Eyelids Twitching

13»

Comments

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    abita said:

    Capecitabine

    I don't get capecitabine, so maybe that is why. My at home infusion is the 5fu, I think. I get the device that administers it when I finish the in hospital treatment. I wear it for 46 hours, then go back to have it removed. My anti-nausea in the drip lasts for 3 days. I have a "cousin" of it in pills at home, just in case. 

    This forum helps a lot. I have a good support system, but they can't help me with my fears and questions the same as people who are going through it or who have been there. 

    abita

    you are getting what my husband is the odanestron is Zofran my husband takes it even if he isn't feeling nauseous  until about Wednesday just to be safe. He gets connected on Thursday and Saturday morning he starts the zofran he also takes oral steroids Friday and Saturday. He said he feels a little uneasy in the morning so eating helps as well. I hope you continue to feel well!

    ps

    your cat in the picture has beautiful colors! I am a huge animal lover. 

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    abita said:

    Capecitabine

    I don't get capecitabine, so maybe that is why. My at home infusion is the 5fu, I think. I get the device that administers it when I finish the in hospital treatment. I wear it for 46 hours, then go back to have it removed. My anti-nausea in the drip lasts for 3 days. I have a "cousin" of it in pills at home, just in case. 

    This forum helps a lot. I have a good support system, but they can't help me with my fears and questions the same as people who are going through it or who have been there. 

    Capecitabine is the pill form

    Capecitabine is the pill form of 5FU. I chose the pill regimen for the convenience. I don't want to go back after 48 hours to disconnect the pump. Also if I do get a reaction or too sick I can just stop taking the pill, not have to worry about rushing to the ER. The pill also gives you less side effects of mouth sore, hair loss, nausea, diarrhea and constipation. I take capecitabine for 2 weeks then 1 week off. On my week off I have to call the CVS Specialty for my next cycle refill and they deliver to my house. 

    This is a wonderful forum. We get advice and support from one another. We are there for each other. :)

  • abita
    abita Member Posts: 1,152 Member

    Capecitabine is the pill form

    Capecitabine is the pill form of 5FU. I chose the pill regimen for the convenience. I don't want to go back after 48 hours to disconnect the pump. Also if I do get a reaction or too sick I can just stop taking the pill, not have to worry about rushing to the ER. The pill also gives you less side effects of mouth sore, hair loss, nausea, diarrhea and constipation. I take capecitabine for 2 weeks then 1 week off. On my week off I have to call the CVS Specialty for my next cycle refill and they deliver to my house. 

    This is a wonderful forum. We get advice and support from one another. We are there for each other. :)

    I am hoping not to lose much

    I am hoping not to lose much hair. Sounds so vain when there are so many bigger issues to think about.

  • Mikenh
    Mikenh Member Posts: 777
    abita said:

    I am hoping not to lose much

    I am hoping not to lose much hair. Sounds so vain when there are so many bigger issues to think about.

    When I was on Neo-Adjuvant

    When I was on Neo-Adjuvant Xeloda, I had the opposite problem. Hair came in pretty strongly and I couldn't shave it close.

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    abita said:

    I am hoping not to lose much

    I am hoping not to lose much hair. Sounds so vain when there are so many bigger issues to think about.

    Hair loss

    I lost most of the hair from my body. I kept a few patches on my legs, which looked totally weird. About 90% of my head hair fell out, so I ended up looking like Gollum. No kidding!  Thats when I shaved my head, and the picture you see was taken  (from a video) the day I shaved it off. 

    Before my hair fell out, I was of the attitude 'It won't matter', but when I saw it falling out in clumps, I was devestated. It was a real gut punch. I got over it though, and rocked the shaved head. 

    My hair grew back curly, then fell out and grew in dead straight. I've never had dead straight hair before. But alas, I'll take straight hair and life. 

    Tru

  • abita
    abita Member Posts: 1,152 Member
    Trubrit said:

    Hair loss

    I lost most of the hair from my body. I kept a few patches on my legs, which looked totally weird. About 90% of my head hair fell out, so I ended up looking like Gollum. No kidding!  Thats when I shaved my head, and the picture you see was taken  (from a video) the day I shaved it off. 

    Before my hair fell out, I was of the attitude 'It won't matter', but when I saw it falling out in clumps, I was devestated. It was a real gut punch. I got over it though, and rocked the shaved head. 

    My hair grew back curly, then fell out and grew in dead straight. I've never had dead straight hair before. But alas, I'll take straight hair and life. 

    Tru

    What were you taking? My

    What were you taking? My oncologist said for mine, leucovrin, oxiplatin, and 5fu that i will lose some hair, but since my hair is thick, should not get to that point. He also said he doubts I will lose eyelashes or eyebrows. But like you, I feel if it does, I will remind myself that the only thing that matters is surviving. I just had a similar talk aobut my stomach scar. I don't care. Don't love it, but my focus is on getting passed this and living a healthy, happy, long life. 

