October 2011 Chemo group

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  • Carla9112
    Carla9112 Member Posts: 162
    edited February 2012

    Hi everyone - I've been away for a couple of days since work has been so crazy.  I'm trying really hard not to get back into my old routine of working too much.  By the end of the week I feel like I've been hit by a bus.

    Lori - how frustrating to get a mammogram notice after everything you've been through.  The good news is chemo is over.  Yippee!!

    cfdr - my nails are gross too, especially toes.  Oh well, I just consider it more battle scars. 

    Tappy - I have peach fuzz too but it just doesn't seem to be growing.  It sounds like from Nancy's post however that it is going to take a while.  Fran - you mentioned the moroccan oil.  I bought shampoo with this name but it sounds like you are using a true oil?  If so, where did you get it?  Is it helping with the hair growth?  I'm almost ready to go bald just because I am so sick of wig/hats/scarves.  I almost whipped my scarf off at work yesterday but just wasn't quite brave enough.

    Question - does anybody have random eye twitching other than me.  I've noticed that it's worse this last week.  I think it's from the chemo but seems like it would be disappearing since I'm 4 weeks out from the last treatment.  So annoying.

    Hope you all have a great weekend!

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  • cfdr
    cfdr Member Posts: 549
    edited February 2012

    Carla, I have sometimes gotten eye twitching during stressful times in my life. And goodness knows all of this can be quite stressful!

    Anybody else sleeping a LOT? My energy level is OK most days now, despite occasional throwbacks, but I am also sleeping about 10 hours a night. When I was in the throes of pneumounia I was sleeping 12 hours a night, so I guess this is an improvement.

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  • stjude10
    stjude10 Member Posts: 390
    edited February 2012

    Tappy, I'm still taking a xanax at bedtime to help me relax...am not ready to give that up yet!

    cfdr, I sleep ok at night for around 7-8 hrs, but I also nap almost every day for 2-3 hrs. Every once in a while, I can get by w/out the nap, but not very often.

    Carla, I still only have a bit of fuzz. I actually think it looks thinner now than when I was going thru the chemo. I quickly painted my toenails before the last tx so I wouldn't be grossed out if I were going to lose any. I have a couple of fingernails that are just now starting to act a bit funky. Will have to wait and see.

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  • fredntan
    fredntan Member Posts: 1,821
    edited February 2012

    I've decided to travel for me rads. I met the doc at johns Hopkins last week. He is rad breast expert in rads. He graduated from Harvard. Does research. The building and equip os new. I love his team. I can stay free at the hope lodge. Ill need five weeks treatments. I can come home on weekends. I can offer my work some weekends. I havnt told them i'll be off again.

    I just don't feel I can trust my local docs anymore. Im moving all my docs up to johns Hopkins. Its a long drive. Through horrible DC traffic. But my sister doesn't mind driving me. She's moved most of her docs up there.



    There may be no difference in the rads. But I can't take any chances anymore plus therapy a gym that has free membership. Free yoga painting classes. Free shuttle to treatment center. Im excited about living in big city

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  • cfdr
    cfdr Member Posts: 549
    edited February 2012

    Argh, lost two more fingernails today. Bought cheap white cotton gloves at Walgreens to protect the tender quicks and the remaining semi-detached fingernails. Until this month I never realized how much I rely on my fingernails for stupid little tasks like getting the label off an apple.

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  • fredntan
    fredntan Member Posts: 1,821
    edited February 2012

    Is any one else having cravings? I want some NYC pizza and some korean bbq and some nyc street food.

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  • perts1
    perts1 Member Posts: 62
    edited February 2012

    Mexican food.  Hot Green Chile.  I think about (and have it often) green chile every day.  On hamburgers, eggs, burritos, cheese - on everything!

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  • fredntan
    fredntan Member Posts: 1,821
    edited February 2012

    I want a chili reyennos. You know that spicy deepchili fried mexican pepper.

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  • stjude10
    stjude10 Member Posts: 390
    edited February 2012

    cfdr, sorry about your fingernails. Here's hoping you don't lose anymore and they come back quickly!

    Fran, my craving is Chinese. I could eat it everyday for every meal!

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  • wildrumara
    wildrumara Member Posts: 450
    edited February 2012

    Carla -  Yes, I have had eye twitching...but it seems to have stopped the last week or so. 

