanks! It's reassuring to hear that what I'm experiencing is the new normal with T/C plus Herceptin. I'm sending my husband to Walgreens for hydrocortisone cream as we speak. I can't wait until this is a fading memory. Take good care and thanks again for the info! So glad that this forum exists to allow us all to learn from the experiences of others in this sisterhood.

    Lucky

  • Ralsper
    Ralsper Member Posts: 131
    edited December 2011

    Laura5 - Frank really didn't say anything (I think he tried to figure out if I was doing something wrong) but I followed protocol to a "T" during AC. After the 3rd week I shed everyday the whole time. The only suggestion was to decrease the temperature and use a piece of silk fabric to protect my scalp. I was dissapointed, but I already knew that most woman have a hard time keeping their hair after AC. The good news is that the weekly Taxol was very gentle and I never got to see myself bald. By the time a finished Taxol I already have grown my hair back (short and really "dry looking"), but my scalp is completly covered.

  • serenitywisdom
    serenitywisdom Member Posts: 109
    edited December 2011

    Hi everyone,

    I am now 5 months PFC from the TCH.  I washed my hair in tepid water  yesterday and colored it a week ago and so far all is good.  It is dry but the color is back to normal, no more grey black roots and I am quite happy about that.  I style and blow dry my hair with warm air on low and it looks a lot better.  The wings/sideburns  look wierd but the longer hair covers them up.  Hair is still quite dry= Ideas welcommed on how to moisturize the hair.  

    Re herceptin,  I too have had my herceptin stopped due to MUGA test showing decreased heart function and also stress echo not normal. But this is apparently really rare- only about 2-4% of those getting chemo get this problem and the heart damage generally is reversible they say.   I think there is no real good study to show that one year of herceptin is absolutely necessary. Nobody has done any longitudinal study to really compare if 3 months vs one year for example of herceptin makles a difference on re ocurrence or survivability.  I am going to see another cardiologist to get his take on needing more heart tests, restarting herceptin and getting the reconstructive surgery which was delayed.    My advice to those of you just starting chemo- make sure they get a baseline and do routine heart monitoring like MUGA's or stress echo's.  Do everything you can to not gain weight as that adds to risk factor of cancer, exercise.  I am walkng my new one year old  lab retriever a lot.  Actually he is walking me.   

  • Tiki
    Tiki Member Posts: 95
    edited December 2011

    Serenitywisdom-did you color your hair with regular color? I will be 6months next week and I am trying to decide if I do it this week or next week. I lost around 50-60% of my hair. But now it looks very full except for nape of the neck that I have to wait few more months so it can be around the same length of my hair. Meanwhile, I used hair extension for a little bit of fullness.



    Tiki

  • soccergirl
    soccergirl Member Posts: 190
    edited December 2011

    Serenity Wisdom and Tiki:

    I will be 11 weeks Post Pcc this Thursday.  My hair stopped shedding around week 5.  I need to color very bad but because I wear my hair blond, i can only use harsher products. I might have  colorist test a few foils next week and see how that goes.

    In terms of dryness: I am using deep conditioner almost daily and moisturizing products.  I use heat only on my bangs and let the rest air dry.  My hair is growing very fast and will trim again next week.  I feel like I need to cut off the old hair slowly.  I put organic hair oil ( Goldilocks Hair Oil) in my hair when I go to sleep, use satin pillow case and now that I am done with radiation, I take more vitamins.  The best hair mask  I use is Carole's Daughter  Hair Repair Mask.  This line is made for ethnic dry hair and my hair loves the treatments.  I am going to try the leavin conditioner from this line soon.  Be aware that products with silicone do not wash out with sulfate free shampoo.  This can cause a build up on the scalp.  It is hard to find products with out  silicone.  I like Paul Mitchel Awuphi Karatin Treatment , Wen Cleansing Conditioner, Ojon Conditioner  and Trader Joes Clarifying Shampoo.  I use the Clarifying shampoo every 8 days to remove build up.   

  • luckyjnjmom
    luckyjnjmom Member Posts: 114
    edited December 2011

    Can someone tell me how to use the frozen peas to avoid nail loss. I'm on T/C plus herceptin x 4 - I've done 2 treatments already - is it for sure that my nails will lift up and fall off - ugh! and if I use the peas for the next 2 treatments will that stop it from happening? and do I just hold them and place them on my feet during Taxotere or Cytoxan or both? Sorry for so many questions - seems like every day I find out one more thing to hate about chemo -

    thanks,

    Lucky

  • soccergirl
    soccergirl Member Posts: 190
    edited December 2011

    Lucky -  i did not freeze nails or toenails during treatment.  My nails were fine, one toenail turned black but never fell off. I worked out almost everyday and my toenails were more vulnerable to chemo side effects.  I took Biotin, Silica and Max Hair Vitamins and my nails looked good.  

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

    Lucky:  I used the peas (got them at CVS).  I put them in socks and slide my hands and feet in them and they were more painful than the caps but I had absolutely no problems with my nails except a bit of brittleness and even to this day (6 months after chemo).  Nurses didn't even laugh at me.  I kept them on the ice all through the taxotere.

    Keep asking as that's why we are all here to help you from our experiences.

    Arlene

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

    I used ice in baggies on fingers and toes. I put my toes on top of a bag of ice on the floor and then folded part of the bag with ice on top of my toes. For hands I took a baggy if ice and grabbed it with fingers and had my husband put a sock over each hand. I pushed my fingers right into the ice. I did wear light cotton gloves on hands and a light pair of socks on feet. I just got ice from the ice machine at the med onc office. Icing fingers and toes was worse than wearing the caps in my opinion. I iced and did TC x4 and my nails were great in fact my med onc thought I got fake ones because they looked so perfect. I had no issues.

  • luckyjnjmom
    luckyjnjmom Member Posts: 114
    edited December 2011

    Thank you everyone for your information - I think I can handle my fingers in ice - but the thought of my toes makes me shiver - I always have cold feet - gonna have to thinkabout that one.

    Thanks again and take care everyone,

    Lucky

  • Laura5
    Laura5 Member Posts: 419
    edited December 2011

    lucky, I didn't ice fingers or toes and didn't have a problem. Not sure how common that side effect is. I was on TCH x6.

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