The Beast & Me: Round Two

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  • Naniam
    Naniam Member Posts: 1,766
    edited April 2007

    Gina, sooo very glad that you have found someone you like - has a way/plan to give you treatments that will lessen the side effects but be just as effective. A sunshine day in some recent gray ones.

  • csp
    csp Member Posts: 2,765
    edited April 2007
    "No ovary removal until AFTER chemo."

    When you talked about the former onc. wanting to do the oomph before chemo I felt concern. I had read so many of the ladies doing it after treatment. I was worried that the surgery was going to put you off treatment longer and I know there is a time frame for when treatment should start,
    Among other things she had said to you, and there is a list
    LOL ! I never doubted for a moment that you would not regroup after the consult with her .

    NOW GO KICK SOME CANCER BUTT!

    P.S.
    Warning to MariaC...
    I am not known for my spelling abilities if I do not know
    how to spell something correctly I am not beyond making it up as I go !! LOL !

    Carrie
  • jdash
    jdash Member Posts: 754
    edited April 2007
    gina
    thats fantastic sounds like a great plan! my friend is not happy with her doc and shopping around- who are you using?
    xoxoxo
    j
  • Raye99
    Raye99 Member Posts: 1,350
    edited April 2007
    G, so glad you found THE ONE! You are such a fighter and so so very inspirational!!!!

    Thinking of you,
    Raye
  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2007
    Gina: Wow! What a great forum. Thanks to Melissa and Tami.

    So your knew onc sounds like my kind of doctor. I sure do like how he explained things to you. Its a plan and you sure sound ready to go with it.

    Nicki
  • Erica3681
    Erica3681 Member Posts: 1,916
    edited April 2007
    Gina,

    This sounds so reassuring. Congrats on persisting till you found the right doc. Now you can start your treatment with confidence. Hope you relax and have a great weekend. I know you have a hard chemo road ahead but at least now you have faith in your onc, which should make it a little easier to bear.
  • nosurrender
    nosurrender Member Posts: 2,019
    edited April 2007
    Thanks Sue, I think this is a much better plan too!

    Jasmine, I really feel good about this. THANK YOU for all the support and advice and help you have given me!!

    Thanks Naniam. This is a good plan I *HOPE*! I hope you are right about fewer S/Es!

    Carrie, ovary removal after chemo makes so much sense to me too! THANKS for everything! You and Maria crack me up!

    Julia, I am really happy with him. Is your friend from around here? I will PM you!

    Raye, THANK YOU!! I feel so relieved. BTW- WHAT a pretty picture of you!!!

    Nicki, I knew you would like him the minute I met him!!! And isn'tt his new forum the best?!

    Erica, thanks so much for all your positive input. I do feel better. Not looking forward to it- but one drug at a time is something I can wrap my head around!

    THANK YOU EVERYONE!

    Love,g
  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2007
    Gina, I just stumbled onto this new forum and I think it's great. You are much more relaxed now since finding your new onc, it's so easy to tell in your writing. That's a very good thing. So glad your new onc has the right attitude to help you, he sounds wonderful.

    pals
    cheri
  • pconn03
    pconn03 Member Posts: 643
    edited April 2007
    Gina:
    I too just found this new forum and I am so very happy that you found this new onc!!!! You really do sound so much more at ease with everything. Confidence in one's doctor is such a huge thing!!!
    God bless always,
    Pat
  • nosurrender
    nosurrender Member Posts: 2,019
    edited April 2007
    Thank you, Thank you!!

    This has been a long road. I see new girls here are being diagnosed with a second dx. I HATE HOW THE BEAST THINKS IT CAN GET AWAY WITH THIS!!!!

    We will win.
    We beat it once- and we are damn well gonna beat it AGAIN!!!

    love,g
  • Biker54
    Biker54 Member Posts: 1,310
    edited April 2007

    Now that's the Gina we all know and love!!!! The new onc sounds like a winner! You WILL beat this!

  • nosurrender
    nosurrender Member Posts: 2,019
    edited April 2007

    He really is on top of everything. Every time I look up a study there is his name... that is really cool.

  • jdash
    jdash Member Posts: 754
    edited April 2007
    gina
    thats great to read yes my friend is from around here
    actually 2 friends who arent happy with their docs

    j
  • tos
    tos Member Posts: 376
    edited April 2007
    Gina, good for you finding another Onc. Your confidence in this new one comes across in your emails, so different from the one you wrote about the first time. I was very uncomfortable w/the way she spoke with you, thought she was out of line.
    This will make a world of difference for you, kudos!
  • nosurrender
    nosurrender Member Posts: 2,019
    edited April 2007
    I am so glad I listened to all of you and got another opinion!!
    THANK YOU!
  • nosurrender
    nosurrender Member Posts: 2,019
    edited April 2007
    What is the deal with ports?
    First, I never knew they hurt THIS much. I can't even move my arm. And you girls know I am pretty tough when it comes to pain.

