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Between the Devil ( the red one) and the deep blue sea

     I honestly did not know what forum to post under since I am all over the place and on so many threads and wanted all of you to know what is going on with me now.  I am Stage lV, but unlike some do not consider that anything special or feel intruded upon when someone who is not Stage lV, posts on a Stage lV forum.  The way I look at it, we are all in this together and all in the same boat....some of us just may be better swimmers and won't drown as soon.   Face it, cancer or not, we are all terminal because none of us live forever.

      I consult with quite a few different oncos, the one I have been with for almost 14 years (ever since I was diagnosed with mets and went to Stage lV), the one I saw at MDAnderson, and then another one I consulted with here in Cincinnati.  I was all set to change local oncos, but then the other one had a nurse give me recommendations over the phone, which did not really set right with me.....I mean shouldn't the Dr. himself be doing this?  Anyway, I did not like his recommendations.....adriamycin or carboplatin with taxotere.    If you read my history in my profile you will see that I had very bad side effects with abraxane and the onco at MDA said I exhibited extreme toxicity to it.   So I want to avoid that taxol family if at all possible.  And I decided to stay with the one I have been seeing....... I do not always agree with him, but he has kept me going all this time and I do think he is a very smart guy......a little hard to get close to, but that is just him.  

I was having a lot of back pain the past month or so.  Some of this no doubt brought on by the fact I had been painting and hanging window treatments and doing all sorts of things at my Dad's in addition to trimming a 10 ft tree and hanging garlands and such in getting ready for an Xmas open house.....Which was a huge success, I am happy to say.  That party was my present to me....I really really wanted to have a nice party and I did.   Anyway, I went to my orthopedic doctor whom I have been with for year and he gave me a Rx for celebrex for both my back and the artificial knee which has been bothering me also and he scheduled a MRI of my thoracic and lumbar spine.   I have had chronic problems with the lumbar for a long time and discomfort comes and goes and sometimes I wear a back brace that he fitted me for.   This current problem was higher.  It was a deep pain that sort of radiated out...was sort of a tingling hot feeling like nerves were being stretched or something.

Monday I had my MRI and when it was over the tech was asking me all these questions as they so often do like, Have you even done chemo,  are you having a lot of discomfort, I hope you feel better soon.   I always give the same reply I have done lots of treatments, I am not really that bad off and am still able to work and I don't feel sick.   I know their comments mean they are seeing all sorts of things and probably wonder how I am walking around.   But really, I do not feel bad, just don't like to have to live with pain if there is something I can do to get rid of it.  

I went to get the MRI results Tues after work.  I always go get the report myself so I can see what it says and be sure they are telling me everything.  It talked about the mets and the progression...mentioned by sternum which is where this all started and about 2/3 eaten up (not what they said of course, but how I think of it), a bunch of T's and L's, but  how the canal is not affected, degeneration of discs, some compressed areas, etc, but the part that really got my attention was when they commented on the liver.  It said tumors too numerous to count and I thought Ye Gods, I knew there were four of them and it's the big one everyone has been concerned about....it's something like 8.7 X 6.7 cm (don't quote me on this, don't have my CT here to read) and that is BIG.  Oddly enough it is not causing me any problems yet, but when I saw my onco last week he said that is what we want to avoid and we do NOT want to let it  get to the point where it interferes with the bile ducts.   So he had also suggested starting low dose adriamycin. I asked when and he said ASAP.   I didn't want to that week because of my party, didn't want to this week because I had a big week at work scheduled and also an office party on the 10th so we agreed on Dec. 14,.    In the meantime however, I was researching on line and sending my records to John Hopkins hoping they could just go in there and cut out the big tumor.   I told the woman I spoke with on the phone I was not looking for a cure, knew there was none, all I wanted was more time.

When I got home after picking up the report there was a message to call my onco's office and I knew it was about my INR which I have checked weekly, not the scan since he probably doesn't even look at things for days or maybe the day I have an appt.   I was right, they told me to increase my dose since I only registered 1.6 and they want it between 2-3.  So I told the nurse I had been offered an appt on the 7th, but didn't take it and wanted to know if they could still get me started on the treatment.  She said they need an recent echo or muga for that and I told her I had one in Oct.  So she said she would talk to the Dr. and get back to me.  To make a long story short, they did not have the last echo report for some reason and said they would get it in the morning and if they accomplished that the Dr. said it was all symptoms go. 

