Has anyone started a forum for Chemo in Dec 2008?

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  • swest
    swest Member Posts: 680
    edited March 2009
    Thanks for the tip Elaine!  I'll try anything! Wink
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  • Texas357
    Texas357 Member Posts: 1,552
    edited March 2009

    I've never heard of using castor oil but count me in! I'm SO READY to start crossing off the side effects that are going away instead of appearing.

    I wonder how long it takes to get rid of the dry mouth/taste issues? I've gone 2 weeks between treatments with no relief. I'll never take my taste buds for granteda again.

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  • Lainey64
    Lainey64 Member Posts: 740
    edited March 2009

    Texas375, I feel as though I've been lucky the past 16 wks with regards to dry mouth and my taste buds but all of a sudden with the last TX I'm having some serious issues!  My mouth tastes like something crawled inside it and died! LOL  It's yuck yuck.  I brush my teeth and rinse and 5 min later the awful taste is there again. It's really crazy how I can eat something and "know" what it's supposed to taste like but there is no taste.  I sure hope I manage to drop a pound or two because of this! 

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  • swest
    swest Member Posts: 680
    edited March 2009

    Texas and Elaine - That happened to me during my treatments of TC.  I think that is why I gained weight.  I was looking for that taste satification and could not get it.  So I kept on eating and searching.   LOL.  My taste buds came back ~3-4 weeks after chemo ended.  Hang in there!!!!!

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  • Texas357
    Texas357 Member Posts: 1,552
    edited March 2009

    3-4 weeks? Guess I can manage that!

    Okay -- guess I'm going to HAVE to manage that. That's the only option, isn't it?

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  • bobcat
    bobcat Member Posts: 681
    edited March 2009

    Hi Texas - I too had the dry mouth and 5 weeks out of chemo I'm still waking up all night with dry mouth but at least it's gone during the day.  I keep a jug of water next to my bed and by morning it's empty - sometimes I don't even remember drinking all that water!!

     I'm going to try that castor oil trick too - I hate not having brows more than I hate not having hair!!

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  • ellenoire
    ellenoire Member Posts: 674
    edited March 2009

    Ladies... just tripped over one of your posts about hair growth. Take Borage Oil capsules and Brewers Yeast capsules.. both cheap at the Health food store.

    I took them as soon as chemo finished in July and have double the length of all the ladies in my group. 

     hang in there... it all gets better! 

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  • swest
    swest Member Posts: 680
    edited March 2009

    Thank you ellenoire.  I will give this a try.  Stop by any time!

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  • Lainey64
    Lainey64 Member Posts: 740
    edited March 2009

    Thanks Ellenoire.  I'll try it too!  I'm up for anything that will give me faster growth.  I noticed last night that I have a lots of fuzzies on my head now but they are white. 

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  • mmliv
    mmliv Member Posts: 128
    edited March 2009

    Elaine - me too - my fuzzies are all white. I keep hoping that dark hair is coming in..... but since I was going grey; just maybe I am now going to be white haired? That will surprise the family - but who cares..... I am just ready to get rid of hats and the wig now that the weather is getting warmer. 65 degrees today!

    Mary L 

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  • swest
    swest Member Posts: 680
    edited March 2009

    I'm all white too!  As soon as I get enough fuzz I'm coloring this mop! Surprised  Really though, I'm not exactly sure how white I was before chemo since I colored every 6 weeks.  I'd like to believe all of this white is from chemo.....?