    My hair is really starting to grow back.....I'm not quite to the point where I can go out without a hat, but i would imagine in the next month, I could....

    I am 9 days out till my BMX......starting to get really nervous! 

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  • TAPPY
    TAPPY Member Posts: 283
    edited February 2012

    My eyes are super dry - which makes my vision bad :(

    So far my nails are ok, lots of neorapthy in my fingers however.  I did go and have a pedicure, I told my girl to be easy on them...

    It is so hot here I cant stand wigs, I am wearing bandanas (the large ones) - that I can tuck under.  I have to wear the wigs to work...but they are hot so I am keeping fans on in my office...

    Iam hot flashing like crazy at night, sure it will be worse when I start on Tamox.....

    WishI could sleep like I used to - I wake up all the time.

    Happy Mardi Gras everyone.

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  • barbyjean
    barbyjean Member Posts: 108
    edited February 2012

    Hi, everyone. I've been so exhausted that I don't open the computer most days, but I really miss the posts here.

    I'm having all kinds of chemo leftovers - my eyes water a LOT, makes it hard to see, and also twitch from time to time. My fingernails are all coming loose, and catch on everything. But if I trim them down that feels weird too. It is so hard to do things without nails!

    Does anyone have really tight painful muscles? Mine hurt every time I move, and stretching and exercise don't relieve it at all. This is probably my worst symptom now. Or maybe the fatigue is worse. I am driving 100 miles each way to radiation every day - well, I have friends driving me, bless them!! But all I do with the rest of my day is lay on the couch and watch bad TV. I'm not sure how much of the fatigue is from radiation and how much is from traveling, it really doesn't matter I guess, but I'm so tired of being so tired. The radiation itself is not bad at all compared to the chemo!  Fran, I'm glad you switched to doctors and hospital you feel good about. I think it's important to get the best care we can find. We deserve it!

     I admire all of you who are working through all of this. I can't imagine trying to do that.

    Keep hanging in, we are getting close to the end of this!

    Barb 

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  • WIMusicMaker
    WIMusicMaker Member Posts: 78
    edited February 2012

    Hi

    Those of you still doing chemo-I wish for you very few side effects! You are almost done! 

    I have finished 20 of 33 rads. So far the only problems are a slight rash broke out on my chest, which they have a cream for, and I am finding that I tired more easily each day. I also have tight muscles and joints! Barb, I was wondering whether it was from chemo or something new from radiation. I am sorry you have this problem too. 

    My right eye twitched a lot during chemo and it continued for the first 4 weeks after I was done, but it has not twitched in weeks. I still need to take prilosec every day. After my last chemo I had to double my dose because my stomach felt like popcorn was popping! I tried to go back to my 1/2 dose at the beginning of February and my stomach still couldn't handle it. I wonder how long I will have to keep taking it? 

    My husband and I finally went out to celebrate being done with chemo last weekend. I had my first drink in months-it is a favorite of mine-it didn't taste good to me. Maybe someone is trying to tell me not to drink!

    Take care! Mary 

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  • stjude10
    stjude10 Member Posts: 390
    edited February 2012

    Finished chemo about 2 wks ago. Still very tired. I take a long nap every day. I almost think I'm more tired now than when I was going thru chemo. I am amused at the people who think since I finished chemo that by now I should be back to my old self. "Why are you still so tired all the time", "When do you think you'll be back to normal", "Your stamina should be back anytime". Ugh! It's kinda getting where I don't even want to talk to people anymore. They just don't get it. Oh, and lots of questions about my hair and how fast is it growing. I wish it was growing at all, I think I'm still losing it. May I not be as ignorant as my friends and family when they are in crisis.

    Mary, congrats on your celebration out w/hubby!

    Thanks for letting me rant gals. I can only bite my tongue for so long.

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  • fredntan
    fredntan Member Posts: 1,821
    edited February 2012

    I've only got one more taxol next week.



    Im not really feeling tired. I think the daily walks have helped.I'm otherwise not doing very much.cooking cleaning laundry. This family is on for big shock when I go back to work in march.

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  • Moonflower83
    Moonflower83 Member Posts: 92
    edited February 2012

    It´s normal to feel tired, I still do! I don´t know if this is a SE from chemo or a SE  from rads+ Tamoxifen. But I try to exercise ever day and also go to bed for an hour or two after rads, because my appointment is at 7:50 in the morning and it´s getting harder every day to get out of bed.