Yesterday afternoon I got my lst treatment and so far so good.   I know it takes awhile to feel the effects of anything, but at the same time I am always thinking my nails will immediately fall or or I will look in the mirror and suddenly be bald even though I have been through this before and know it doesn't happen that way.   I also know from the last four chemos that failed, I do not get normal SEs.....I have never had nausea, have not had severe neuropathy, did not get HFS with Gemzar or even diarrhea for that matter and have never really had much fatigue although would crash after the premed steriods wore off with different treatments. I am  hoping it is the same with this one, but I did take a zofran pill before I went to bed last night just to play it safe. 

I will be getting lowdose weekly adriamycin until we find out it is not working.  He told me there is only a 20 -30% chance this will work and I asked him if there is an even worse chemo out there that he thinks maybe we should be trying now and he said No.  He also said he would not be trying this one unless he felt there was a chance it would work.  He could not understand why I thought John Hopkins was a possibility with so many tumors in my liver and I said I didn't know there were so many.   According to him they have been there, but the CAT scan doesn't pick them up when they are that small, which makes me wonder why they don't do MRIs all the time.  I wonder about everything truth be told and I do not think they appreciate when I always have questions.  I will still be getting my monthly injection of Xgeva for my bones.  And time will tell if this one is working.   He did the CA27.29 yesterday which I am guessing will be at least 7,000 by now since it was 6,444.3 a month ago.....I am going for a record with them, that's for sure.  The odd thing is I do not really feel bad and I honestly look as healthy as healthy can be and have a lot more energy than many of my friends.  I just don't get it.   We will do a CAT and a bone scan (his standard was of checking) in a few months and he will do the tumor markers of course and hopefully they will start going the other direction.  Liver function was still normal as of yesterday. 

I will keep you all posted....will continue to drop in and post on my normal threads, pets, spirited and more sensible women, my Xeloda friends, Stage lV chemo, recipes, the hormonals ( boy do I ever wish I could still do those) and the middies since my friend Elimar is on there, but this will be the main one I put the results of this drug on.  I would appreciate prayers and for those of you who don't pray, just keep me in your thoughts and wish for the best for me.   I am not ready to give up and unlike many do feel chemo is the way to go for me.....at least at this stage of the game.  20 - 30% is not a lot, but better being told it is hopeless.   Hope is what keeps me going. 

Have a good day everyone....sorry this is so wordy, but that is just me.      Marybe

Edited 7/16/2012   CA 27/29 results since starting on Adriamycin.   Am waiting now to see if I am able to stay on it and sure do hope I can in spite of the fact the echo showed my ejection fraction has gone down....seeing cardiologist tomorrow and last week they held my treatment....Bummer.

Dec. 7, 2011   7,444

Dec.28, 7,668  ( up slightly, but at least they slowed down)

January  2012  6,178

Feb. 8,    4.041

Feb.15,   3,289

March   2,373

April   1,507

May  885.2

June   528.9

July   325.8

August 203.4

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Comments

  • MiniMacsMom
    MiniMacsMom Member Posts: 15

    I don't know enough to comment about your TX plan, but I want to say good luck!  I live in Lexington and I am also an MDA patient ;)  Anyway when I was there a few weeks ago, they have that news letter and they are testing a special machine that makes liver surgery more easy. (I think its in conjunction with St. Lukes down there)  Apparently the liver is really soft/spongy and difficult to due surgery on, but this machine/technique seems to make things better.  I can't find the newsletter online, and I don't have my hard copy anymore... so I am sorry this is so un-supported.  Good luck either way!  I hope that everything works out and you can continue feeling good.  :)

  • chrissyb
    chrissyb Member Posts: 11,438

    Oh Marybe I was wondering what you were doing. I sure hope this works for you with little or no se's. (((((Hugs)))))) to you for your courage, fortitude and determination. Keep us posted please as we all worry like the dickens when we don't hear from you.