    I have to tell you all about my exciting evening....For about 24 hours I had been having a burning pain down the back of my left arm (cancer side) which went all the way to my elbow.  It had slowly began to bother me to the point I was constantly rubbing it for relief.  By 8:30 last night I thought I ought to have this checked out.  Of course my chemo brain was running through all of the SE's from chemo and it freaked me out thinking of blood clots and etc.  When I got there I thought good only 2 people in front of me to see the Dr.  As I waited more and more people started coming in.  Eventually there were sick children everywhere.  The triage nurse saw me and she decided that while I wait in the holding tank I ought to be in a surgical mask so I did.  (My friend who went with me also asked for a mask. LOL).  By 12 midnight they had me in a room.  The doctor made his appearance at about 1 AM asking questions and etc.  I had a EKG, Chest X-rays and blood work.  Everything was normal but I did not find this out until 3 AM.  I finally fell into bed about 4 AM.  By 8 AM I was up getting ready for work.  Boy am I tired!  Oh, I forgot to mention the $200 co-pay for emergency care to tell me I'm normal.  Oh well, I would have had a panic attack it I hadn't gone.  I think the burning pain may be from my mastectomy and the nerves regenerating??????  Did anyone else have this kind of arm pain after mastectomy?

    Going home tonight and getting into bed early.  No need to take any sleeping aides tonight!

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  • EleanorJ
    EleanorJ Member Posts: 752
    edited March 2009

    swest - what a night!

    Divas, darker hair will come in after the white fuzz. After my hair fell, white fuzz started coming in not long after then the dark hair came in. I shaved mine right away as it looked awful. By the time I'm done chemo, I should be able to let it grow since it's getting fuller & fuller with each tx.

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  • Texas357
    Texas357 Member Posts: 1,552
    edited March 2009

    My first fuzz was white. It's now about a 1/4" long with lots of bald spots and it's coming in darker. My natural hair is (I think) salt and pepper. As with so many of you, I've colored it for so long that I'm not quite sure how much gray I actually have.

    The funniest question came from my mom, who lives in another state. I mentioned I've now got about a 1/4 of hair and she asked if it was coming in straight or curly. Huh? Like I can tell when I practically need a magnifying glass to see it!

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  • Firni
    Firni Member Posts: 1,519
    edited March 2009

    I've heard too, that hair comes back in white because the chemo has killed it.  Then the healthy stuff comes later.  A lot of women do color the white stuff.  Most of the time hair will also come in curly but not always.  My aunt who is 74 just finished chemo for colon cancer about 3 months ago.  Her hair which was light brown with lots of gray is now coming in jet black.  She feels she looks a bit harsh.

    Caroline, I can't believe you've been growing hair the whole time you've been having chemo.  I haven't had a single hair grow anywhere since it all fell out.  I'm almost afraid it won't come back.  It seems like pretty much every one at least has had to shave their legs once in a while.  And now so many of you are already growing white fuzz and you aren't done with chemo yet.

    Swest, what a ridiculous night you had.  I've had stabbing pains in my chest but not burning pain anywhere. 

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  • lisasayers
    lisasayers Member Posts: 850
    edited March 2009

    Swest, sorry to hear about the fiasco at the ER!!!!! 

    My hair is coming in my natural color...but it may have been white before...I've been shaving mine since it started falling out.  I'm a month and a half out from my last treatment and it is about 1/8 of an inch.  So maybe I had shaved the white stuff off and didn't know it! LOL    Mine continued to grow all through chemo...just not everywhere. 

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  • EleanorJ
    EleanorJ Member Posts: 752
    edited March 2009

    Firni - don't worry, it WILL grow back! Before chemo, my hair typically grows fast, I'm not sure if that has anything to do with it? I smooth shaved my head yesterday and it was no longer smooth when I woke up this morning! Now, haven't had to shave my legs much, my arm pits were completely bald up to a few weeks ago, still don't have to shave much. Believe it or not, I actually wish I was bald bald until chemo is over.

