Has anyone started a forum for Chemo in Dec 2008?

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  • havehope
    havehope Member Posts: 503
    edited May 2009

    I had Taxol 11. One more to go.  So far so good. No major SEs. My hair is growing but I might shave it off since it doesn't look like my old hair. It is too thin.

    Have a nice Memorial Week-end!

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

    That's great to hear Simvog! You're almost to the end!!!!

    I just learned that I'm going to need to have permanent tubes surgically implanted into my tear ducts. The taxotere caused them to scar shut, and that's the only remedy. Not that the surgery is supposed to be all that bad ... it's just that it's ONE MORE THING, takes more time away from work,  and it's happening just as I was starting to feel like I was finally emerging from all the stuff piled on top of me.

  • swest
    swest Member Posts: 680
    edited May 2009

    Simvog - All right!  Almost done.  When is your last?  I want to make sure I'm on the boards so I can yell for you! Laughing

    Is anyone else still plugging along with chemo?  If so I hope you have a SE free day!

    Sonia 

  • swest
    swest Member Posts: 680
    edited May 2009

    I am so sorry to hear that Texas!  How much more can be dished out on you?  Hang in there!

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

    Damn it, Texas.  You don't need one more thing.  It does seem as if it will never end.  I have never heard of all these bizarre side effects from other chemos.  The taxotere is rough!!!

    Congrats, simvog on being almost done.  It does feel good when that part is over. 

  • Bold
    Bold Member Posts: 692
    edited May 2009

    All RIGHT SIMVOG!!!!!!

    For crying out loud. I am so sorry TEX. Its not right! I know that taxetere is horrible when I would cry at the computer it would take the furniture polish off.

    Hope everyone is gearing up for a great weekend surrounded with people that you love. Good food and drink.

  • lisasayers
    lisasayers Member Posts: 850
    edited May 2009

    Texas...sorry to hear about the additional surgery!  It stinks!  You are strong though...and you will take that one more step on your road to beating this damn thing.

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

    Thanks everyone. I cried like a baby when I got back into the car, after hearing the news. I'm normally a very positive person, but after so much has been piled on it's hard to keep getting back up.

    You are all so great to have in my corner.

  • EleanorJ
    EleanorJ Member Posts: 752
    edited May 2009

    Texas, sorry about the tube :( One more thing.. hopefully it will be the last.

    Firni, hope it starts growing soon.

  • havehope
    havehope Member Posts: 503
    edited May 2009

    Texas so sorry to hear about your problems. Hang in there. All these should be over and done with soon.

    Swest My last TX will be next Friday, May 29.

    Thank you all for your support!

  • BonnieK
    BonnieK Member Posts: 655
    edited May 2009

    Hi,

    It's great to catch up on posts and see that everyone is doing reasonably well. 

    Texas -- sorry about the tear duct problem and the need for tubes.  You really didn't need that after all you've been through, but hopefully it will be a fairly easy procedure that fixes the problem.  My eyes tear a lot now too, but I haven't been to the eye doc to see what's wrong.  Could be that taxotere did a number on my tear ducts too. 

    Today will be #18 rad treatment for me with 10 to go -- should be done on June 8th.  So far the worst part is going every week day -- it's very tiring and I'm dragging by the end of the week.  Also seeing a lymphedema therapist every week and will be getting a sleeve and glove soon.  My LE is pretty mild, but it's in my hand and that is supposed to be hard to deal with.

    I tried to change my avatar to show you my new and extremely short gray, white and brown hair, but couldn't figure out how to do it.  Take care everyone. 

    Bonnie

  • swest
    swest Member Posts: 680
    edited May 2009

    I am heading out of town for the weekend (beach bound) so I will be away from the Internet.  I hope that everyone has a wonderful holiday weekend.  Do something fun with your family and friends!

    Sonia

  • colleen1960
    colleen1960 Member Posts: 226
    edited May 2009

    Texas - So sorry to hear about your tear duct problems.  It does not seem fair that so much has happened to you.  Hopefully this will be the last hurdle you have to get over.