    Love n hugs. Chrissy

  • barsco1963
    barsco1963 Member Posts: 879

    Marybe - It is good to hear that you are still feeling well. I will definately keep you in my prayers. I do hope that this tx does work for you.

    ((Hugs))

  • pickle
    pickle Member Posts: 70

    Wishing you all the best and I will keep you in my thoughts.

    Hugs

    Beth

  • barbe1958
    barbe1958 Member Posts: 7,605

    AHA!! I found you!!! I had wondered where you had disappeared to after your party. I will keep this thread in my favourites so I can keep up on how you are doing. I think it's amazing that you feel so well!! Weird, eh?? You'd really think it would be the other way around. Makes you almost wonder why you even have to do chemo, but I understand the medical needs, it's just frustrating for you I'm sure.

    I hope they resolve your back pain sooner rather than later. I'm rooting for you, sweetie! You are deeply embedded in my prayers...

    With love,

  • 208sandy
    208sandy Member Posts: 582

    Marybe - I've been following your posts for a long time and I was especially taken with your party plans for the season - you are a wonder.  That said, you will be in my thoughts continuously, I am sending you best wishes and warm hugs that the treatment won't be too bad but bad enough to work.

    Sandy

  • jeanieb2
    jeanieb2 Member Posts: 130

    Marybe - I am glad I found you.  I have been wondering how you are and what was going on.  I knew you were preparing for the big Christmas party and I am so glad you got to have that.  I will be putting you on my prayer list, right at the top.  I pray this will be the chemo that works for you and that you do not have a lot of side effects.  I feel like you do that if I don't have side effects it is not working but that is not always true and I also felt the minute I took the chemo all the side effects would start, kind of silly but that is just the way I am.  Try and stay strong and take care of YOU, you are what is important right now and you need to fight with everything you have, of course you know that and have been doing that for all of these years.  I truly admire your spirit and attitude and I do look up to you at how positive you always are.  Of course, you are entitled to have some bad days where you are crabby or just plain frustrated, so don't hesitate to say what you are feeling on this post.  You are the one I think about when I start wondering if Xeloda is going to work or not and then what do I do.  I always remember that you said you have tried so many things and that gives me the hope I need to not worry about if it does not work.  Many prayers coming your way, God Bless you Marybe!

  • dragonflymary
    dragonflymary Member Posts: 325

    Marybe, you're so beautiful.  You're in my thoughts and prayers.  Love, Lynda 

  • lulubee
    lulubee Member Posts: 903

    Marybe, you're a marvel.  Yeah, you are sitting there shaking your head NO NO NO... but sorry girlfriend, you just ARE.

    I am a praying gal, and I am praying for beauty and blessings in your life, and perfect peace, come what may.

  • heidihill
    heidihill Member Posts: 1,856

    I wish you all of that 20-30% and much more!! Sending positive thoughts and prayers.

  • belleeast
    belleeast Member Posts: 96

    marybe, you are in my thoughts and prayers, praying this treatment works and your back pain goes away! so you can continue to enjoy your life without pain.

  • Kaara
    Kaara Member Posts: 2,101

    Marybe:  You were one of the first people I talked to when I joined this site, and you gave me words of encouragement.  I would like to do the same for you now.  You have a very positive outlook on life and that is what is keeping you going with so few symptoms.  Do the treatments you feel comfortable with and hope for all things positive.  I will be praying for you and sending you positive healing energy!

  • profbee
    profbee Member Posts: 304

    Best of luck, Marybe.  You have such a wonderful attitude!  (People say that a lot, but really...you're awesome.)  I'll be thinking of you---man, 10 foot tree?!  Wow.  :)  Enjoy the holidays, and we're here to support you!

  • AlaskaAngel
    AlaskaAngel Member Posts: 694

    Hello Marybe,

    Between your focus on your treatments and your excellent writing skills, I think your post is so important here. It says so much so simply about making the best sense each of us can as we go along of the changing playing field, and about staying connected to other parts of life in our own individual way.

    Time to get out the spirit of the season!