    My heavy legs seem to be chemo leftovers. It just does not get better. Sometimes I feel really old.And I have hot flashes because of Tamoxifen and it´s getting worse. This night I woke up 5 times with a wet shirt and a wet head. I don´t know how to manage this SE. I hope it will get better in the future.

    My lashes are getting thinner and thinner, I´m waiting for them to fall out because I know it will happen and I want it to happen soon, so they can grow again. 

    stjude: Congrats! You finished chemo!

    Fran: You are nearly there. Just 1 to go, only one more week and then it will be over!

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  • TAPPY
    TAPPY Member Posts: 283
    edited February 2012

    had my follow up - Doc said it will take up to 6 months before all the chemo effects are less :(

    I am dead dog tired by the end of the week....

    Start Tamox on Sat - dreading it.

    Doc also told me I will see him every other month unless I have issues...he said there is really no test (blood - tumor markers) - that will show I have a reoccurance...I said they are pretty unreliable - I just have to be really aware of my body etc...I wish I could get a scan.

    He also wants me off the Xanax....thank you freaking Whitney Houston...he said to start weaning my self...I guess he is right.

    Also does any one know al the meds you cant take with Tamox...I read something about Benedryl ?

    Also there is supposed to be a Chinese herb that helps hair growth ..anyone heard about that ???

    Hope eveyr one gets some rest and has a good weekend. 

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  • stjude10
    stjude10 Member Posts: 390
    edited February 2012

    Tappy, I'm also dog tired, but every day. I start my Tamox next Tues., right behind you. I am loving my xanax at bedtime, but I'm sure I'll be right behind you with that too!

    I have heard that Biotin is supposed to be good for your hair growth and nails so I bought some. Have only been taking it for 2 days and so far no hair. Guess it's gonna take more time!

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  • Carla9112
    Carla9112 Member Posts: 162
    edited February 2012

    Hi everyone - it so great to hear from everybody.  Glad to see that I'm not the only one that is having hot flashes like crazy, STILL losing eyebrowns/eyelashes and doesn't have much hair yet.  Urgh - I'm so sick of this s#$%.  I know there is a lot to be thankful for but somedays I just can't handle it and have an emotional breakdown.  Afterwards I feel better and can move forward.

    I'm glad to hear that radiation isn't so bad.  I start next week.  Sounds like fatigue is the biggest SE from it.  I think I can handle that - at least it's not chemo! :)

    I hope everyone has a great weekend.  Spring is on its way and by then we'll have all of this stuff behind us.  That just makes me happy!

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  • cfdr
    cfdr Member Posts: 549
    edited February 2012

    My radiation nurse said that people don't start to feel "normal" after chemo (mostly talking about fatigue) for 6 months to a year later. That said, I'm about 7 weeks out and I'm starting to feel pretty good. Hiking longer, started running again, able to keep the house clean. We had a busy week this week, went out three nights and had a small party here a fourth night. I did lie down a little while on Thursday, but it felt like a normal "up past my bedtime" tired, not chemo fatigue. By Friday night I think my husband was just as tired as I was, we just sat around reading and nibbled leftover party food for dinner.

    My hair is coming in thicker; I briefly lost some brows and lashes but that seemed to stop. Nails are a total disaster.

    I go for my first post-treatment MRI on Monday...crossing my fingers!

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  • cfdr
    cfdr Member Posts: 549
    edited February 2012

    My radiation nurse said that people don't start to feel "normal" after chemo (mostly talking about fatigue) for 6 months to a year later. That said, I'm about 7 weeks out and I'm starting to feel pretty good. Hiking longer, started running again, able to keep the house clean. We had a busy week this week, went out three nights and had a small party here a fourth night. I did lie down a little while on Thursday, but it felt like a normal "up past my bedtime" tired, not chemo fatigue. By Friday night I think my husband was just as tired as I was, we just sat around reading and nibbled leftover party food for dinner.

    My hair is coming in thicker; I briefly lost some brows and lashes but that seemed to stop. Nails are a total disaster.

    I go for my first post-treatment MRI on Monday...crossing my fingers!

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  • TAPPY
    TAPPY Member Posts: 283
    edited February 2012

    Lori where did you get the Biotin at ?

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  • stjude10
    stjude10 Member Posts: 390
    edited February 2012

    Tappy, I got it at WalMart. It was $6 here, and it's 5000mcg. I take 1 a day.

    cfdr, I'm on the hair watch. My nails are fine, but eyelashes and brows, all gone. Went out to meet friends last night. First time to stay out til 11 w/out napping before going. I think that's progress!