    THEN the surgeon informs me that I won't be able to do ANYTHING while it is in.

    No gardening, working out, swimming, sailing, sweeping, mowing the lawn, vacuming... NO ONE TOLD ME THIS.

    Am I supposed to hire a staff to take care of my yard and house? Is the Beast going to pay for it???

    This has really hit me hard. I want to keep living and active during the next six months of chemo... not be in total hell.
  • Erica3681
    Erica3681 Member Posts: 1,916
    edited April 2007
    That sounds strange to me. I have a friend who has stage 4 ovarian cancer who has had the same port in for (I kid you not) over six years. She's an avid gardener (she calls her garden her "fuck cancer" garden) and her port certainly hasn't stopped her (she's been stage 4 all this time and is still going strong).

    I'm not encouraging you to go against your doc's advice, but just surprised that you would need to be that careful. And I'm especially sorry to hear it's hurting. That's not fair!

    Hugs,
    Barbara
  • suzfive
    suzfive Member Posts: 456
    edited April 2007
    Where did they put your port? I had one for my chemo - it was located on the right side just to the right of my sternum about 2.5 to 3 inches below my collar bone. It hurt like hell when I first had it put in - but was no problem after a few days. My right arm would get sore if I slept on my right side - but nothing like you are describing. I would also get sore if I overdid it with my right arm - but was never told I could do nothing with my arm. After chemo when I wanted to get my port out - nurses were telling me that they knew people who had them in for 15 years!! Now that mine is gone - I miss it for blood draws since my veins stink and I have to get stuck so many times.

    Ports are supposed to be helpful - not painful. Maybe it is because of where it was placed? Not being able to do anything is awful - especially when you weren't told beforehand.

    Sorry you are going through all of this.

    Hugs,
    Sue
  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2007
    Gina, where is your port? Mine is in my chest under the skin. I don't even know it's there. It was terribly painful going in but then after it was there I've had no problems at all. You must have some sort of different kind that I've never heard of. The only time I even think of my port being in is when I have to go have it flushed every few weeks. I'm curious to know about yours.

    pals
    cheri
  • fancy2
    fancy2 Member Posts: 162
    edited April 2007
    Gina, here's my thought--wait for it--get a second opinion. I don't think a port is supposed to be so limiting. Ask a nurse? Ask your onc? Don't take one doctor's word for everything. But you knew that, didn't you?

    VBG
  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2007
    Hi Gina -
    So sorry you're having probs w/the frickin' port! I had a horrible time w/mine! But, I did everything with it in... Moderation is everything...hang in there!
  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2007

    Gina...I agree with everyone else. The port is supposed to make everything easier, not more limiting & difficult! If it were a PICC line, I'd understand it's being a nuisance. So definitely check out other professional advice about this. I've just never heard of such a thing!

  • Maria_C_
    Maria_C_ Member Posts: 69
    edited April 2007
    G.,
    I had my port for 1 year and a half.
    What I was told by my surgeon that put it in,
    was that I should be careful as to weight and moves
    the next first week or so, so that could heal.
    Then could do things normally just as I did always.

    If your port was very recently inserted, well ...
    Still is fresh and that thing is sew in the muscle, so ...
    At any move the muscle can hurt
    but not pain or terrible limitations;
    after some couple of weeks of having it
    at least I didn't even feel it.
    I for one did everything with that stuff in
    and never had limitations.
    My only problem was that I sleep for that side and
    yes, then with my strange ways of sleeping,
    I would smash that stuff
    between my collar bone and shoulder during the night
    and of course would wake up a bit sore in there,
    but apart from that never hurt me on any situation,
    neither I had a problem with stuff
    like moving the furniture, shopping, pruning,
    take out the windows and put them in again,
    and things of the kind.

    Did you had an XR after inserting your Port?
    I do not know in there but once one has one of those things in,
    in here right after they take an XR, then later
    when taking out the port they ask and XR too
    and some weeks later an heart ultrasound
    to check if everything is ok.
    Would be good to have that for future reference and just in case,
    some move after, nothing out of normal, can happen to some people,
    and in some cases to others sometimes is too much,
    and since you talked about heart problems and such,
    at least I think you should have that XR.
    Ports, those that usually are inserted bellow the
    collar bone near the shoulder
    are plugged to a main vein that goes to the heart
    (would be good if I could remember what's the name of that ...)
    and nothing clearer then an XR to see if that thing
    is well done, in the right place or if something is going on with it.

    Check this, kids that have to use ports to when on treatment,
    ok, they put them in them some place else, such as arm for instance,
    but I do not believe that a kid can stay still for months
    because the port. My chemo room was close to a kid's chemo room
    and most were just as jumpy when for each treatment as any other kid.

