Has anyone started a forum for Chemo in Dec 2008?

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  • swest
    swest Member Posts: 680
    edited June 2009

    Bobbi - Have fun in NYC!  I have always wanted to go there!  Did you get to see a show? 

    Firni & Bold - I hope you both find some relief from the swelling.  I don't know how ya'll are doing it now that it is starting to warm up!

    OK Texas, I think I can say you have had enough with SE's and Doctors!  You will have to tell me who your doctor are so I'll stay away! Hee Hee!  You have earned the right to VENT!Yell

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

    I'll be under general anesthesia for the 20 minute procedure, which I guess is why I need the chest x-ray. But why on earth did the doctor's office wait 2 weeks to tell me that? Even worse: they wanted me to go out and find another doctor who would order it! I held my ground and told them the doctor who was performing the surgery could damn well order the necessary pre-op tests!

    It worked. They gave in and had him write the orders. How ridiculous!

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

    Texas, having another doc order the pre-op tests doesn't even make sense.  Good for you for holding your ground.  Waiting two weeks to tell you what you need done pre-op doesn't make sense either.  I sure hope this guy's surgical skills are better than the way his office is run. 

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

    How insane can an insurance company be?  They are not paying the surgery clinic or my PS for my exchange surgery.  They did pay the anesthesiologist tho.  I get so tired of fighting with them.  I suppose it will be the same crap when I get nipples done.  Thank goodness I don't think I'll need any revisions done.  

  • Grancy11
    Grancy11 Member Posts: 31
    edited June 2009

    Firni - what excuse did they give, if any?  that does sound insane, so terrible you're having to deal with this as well as everything else...

    Texas - wow, more insanity, guess I expect it more from ins companies than dr's offices tho

    Caroline - don't mean to offend, but yes, it does seem funny about your hair after all you've been thru, but maybe it's just a reaction to something you can change...I did need the laugh, thanks!  have you talked to the salon yet and if so what did they say?  like you said, the hair is so short it doesn't matter that much if you "hurt" it  :)     hope you get something you like

    Lisa - you look so good!  enjoy the short summer, wish we here in the South could split some of ours with you!

    blessings and prayers for all...

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

    Grancy, I haven't talked to the insurance co. yet.  I just got the EOB saying that my share was all of it.  I know my PS billing company will eventually get around to appealing it, but I will have to call and spur things along.  I know the insurance co. will pay, they have to.  So why don't they just do it in the first place?  What I really don't understand is why they paid the anesthesiologist for a surgery they don't want to approve.  I'm still fighting them to pay for the oncotype test as well.  Oh well, one day I'll just be able to put that gigantic cancer co-pay folder in storage and not have to deal with it any more.

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

    I did not see my onc about my swollen foot.   Onc is gone now for a week for something personal.  His PA called me and said to elevate, ice, keep blood circulating and wear compression hose until I see Onc on 6-25.  I'm not thrilled with that answer but maybe I'm looking for answers that aren't there.  Bold, I did not injure my foot at all so I don't think there is a soft tissue damage.

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

    Firni, you just don't need the stress right now. Could it be that what the insurance didn't pay is the remainder of your out of pocket for the year? That's what happened to me when I had my port removed. The surgical center made me pay the entire remainder of my out of pocket for 2009 which was almost $2K.

    My TE is sore from the radiation causing the entire area to tighten up. That side had softened and was looking very natural but now it's high and very firm -- back to looking like a turtle shell. :)

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

    Texas, the surgical center bill is $21,000.00.  Definitely not my co-pay or deductible.  The PS fee was $1900.00.  I've met my deductible for the year with just one chemo in Jan.  My highest co-pay doesn't come close to that.  So, ya, they're just being difficult.  I'm sure you're keeping that radiated TE breast conditioned.  Hopefully that skin will soften up again.  Are you done with rads?  So hard to keep track of everyone's tx schedules.

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

    I'll be done with rads on June 23rd -- ironically exactly 8 months from the day I was diagnosed (September 23rd).

  • lisasayers
    lisasayers Member Posts: 850
    edited June 2009

    Firni that is just insane!!!!!!!!!!!  Keep fighting!

     I just got back from my first follow-up since ending chemo!  They did the tumor marker test...they look for a score over 38 and I was a 21!!!!!!!!!

     Done for another three months!

    Make it a great day!