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  • sherrybaby
    sherrybaby Member Posts: 80
    edited February 2012

    Just checking in to see how everyone is doing. Fran, so glad that your last Taxol is this week!!!

    My brows and lashes have decided to complete their migration off my face in the last week or so. I think it makes me look so much stranger especially since the hair on my head is actually growing back now. I also had to shave my legs for the first time in 3 months. Took me 2 days to remember where I had put my razor. ;)

    Hope everyone has a good week!! 

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  • fredntan
    fredntan Member Posts: 1,821
    edited February 2012

    Whew went today for my last TE fill and spoke to my doc about my choices for reconstruction. I had thought I was getting a silicon or saline exchange when my six months was up after rads. But he thought the deip thing would be better. I didn't start with this doc. But he said the sx is a three day stay in hospital. But he thinks it will give me a more natural shape etc. I've got my appt set up for simulation next week. Have decided to do rads away from home.



    I saw the RO a few weeks ago at johns hopkins. I may never know if rads is same as at home.but ifeel horribly let down, angry about how my docs at home were monitoring my BC for two years and never put a needle in it until I felt it. its very hard for me to trust doctors now.

    Is anyone else doing the deip?

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  • fredntan
    fredntan Member Posts: 1,821
    edited February 2012

    I got a new wig today. Hated my other ones. I think it looks cute. Was only 24$. Then I got carded buying beer at giant! He was a new checkout boy. Didn't know me.





    Hows hair growth coming on every one else.



    Oh I discovered something to do with my lashes. They are really short and thin. I had some clear mascara and I dipped the clear wand in the regular mascara. Added just a little color to my lashes

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  • barbyjean
    barbyjean Member Posts: 108
    edited February 2012

    Hi, I want to share something that worked for me before cancer. I took sublingual B complex and it made my hair and nails grow really fast. I got it at Wal-Mart, other places, and it is about $7.00, and it comes in a dropper bottle inside a box. It has B-6 and B-12 in it, but no biotin. My hair hasn't started coming back yet, in fact I'm still losing eyelashes. I don't think the B will make it come back any sooner, but once it starts I think it will help a lot. My nails are also a mess.

    Congrats to everyone who is just finishing chemo. Such a relief to be done! Radiation is going fine, although I am pretty tired all the time. I'm getting really impatient to start feeling good. I start with an aromatase inhibitor the middle of March, not looking forward to more hot flashes and muscle and joint pain. Maybe my SE's won't be so bad?!

    Hooray for every one of us who are slowly getting back to our regular lives!!

    Barb 

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  • stjude10
    stjude10 Member Posts: 390
    edited February 2012

    Congrats on being carded Fran...I think that would make my day! I still have random hairs on my head. I don't care how short (for now), I just want it to be full. And I'm a loooong way from that!

    Thanks for the info Barb. I started Biotin a few days ago. So far, nothing darn it! I have 4 lashes on my right side and none on the left. Both sides have about 2% of my normal brows. This bites!

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  • fredntan
    fredntan Member Posts: 1,821
    edited March 2012

    DONE!!!!!!!!!!





    whats the biotin for? Do you apply it or injest it?



    Hair growth maybe quarter inch and soft and fuzzy. I have been rubbing morrocan oil twice daily. Got it from hairdressor.but probably found at Ultra stores-bring a coupon as it was prety pricy. Sallys might have it cheaper.

    -

    How long is everyone taking there chemo supplements? I'm taking l glutamine & B 6- I figure at least 2 weeks. I had to buy new bottles, so I have tons. Isn't B 6 good for hair?



    No rest for the weary have my older daughter s rod n screw removal surgery in am. She broke her lower leg really good two years ago sking. Did have sx planned for last summer, but BC changed that. Finally told my dh about sx a few weeks ago.



    Still praying for new liver for my BIL. Hes been on list since jan. Hope we get the call soon.

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  • stjude10
    stjude10 Member Posts: 390
    edited March 2012

    Congrats Fran!!! I take the Biotin because I read on another thread it was good for hair growth and to strengthen your nails. My nails are starting to peel and flake on the top layer. I thought I'd try it hoping to not lose any. Your BIL is in my thoughts. Best wishes to your family! 

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