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  • Lainey64
    Lainey64 Member Posts: 740
    edited March 2009

    Good morning Divas.  Funny that the first post I read this morning is about hair.  I'm so tired of the hair thing.  I want it back so bad.  I had several dreams about it last night, that it was back and growing, etc.  I think, well actuall "I know" it's because I read so much about it yesterday and even stopped at the vitamin store on my way home from work to purchase some barage oil capsules.  I got ready for work this morning and felt pretty perky.  But right when I get into work I am bombarded by well meaning coworkers about my "look".  They complimented me but then immediately jumped into "hair" conversation and one older lady who isn't always the most tactful, had to make the comment that my hair "used to be thick".  Finally I couldn't take it anymore and told them "c'mon guys, please leave me alone!".  They both left but now I'm at my desk feeling so emotional and just TIRED of this.  I'm sick of having to be so "strong" for everyone at work.  So here I sit on the verge of tears and just feeling beaten down by this whole thing.

    I'm so sorry to unload on you all today, but this is the only place where I know people really understand.  Somehow typing this has made me feel better.  Thank you all for being here.  I love you all.

    Elaine

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  • horsercn
    horsercn Member Posts: 32
    edited March 2009

    Elaine.... I know how you feel....stay strong.....we are all praying for each other. 

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  • swest
    swest Member Posts: 680
    edited March 2009

    Elaine - I am so sorry!  I hate when you feel like you have to fake everything for others!  Please know that I am sending you comfort vibes today.  Go outside at lunch and take a walk.  I know it is very pretty here in Houston so maybe the walk will lift your spirits.  (((((((Hugs)))))))

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  • lisasayers
    lisasayers Member Posts: 850
    edited March 2009

    Just got back from meeting with my PS about my exchange surgery on Friday...everything is a go!  Signed all the papers for the 410 trial I will be a part of.  They are supposed to be approved by the FDA any day now...but you know how that goes!

    I'm looking forward to getting rid of these turtle shells! 

    Make it a great day!

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  • swest
    swest Member Posts: 680
    edited March 2009

    Wonderful Lisa!  I wish you an uneventful surgery and speedy recovery!!!!!  Let me know how you like the 410's.  That is what I am wanting.  I'm hoping they will be approved soon as I don't know if my PS is in the trials.  I'll find out tomorrow at my apt. 

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  • BonnieK
    BonnieK Member Posts: 655
    edited March 2009

    Elaine,

    Speaking of co-workers, one of mine told me she wouldn't have the nerve to shave her head but she likes my wig so much that she might buy one just for fun.  I just smiled and neglected to tell her that wigs are itchy and uncomfortable and that being bald due to chemo is very different from choosing to shave your head.  I, too, am getting very tired of well-meaning comments made by people who have no idea what it is like to live with what we are living with every day.

    You are so right that this is the one place where people really do understand and it feels safe to unload.  Take care.

    Bonnie

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  • swest
    swest Member Posts: 680
    edited March 2009

    Bonnie - What was your co-worker thinking????? 

    I forgot to mention yesterday that when I as at the ER the triage nurse asked me if I ONLY had cancer in my breasts...She quickly corrected herself by saying "like having it in the breast is not  bad enough".  She made an effort to catch herself which made it easier on me.

    Having gone through this process has made me more conscious of what I say to others. 

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  • Texas357
    Texas357 Member Posts: 1,552
    edited March 2009

    I think we all have gotten the comments about how strong we are, how good we look, etc. I want to look over my shoulder to see who they are REALLY talking to because inside I'm screaming: Make this all be over!!! 

    I need to remind myself that a year ago, I wouldn't have known what to say to someone going through this. It probably wouldn't be all that different than what we all hear from well-meaning people in our lives.

    My news: My eyes have been non-stop watering for weeks thanks to the Taxotere. It looks like I'm crying pretty hard all the time. I went to an opthalmologist today who said the skin had grown over all 4 of my tear ducts. He opened them with a probe and gave me steroid drops to help prevent it from happening again. Thank goodness I've only got 3 more treatments.

    But I yelled at his dumb male assistant who didn't read my chart before bringing me in the exam room. He insisted that I take an eye exam or he wouldn't let me see the doctor. I told him, "I'm on chemo which is affecting my vision AND I can hardly see because of the tears flooding my eyes. What the heck do you expect to get from having me read an eye chart?"  In the end, I just rattled off some letters and told him point blank that I didn't care what letters I was saying.