    Wishing you the best,

    AlaskaAngel

  • susgul
    susgul Member Posts: 104

    You are so brave, Marybe.  You just keep on keeping on.  I will pray that this treatment helps. 

    Susan (susgul)

  • angelsister
    angelsister Member Posts: 49

    As the se's haven't kicked in yet i will be keeping everything crossed that you are spared them altogether. Im glad you enjoyed your party! Very best wishes marybe x

  • bluedahlia
    bluedahlia Member Posts: 302

    You are in my thoughts.

  • cp418
    cp418 Member Posts: 359

    Marybe -- You are an incredible awesome lady!  You are in my prayers and I am sending healing vibes and HUGS your way!!  Joann

  • kiley56
    kiley56 Member Posts: 94

    Oh Marybe, you are sooo in my prayers !!  You are an inspiration to us All !  Hugs and many, many, Prayers to you !      Kiley

  • lassie11
    lassie11 Member Posts: 468

    I too have been following your story, Marybe, and promise that you are very much in my thoughts.

  • Leah_S
    Leah_S Member Posts: 1,929

    Marybe, I'm so glad to hear from you again! I was starting to get worried since it had been so long but was glad to see that it was because it was party time.

    Enjoy the holidays, enjoy the parties, and until any SEs happen, pretend you're not on any treatment!

    Leah

  • 3jaysmom
    3jaysmom Member Posts: 2,604

    yeah marybe!!i just found this thread, of course, you know its  on my favoritesnow.. i wont bother you by calling, until you call me.. i knowyou need time to absorb all this news!!!

     im so glad you have your priorities straight .. LIFE << AND a good one!!! you go, girl. you know i love you, and pray everyday for you....3jays

  • cheryl1946
    cheryl1946 Member Posts: 62

    I'm praying for you Marybe,and hoping the treatment works.

  • omaz
    omaz Member Posts: 4,218
    Marybe - I am glad that you feel good and I hope the adriamycin kicks butt!!
  • littlemelons
    littlemelons Member Posts: 23

    Marybe -  Keeping you in my thoughts and wishing you the absolute best with your treatment.  You are such a vital person and an inspiration!

  • Isabella4
    Isabella4 Member Posts: 1,352

    Marybe...I am glad I have 'found' you again. I have been thinking of you and wondering if you'd found the party too much last w/end, and you were resting up.

    You are an incredible woman....very much loved by us all on these boards. HOW on earth you keep soldiering on with first one, then another treatment, I just don't know.

    I just hope this new treatment will start and make its mark sooner rather than later. I hope it doesn't kick in and floor you suddenly.  Is now the time to stop working, and concentrate on yourself ??? 

    You know you won't get prayers from me....just bucketloads of loving thoughts !!!!!   and I always have you uppermost in my thoughts, wondering how you are doing....each and every day.

    Keep on letting us know how things are doing, and, as susgul says ' You just keep on keeping on' 

    Isabella XX

  • badger
    badger Member Posts: 24,938

    Hey Marybe, praying for you and hoping the A works.  I will also have a glass of that lovely Prairie Fume' and drink to your health!  {{gentle hugs}}

  • QCA
    QCA Member Posts: 1,150

    Yes, Marybe, all of us worry when we don't hear something from you, but it's good to know you were just partying down!  I'm also praying that this new treatment will work and kick it in the butt again, and also for your relief from the back pain very soon.  Keep on keepin' on, girl.  Love you.

    Kathy

  • TexasKaren
    TexasKaren Member Posts: 151

    Glad you started a new thread...sometimes the larger ones get too mumbled up and hard to keep up with people.   You are a real trooper, gal, and I try to stay up with what is happening with you.  I definitely have prayers going for you.

    Did you see the report on ABC about the trial at MDAnderson for the "magic bullet", or "killer bomb" that one study is looking at?  The liver mets were decreased about 80%.  It's a new combination of two oral meds.... I'll have to look up the link again.

    Adriamycin is a booger, but it is also one of the longest proven therapies out there.  Hang in there; yes we've all been bald before.  Just remember, we can grow our's back.... my brother and my brother in law can't ever do that!  :)

    Love ya, and stay strong...!