    I just got home from the beach.  Both kids were off today.  My daughter's school was closed all week due to 8 confirm cases of the swine flu.  It was crazy around here, but hopefully she will be back in school on Tuesday.  I want to wish everyone a great Memorial Day Weekend.  And that everyone is feeling well enough to enjoy it.

    Colleen

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

    Feeling tired today from the radiation. We have theatre tickets to see Happy Days tonight so I will get a nap this afternoon.

    Funny thing is that when I was diagnosed, I figured I was in great shape so I'd get through treatment without too many problems. Back then, I wasn't even contemplating losing fingernails, not being able to eat because of dry mouth, peeling hands, tear duct surgery and all of the rest that I've been dealing with.

    For a long time, my family (in another state) didn't even believe me when I talked about all the side effects I'd been experiencing. They'd just say that they knew several BC survivors and none of them had these problems so they must all be in my head.

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

    Texas, I'm sure it was you, when we first started posting here and we talked about chemo and how we were both so healthy that instead of being hit by a mac truck we'd just have to deal with mini coopers. HA  I think you and I have had the worst SEs with yours being even worse than mine.  How long do you have rads yet and do you have you tear duct surgery scheduled yet?  I do hope you enjoy your nap so you can enjoy the show tonight.  I'm sorry that your family is so unsupportive.  Maybe they should have gone out to see you while you were having treatments and see for themselves what chemo can be like.

    Went to my friend's daughter's funeral yesterday.  It was a very nice funeral as far as funerals go.  A beautiful tribute to her daughter.  So sad and so scary.   

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

    Good memory Firni, yes that was me who said that! When I was diagnosed, I was given 10-15 books on breast cancer. None mentioned the type of side effects I've experienced. Oh well. What's done is done, right?

    I'm 1/3 of the way through rads -- 12 down and 33 total. I'll be finished toward the end of June.

    My eye surgery is a week from Thursday. It will be a LONG day:

    8 a.m. rads

    10 a.m. surgery

    4 p.m. appointment with medical oncologist, which will probably wind up in an argument about taxotere vs. arimidex. Since I now think of myself as the Queen of Side Effects, I refuse to risk some of the scary sounding AI side effects when the benefit is 2% or less.

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

    Texas, all the AIs are very expensive because there are no generics.  Some insurances pay all but a small co pay.  My insurance has all the AIs listed as a tier III med and they only pay 30%.  So my monthly cost would be about $200.00 per month.  When I told my onc that he put me on Tamoxifen instead of Femara.  SO maybe your insurance won't pay enough for you to afford taking the AIs.  Sure beats arguing about SEs.    I've only been on the Tamoxifen for 2 weeks but so far, no SEs.  If you do go on Tamox, have your Onc do a liver metabolizer test to make sure it will do you any good.  Or you could look into DIM.  Some of the women on the alternative threads swear by it.  

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

    Yeah, I've been reading about DIM. Looks interesting but I wish there were some human clinical studies to back it up.

    I see where you're headed with the insurance "argument" Firni but it would be just my luck to have the doctor double check on my behalf. No, I'll use my most honest argument: I just don't feel comfortable putting an AI into my body. And I will ask for the liver metabolizer test, although I understand some oncologists don't believe in it.

  • EleanorJ
    EleanorJ Member Posts: 752
    edited May 2009

    You know my MIL watched the Farraw Faccett movie the other day and while watching it she began to understand what it was like. She said I always looked so good that she never thought I might have had that many SEs. Reality is that she never saw me at my worse when I would go 2 days in jammies without shower & make-up and could barely stay awake. Of course, I didn't get it as bad as some of you, I think I got out easy on the SEs, but when she would see me, I would be dressed nice and looked nice.

    Anyhow, my BIL (who's only 20) went to the dr yesterday morning complaing about lump on the back of his throat. Well, she is sending him to a throat specialist, she thinks it can be stage 1 (how can she stage!) throat/mouth cancer :( He's still young and a party boy, smokes & chews tobacco! And NO health insurance. All we can do now is wait & see, I keep telling her that he CAN'T be dx with cancer the day I'm done with tx!!