  • Texas357
    Texas357 Member Posts: 1,552
    edited June 2009
  • swest
    swest Member Posts: 680
    edited June 2009

    I am so sorry you guys are having such problems with your insurance companies.  That turely sucks!  I think if it were happening to me it would send me over the edge.  My insurance  company has been so good to me.

    Fantastic Lisa! 

  • Lainey64
    Lainey64 Member Posts: 740
    edited June 2009

    Lisa - congratulations on your 3 mth test!

    Do all onc's do the tumor marker test?  Does anyone know?  I'm wondering because I had my 3 mth followup with my onc last week and he didn't mention it.  He told me my blood counts were good and that was it.  He said "cya in 3 mths".

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

    Elaine, my onc doesn't do any blood work, tumor marker tests, exams or scans.  He said my appts. would be like social calls I pay for.  I have my first appt. after chemo on 6/25.  Quite frankly, if he isn't going to do anything, I don't see any reason to go see him every three months.  I'll have to see what really does happen during these appts.  I have a bunch of questions for him this time too.

    Lisa, I'm glad your marker test went well.  I think it would be reassuring to have numbers. 

  • Bold
    Bold Member Posts: 692
    edited June 2009

    Ferni: I find your Dr. to be glib. I would think that certain test are important. For instance your FSH levels as you are ER+. Your cbc and chemistry. As well as your vitamin and mineral levels especially vit. D. I would like to know if these levels are returning to normal and if you have an deficiencies that may need supplementation. I know that not all Dr. do tumor markers. Still your overall health need some support and monitoring. Sorry I just want the very best for you. I think your wonderful!

    Congrats Lisa!!!!!!

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

    Bold, I agree.  He told me he feels all those cancer tests give too many false positives or don't pick up a cancer.  We had a local meteorologist who had BC.  She had all the tests and scans done and her recurrence was missed and she died anyway.  He loves to tell that story.  As far as cbc's, vitamin and mineral levels, I guess that's general medicine and that isn't what he does.  Like I said, if nothing really happens at this first appt, I won't go back to him every three months.  I've never been in the habit of paying for social calls.   I'll see my PCP, who by the way is running a bunch of blood work including D, B12 and folate.  I didn't have to ask him.  He asked me if my onc had ordered those.  He's been my doc for 15 years and it just broke his heart to have to tell me I had cancer.  He's a wonderful doctor.  I'll see my gyn regularly too to make sure every thing in that department is ok and have her order an MRI every year to make sure there is no cancer on my chest wall or in my nodes.  Then if either of those drs. find a problem, I'll see an onc.  Maybe not the one I've had.  I've had other issues with onc too, but really not bad enough to change in the middle of tx.   Hopefully, I'll get a job soon and my insurance may change and he might not even be in that network.  

  • BonnieK
    BonnieK Member Posts: 655
    edited June 2009

    Hi ladies,

    My last radiation treatment is next Monday and then I see the med onc for a 3 month check up on Thursday, the 11th.  Has anyone else started to feel anxious and nervous as they get close to the end of treatment?  It feels sort of like those nights before the start of a new school year and it gets worse every day. 

    Thanks for being here -- we've been through a lot together!

    -bonnie 

  • havehope
    havehope Member Posts: 503
    edited June 2009

    Lisa, please be aware the tumor markers are not always reliable and it is not so much the value ( that counts,too ) but the variation of the value. It should stay at the same level and not fluctuate even if they are "normal" levels. Here are mine :

    In March 08 when I found the lump CEA was 1.2 and CA 27.29 was 5.53.Back then my doctor told me not to worry is a cyst. It was bc.

    In Sept CEA was 1.59 and CA was 27.29 was 14.03 - before surgery.

    After surgery, before chemo Nov 08 CEA was 1.3 CA 27.29 was 11.47 .

    March 20, 09 mid chemo (just started 12 Taxol) CEA was 0.7 and CA 27.29 was 10.

    May 15, CEA 0.9 and CA 27.29 was 10.

    I will have the next one done in July.

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

    Bonnie, I can relate to your feelings. As much as I want to believe all of the positive news that I've read and heard, I still have a feeling I can't shake that I'll get a recurrence. And as long as I'm getting zapped, it's almost like I'm getting a "free ride" for a while.

    What's weird is I'm normally an extreme optimist, and I've always been very healthy. I wish I could just flip a switch and change my mindset about this.