    And since we are on this, just in case,
    when you start chemo get those stamps ... "anesthetic stamps"
    Sorry this is bad today, can not remember the name of the thing...
    well anesthetic stamps to use on the port,
    put it when you are to go for your treatment.
    And if you do blood work or have to do things like
    "cleaning" of the port, or anything that they may do on it,
    don't let no one use any other needdle then specific needles for ports,
    NEVER, that can ruin it VERY, VERY, VERY, VERY easily.
    If they invented specific needles for this,
    that's because they are needed.

    G., you probably will need help in some situations,
    and at times even put aside that thing we all have of
    being wander woman and do it all at the same time,
    can even take a while to learn how to accept help,
    but that does not mean total dependence and not moving
    and so many don't's such as that with the port, geez ...
    A bit more and you can not even sneeze.
    Have you check the moves we do and
    the strength we make on and around our chest,
    when we sneeze or even laugh?
    Well ... in my humble opinion, considering the line of thought,
    I think you should ask this to your surgeon too.

    Hugs.

    __________

    "... I am not known for my spelling abilities ..."

    Carrie don't worry ...
    there's no HOLEY MOLEY in Portuguese,
    I mean ... no translation that I know of, so ... image
    no one will ever notice it.... at least in here.
    The worst it can happen is someone asking things like, who's MOLEY? image

    .
  • ArmyNavyMom
    ArmyNavyMom Member Posts: 303
    edited April 2007
    Gina,

    I was told to take it a little easy for a week after my surgeon put my port in, but after that swim, walk, hike - whatever. My surgeon told me he had one lady who played tennis with hers!

    I have a "Bard-Port"; maybe yours is a different brand and that makes the difference? It does seem like all the restrictions you've been given defeat the purpose.

    Hugs,
    Anne
  • slanderson
    slanderson Member Posts: 152
    edited April 2007
    No, that doesn't sound right. Mine did limit me a little, but it didn't hurt at all. Even right after the surgery to put it in. Now coming out was another story, very sore and was a like a bad bruise that took a long time to get well. I'm not sure what to say....

    SHannon
  • nosurrender
    nosurrender Member Posts: 2,019
    edited April 2007
    Thank you for your responses.
    Maria, you really know your ports! I didn't even know that about the special needles.

    I was told to come in to see the doc tonight- he has evening hours on Thursdays- his nurse said there shouldn't be this much pain.

    So I drove over and I can't even use the arm to drive!

    He said it is either an infection brewing, a blood clot, or something wrong with the way my freshly scraped muscle is "accepting" it.
    If the pain increases then tomorrow he wants me to get a doppler of the thing to see if I have the clot.
    I do not want anything pressing on it!

    And on another note---
    Right before I am to leave for the doc, my sister calls me from Virginia where she lives with my mom and tells me mom had a heart attack or something like one while getting a colonoscopy today! So she has been admitted and they are going to do that angio thing on her tomorrow and if they can open it they will use a stent, but if not she will need bypass.

    My sister is not very good at relaying information from medical people so it was hard to understand just how bad this is.

    Which leads me to my other freak out about doing the adriamycin next week. We have really bad heart disease in my family. People die young and fast with it. I already have had a retinal clot which if it didn't go to the retina would have been a stroke and I have to be on plavix for the rest of my life. I had left breast radiation, and women who have had that have a 30-something percent chance of heart disease from that alone.

    I am really rethinking my tx. Maybe I should go back to the doc and tell him to give me the taxotere/Cytoxin combo I had researched???

    Right now, I can't imagine ANY chemo being put in this stupid port.

    I am sick of the Beast tonight.

    THANK YOU for all your help.

    Love,
    g
  • tos
    tos Member Posts: 376
    edited April 2007
    Well I wrote you Gina and it didnt' go thru but I wanted to send my prayers for your mother and hope she is doing ok today.
    I'm so glad you are going in to get your port checked, let us know what you find out. You have so much to worry about right now, I hope it isn't anything major.
    I just had one put in last week during my mastectomy and I wasn't told to not do anything.
    I would talk to my Onc about the A but bet you have already done that, did he feel it was safe for you?
  • nosurrender
    nosurrender Member Posts: 2,019
    edited April 2007
    Thanks. The problem with it now is I cannnot move my arm at all. The pain is really severe and if he has to remove it and "try again" I think I will just skip town or something!

    I tried the onc's office today but they were closed. Is today some kind of holiday?
  • newter
    newter Member Posts: 4,330
    edited April 2007
    Hi,

    I have a question regarding heart disease and radiation. Maybe I did not give it much thought while I was having it since I was so happy to be done with chemo, anyway, is there a difference in right and left side when it comes to heart disease? I ask because you specifically mention left breast radiation.

    Thanks,
    Newter
  • newter
    newter Member Posts: 4,330
    edited April 2007
    Gosh No Surrender,
    Please accept my apology. I went right into my question and did not even acknowledge your mom or your pain from your port. I can't even really blame chemo brain anymore, can I? My thoughts are with you and I hope the port situation improves very soon for you. I myself have a colonoscopy appointment in two weeks.

    Newter

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