    At one point, I said: "It could be an O, or a D, or maybe a C. Ooooh, I know, let's make that one a U." Dumb male.

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  • swest
    swest Member Posts: 680
    edited March 2009

    Texas - Please don't take this the wrong way but you have me cracking up and LOL while at work.  I just wish I had the self confidence to do something like that!!!!  You go GIRL!

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  • colleen1960
    colleen1960 Member Posts: 226
    edited March 2009

    Lisa:  I am also on the trial for the 410.  I want to wish you all the best for your surgery on Friday.  I will be going in 1 wk from tomorrow.  Please let me know how everything goes as I am getting very nervous.  I feel like I am more crazy about this surgery then I was before the mast.  I don't know why!!!  Maybe, because I am just starting to feel better besides the fatigue.  I still get tired really easy, but otherwise I am feeling well.  I am also get a reduction on the other side so they both will match.  What did your Dr. say of recovery.  Mine said 6 to 8 wks.  What time is your surgery on Friday.  I have to wait for the day before and they will call me and let me know.  I told the Dr. I wanted the earliest AM appt. possible.  I told him I wanted him bright eyed  and also I like to eat lol....

    Hope everyone is doing well this week.  Spring is almost here YEA!!!!!!!!!!

    Colleen

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  • lisasayers
    lisasayers Member Posts: 850
    edited March 2009

    Hi Colleen

    They will call me with my time tomorrow, but as of now, I'm first on the schedule!  I also told them I better be first as I will be hungry!  But I'm bringing my own food, as hospital food is fake food! LOL 

    My doc said "no pushing, pulling, or lifting anything heavier than five pounds for three weeks"  He also told me no teaching Zumba for three weeks.  He knows me.  I went back to teaching zumba three weeks after my bilateral! LOL 

    I found out why he puts the drains in....as I know a lot of women have not had drains with implants.  He puts them in for suction...to keep the implant from flipping upside down...which could be a real problem with the 410, seeing as it is tear drop shaped!  That could be an interesting look! LOL  The drains will only be in for a few days! 

    I'm excited/nervous too!

    I'll let you know how it goes!

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  • swest
    swest Member Posts: 680
    edited March 2009

    Good to know Lisa.  Thanks for sharing!  As much as I hated the drains with my bx I'll deal with it.  Means to an end!!!!

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  • Majanumba1
    Majanumba1 Member Posts: 99
    edited March 2009

    Lisa, good luck with the exchange!



    Texas, My eyes are watering all the time to the point where i can hardly read. How did he unblock you tear ducts. Di your onc mention that this might be the cause. my onc checked my blood sugar when I said my eyes were bothering me.Um. I am calling right now, as this is really un comfortable.



    All the best to everyone.



    Has anyone heard from Bold?



    Maja/Carolyn

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  • Lainey64
    Lainey64 Member Posts: 740
    edited March 2009

    Thank you ladies for understanding how I felt!  I actually left the office early yesterday for my rads planning session and I was finished with that around 1:30 so I just took the rest of the day off.  I went home and got my dog and we headed to the park.  It was a beautiful day!  That really chilled me and was just what I needed. 

    Yes, I've also received the comment from my coworker about how she wished she could wear a wig.  I told her "well shave your head and you can!" hehe  Actually someone posted a message on my caringbridge blog yesterday about my hair.  She is a dear woman but it irritated me that she compared my hair loss to her husbands lack of hair.  I had to cool myself down a bit after I read that.  But she did give me an important message and it was to be grateful to be alive.  I definitely am!  But like everyone else, I'm ready to get things back to "normal!". 

    Texas, I sure hope your eyes are going to be better and that what the doctor did will help. 

    I hope everyone is having a good day! 

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