  • abita
    abita Member Posts: 1,152 Member
    Trubrit said:

    Not to scare you, but

    Here is a picture of me during treatment (FOLFOX with 5FU pump).  So yeah, it doen't happen to everyone, but I went from a nice thick head of hair, to a Gollum like do. 

    Gone tomorrow

    Sorry, but worth it since you

    Sorry, but worth it since you made it through. The Saturday before i was admitted to the hospital, I told my hairdresser that I felt my hair was finally long enough. How sadly ironic. It is just above my waist and a beautiful shade of red. The worst was when I was in the hospital and nurses kept telling me they loved my hair. I could only think, "for now", when they said it. Did you go the wig route. I am not sure that I will. I don't even think about it that much though. Right now my thoughts are only focused on praying that the lesions shrink enough in the first 4 rounds to be removed with surgery. My doctors suggested I only think about one step at a time. While I do know and think about the whole picture, keeping with the one step really seems to help me keep a positive attitude.

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    One step at a time is the best advice

    And you may not lose one single hair on your head. 

    No, I didn't wear a wig; and I only wore a hat if I was out in direct sunlight. I hate anything (but hair) on my hair at the best of times. 

    And yes, it was worth it. Even now that it has grown in straight, I am not complaining. 

    I just hate it when a Doctor tells their patient they won't lose their hair when on FOLFOX - I can't speak for any other chemo cocktail -  because for some of us, it happened, and being prepared for it to happen takes the sting out of a very distressful event. 

    Tru

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    edited December 2017 #50
    I know some chemo combos are

    I know some chemo combos are likely to cause hair loss.  Also different doses can cause from either hair thinning to complete baldness. I'm not sure about other cancer but seems that almost all breast cancer patients always lose hair from their chemo. Both my surgeon and oncologist told me that there is a small percentage of colon cancer patients do lose their hair completely but most just have hair thin out. I noticed my hair thinned out a bit since my treatment started. 

    Also I read that chemo can cause the change of hair texture.  Curly to straight, thin to thick, vice versa. 

    Tru, you are much prettier than Gollum! 

  • Nazareth
    Nazareth Member Posts: 88 Member

    Oh great and I'm going back

    Oh great and I'm going back to work next week. :/ I also like layering instead of wearing one bulky sweater.

    And another lesson I learned a long time ago about when you're in the bank is that never call out your friend named Rob, you'll get some nervous looks! 

    [[When I left the clinic and

    [[When I left the clinic and as soon as exposed to the cold air, my eyelids twitched and fluttered.]]

    Yup- my eyes started stinging badly when exposed to the air after just my first treatment- also they watered constantly- but that went away after a few days- around 5 or so- OPne thing I did was cup my hands over my mouth and eyes, and breathed out warm air which helped warm the eyes some- it helped a little- looked funny, but helped

    [[when you're in the bank is that never call out your friend named Rob, you'll get some nervous looks!]]

    Yeah, I've gotta ask my friend 'stick'em up' to stay home when I go banking-

  • Trubrit
    Trubrit Member Posts: 5,796 Member

    I know some chemo combos are

    I know some chemo combos are likely to cause hair loss.  Also different doses can cause from either hair thinning to complete baldness. I'm not sure about other cancer but seems that almost all breast cancer patients always lose hair from their chemo. Both my surgeon and oncologist told me that there is a small percentage of colon cancer patients do lose their hair completely but most just have hair thin out. I noticed my hair thinned out a bit since my treatment started. 

    Also I read that chemo can cause the change of hair texture.  Curly to straight, thin to thick, vice versa. 

    Tru, you are much prettier than Gollum! 

    Its the teeth

    I have them, Gollum doesn't Gollum emoticon (Horror Emoticons)

    Thanks Lily. 

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    Nazareth said:

    [[When I left the clinic and

    [[When I left the clinic and as soon as exposed to the cold air, my eyelids twitched and fluttered.]]

    Yup- my eyes started stinging badly when exposed to the air after just my first treatment- also they watered constantly- but that went away after a few days- around 5 or so- OPne thing I did was cup my hands over my mouth and eyes, and breathed out warm air which helped warm the eyes some- it helped a little- looked funny, but helped

    [[when you're in the bank is that never call out your friend named Rob, you'll get some nervous looks!]]

    Yeah, I've gotta ask my friend 'stick'em up' to stay home when I go banking-

    Yup my eye lids burn when I

    Yup my eye lids burn when I tear up. Don't chop onions! Lol

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    Not to scare you, but

    Here is a picture of me during treatment (FOLFOX with 5FU pump).  So yeah, it doen't happen to everyone, but I went from a nice thick head of hair, to a Gollum like do. 

    Gone tomorrow