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

     I think the Farrah Fawcett movie was a real eye opener for a lot of people who have never had to witness cancer treatment first hand.  I think it even made DH realize some things even tho he was here with me thru every step of the treatments.  I'm the type of person who NEVER gets sick.  Not even colds.  So to have me down for 6 months has been something he hasn't been able to accept on an emotional level.  That made him kind of ignore some things.

    Caroline, I'm so sorry to hear about your BIL.  I'm praying that this is just some benign thing and will be a warning for him.  20 years old is just too young no matter how much he parties, smokes and chews.  And you're right.  How could she possibly stage a lump?  I hope his news will be good. 

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

    Caroline, that's really scary for your BIL. Hopefully it's not only good news but also a wake up call for him to tone it down with the chew/cigarettes.

    Firni, it is very stressful for our loved ones to see us sick for this long. I didn't watch the special because I wasn't in the right place emotionally and was afraid I'd get too depressed. Maybe by the time they repeat it, I'll be ready. I'm beginning to see my old optimistic personality emerge more each day.

  • lisasayers
    lisasayers Member Posts: 850
    edited May 2009

    Texas, the DIM I use is the only DIM that has been and is still being used in clinical trials.  Here is the link

    http://www.bioresponse.com/Clinical-Studies.asp

    Caroline...keep us posted on your BIL

  • Lainey64
    Lainey64 Member Posts: 740
    edited May 2009

    Caroline, I can't believe a doctor would tell your BIL something like that without any tests.  He must be terrified.  I remember a few years ago I was getting my teeth cleaned and the dentist stopped midway and said he noticed a blue speck on my gums and suggested I get it checked because it might be cancer.  I freaked out!  So I went to a specialist and it turned out to be a vein!  I will hope and pray that it turns out to be nothing for your BIL.

  • EleanorJ
    EleanorJ Member Posts: 752
    edited May 2009

    Thanks, will do. We're just trying to find him a doctor right now to get a dx. He does have a hairy lump in his throat. yuck!

    What is DIM for?

  • swest
    swest Member Posts: 680
    edited May 2009

    Good afternoon all!  It really feels like a Monday!!!!

    I had a great weekend.  Very relaxing.  Got to eat crawfish and drink a few brews.  Good time! Laughing

    I'm sorry to hear about your BIL Caroline!  I too am interested to hear about DIM.  I'm sure it won't help me since I'm trip. neg.

  • lisasayers
    lisasayers Member Posts: 850
    edited May 2009

    There is a lot of information on DIM on the "natural girls" thread.  Basically, it does the same thing that tamoxifen does...  Here are some links you can read about it

    http://diindolylmethane.blogspot.com/2007/06/dim-clinical-applications-and-research.html

    http://www.vrp.com/articles.aspx?ProdID=art477&zTYPE=2

    http://www.diindolylmethane.org/molecular_biology.htm

    http://www.bioresponse.com/Home.asp

  • swest
    swest Member Posts: 680
    edited May 2009

    Thanks Lisa!  I'll check these out.

    Sonia

  • swest
    swest Member Posts: 680
    edited May 2009

    Just curious, has anyone tried to color their hair yet?  I have a lot more gray/white than I had before chemo.....

  • EleanorJ
    EleanorJ Member Posts: 752
    edited May 2009

    Thanks Lisa, I read those, but still not sure I get it. Getting late... since it does the same thing as Tamox, then it wouldn't work for triple neg, right? Any SEs? I wouldn't think, but it might be worth trying since I'm still unsure of my true ER status, might be tiny +.

    swest, how long are you hair now? I'm debating about it, mine are very much gray right now, but I know the grey will go away when it starts growing more and I get my first cut. I'm scared the roots would start showing way to soon since I have so little hair on my head, plus I'm unsure as to what color my hair will be, I wouldn't want to keep dying my hair after it grows back, and scared I'll end up regretting it, so I think I'll tough it out! But if you do dye your hair, make sure you use a natural one with no harsh chemicals.

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

    Mine is coming in much grayer too -- I had no idea that part of that was because of the chemo. I am thinking of letting it grow out just to see how it looks. I can always dye it later if I hate it.

    Mine's too short to color right now anyway.

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