  • BonnieK
    BonnieK Member Posts: 655
    edited June 2009

    Texas -- I am truly happy to be getting to the end of treatment and I don't spend much time worrying about a possible recurrence.  Recurrence is always a possibility, but so are many other things so why let this one get the best of us!  My problem is that I'm a "stuffer" and now all the emotions that have been hidden (even from me!) since last September are trying to get out and I'm fighting to keep them down.  Hopefully I can find a positive way to decompress.  --bonnie

  • Bold
    Bold Member Posts: 692
    edited June 2009

    Texas: You can flip a switch. Replace the thought every time it shows up. You can not do this to my friend Texas. The just because your mind introduces a thought does not mean that it is true. Please don't believe that you will have a recurrence it is only the tyranny of the mind. You have taking your treatments and continue with hormone therapy. You are in a curable class of cancer. I can not change your mind but what if you believed you were cured? If some God awful recurrence happens deal with it then not now, it will rob you of the happiness that you deserve. Maybe this sounds like blah blah blah.... but these disciplines are part of treatment, I know that they are not easy as I do them myself but they can be done. I think you are great. We are traveling the same road through the scariest part of our lives. We have great hope for a complete cure, live it, breath it, believe it!  Redirect bad thoughts!!!! I know that they are real worries, I just know that thoughts are things and can manifest. Sorry to preach I say it not only for you but myself too.

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

    I do not have any appointments next week!  No doctors, no therapy, nothing.  I haven't had a week like that since the last week in March.  

  • swest
    swest Member Posts: 680
    edited June 2009

    Bonnie - I love your avitar (spelling?)!  Quit stuffing!!  Let it all out!  It will really make you feel better.  I'm a stuffer too!  I totally understand where you are coming from!

    Firni - Isn't it great!  I had a few weeks like that in April.  It was wonderful.  Enjoy!

    I guess everyone ought to be wrapping up the Rads.  I hope everyone breezed through them!

    I am doing well.  Right now I should be cleaning my house since my parents and my eldest niece (18 yrs. old) are coming in tomorrow from Arizona.  I hate cleaning.  I wish I could afford a maid!

    I may not be on the boads much in the next week but I will be thinking and praying for you wonderful ladies!

  • lisasayers
    lisasayers Member Posts: 850
    edited June 2009

    Yes simvog I'm aware of that.  I know they are not very accurate or reliable.  But the main thing is I believe I'm cancer free and that is the most important thing! :)

  • Bold
    Bold Member Posts: 692
    edited June 2009

    Damn you look great lisa!! love the leopard meowwwww!

    BKokie: You hair is my goal. I just have some crazy grays going every witch way. But Monday I start my 8th week out so I have heard thats when stuff starts to happen WHOHOOO!!!

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

    My reg. doctor told me that most women feel a sense of loss and fear when their treatments end.  It takes awhile to get used to being "normal" and healthy after such intense long term treatment for such a scary disease.  Most of us spent a good 6 months down with BC and that's long enough to become totally immersed in our BC and our fight.  "Recurrence" still is running around in my head but not as much as it was even a month ago. I feel better every day and can do most of the things I used to do and I really believe that I'll be able to move beyond this and not worry about it... too much.  I imagine it will cross my mind from time to time.

    Bold, I like what you said about a complete cure, "live it, breath it, believe it".  

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

    Sonia, you don't have to clean your house for family.  They're coming to see you.  Not your dust bunnies. 

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

    Thanks for the push back up Bold. You're right of course: I can't focus on the negative possibilities. I think as I start to feel like my old self again, that hopefully I'll be able to push the bad thoughts out of my head.

    I met with my medical oncologist yesterday. He'd been pushing AIs so hard that I was ready for a fight. But it turns out he's more than willing to work with me on the next step. I'm getting a bone density test before we decide whether I should start with Tamoxifen or an aromatase inhibitor.

    Hair update: I have a few very faint eyebrow hairs! Hooray! My head hair still looks like fuzz but I'm already looking around for the best stylist I can find. I want my first hair cut to be REALLY good.

  • lisasayers
    lisasayers Member Posts: 850
    edited June 2009

    LOL, thanks Bold!  I've always been an "animal print" girl! 

    I agree with Firni on the house cleaning.  I used to have a sign that was at the door that said, "If you are here to see me, come on in.  If you are here to see if the house is clean, you may as well go home!"  hahahahahahaha 

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