Anyone starting Chemo in Feb?

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  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited June 2008

    Twilah,

    I've been reading your posts since I joined BCO, and just read your note of your PET/CT.

    Sonuvabitch.  I kept hoping it was the Chantix or some virus or anything .... My heart is with you and I'll keep you in my prayers every day.

    love,

    Bren

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  • wildabouthorses
    wildabouthorses Member Posts: 605
    edited June 2008

    TWINK!!! OMG! You are in my prayers...I am stunned! Sorry I haven't been posting or reading lately here on this board.  

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  • talbrig13
    talbrig13 Member Posts: 488
    edited June 2008

    Oh Twilah, I am crying with you.   I can't believe it...after 2 chemos already.   Do they really know what this monster is about?   I can imagine how alone you feel, as no one knows those feelings until it happens to them.  

    Again....I am praying for you.   Please try to keep a positive outlook, as you attitude is everything.

    ((((((Twilah))))))

    Love

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  • NarberthMom
    NarberthMom Member Posts: 615
    edited June 2008



    Twilah -- Thinking of you .... any news from the most recent MRIs?



    Mega-hugs,

    Hillary

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  • CommandoBarbie
    CommandoBarbie Member Posts: 535
    edited June 2008

    Hi Twink. I'm checking in on you too. Thinking of you and hope to hear from you soon. (((((Twink)))))

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2008

    {{{{{{{{{{{{{{Twink}}}}}}}}}}}}}}}

    You are living our worst nightmare and I am heartsick.  Dadgumit!!!

    This just can't be happening.  I wish I had something significant to say, but I am speechless.

    My heart hurts and I am so so sorry. 

    Take care of yourself and know you are in everyone's thoughts and prayers.  I love you, Sammie Kay

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  • talbrig13
    talbrig13 Member Posts: 488
    edited June 2008

    Twink.....how are you??  Thinking of you!

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  • CommandoBarbie
    CommandoBarbie Member Posts: 535
    edited June 2008

    Stopping in to check on Twink. Thinking of you and sending lots of love. (((Twink)))

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  • Leahrc
    Leahrc Member Posts: 459
    edited June 2008

    Twink

    We don't know how to read your silence. Is it that you know no new news or you aren't ready to share?  In any case, all of our love is coming your way.

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  • twink
    twink Member Posts: 1,574
    edited June 2008

    I'm sorry, I don't have any news andwon't until the onc appointment tomorrow.  The Brain and Spine scan results should be available for discussion tomorrow.  She will also try a find needle aspiration of the right axilla since I can't get a procedure scheduled locally until Wednesday.  I must say I'm feeling worse.  Not sure if it's because I know what's going on in my body or I'm really getting worse.  Haven't eaten for a couple of days but I'm drinking gallons of water.  Feeling overall pretty hopeless and can't imagine what will change that.  I'll post tomorrow.

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  • Leahrc
    Leahrc Member Posts: 459
    edited June 2008

    Thanks for sharing. We can't imagine how you are feeling waiting to go in tomorrow. Can't even say I feel like "yelling" at you about eating. Just do what feels right and try to get some sleep.

    Surrounding you with hope and peace.

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  • CommandoBarbie
    CommandoBarbie Member Posts: 535
    edited June 2008

    Twink! I'm so glad you posted. I second Leah's comments, do what feels right and take care of you. Please let us know what your schedule will be. You know we are here for you and sending lots of hugs, prayers and love.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2008

    I too am checking in to see how you are doing Twink.  Thanks for posting when I know you don't feel like it.  Really appreciate your thoughtfulness of the rest of us.

    We have traveled so far with you and continue to feel so close to you.  Like others have said, do what you feel is best for you.  I know under the same circumstances I couldn't eat either.  I just hope and pray things will be better than they seem from the preliminary reports. 

    I am sending you lots of love, prayers and hugs.  Love you, Sammie Kay

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  • Primel
    Primel Member Posts: 731
    edited June 2008

    Sweet Twink... I tried to send you a PM last night, but, turns out, Internet connections are not so hot in the West (WY, Montana, East WA).  We are now in Sequim (Olympic Peninsula) with a couple of hours ahead of us, and I wanted you to know that I've been thinking of you day and night, really, and my DH asks a lot about you, so we talk as we drive about your latest news, and the group I am so proud to belong to.  I would be sick to my stomach, too... maybe some kefir would help, so you do not get too out of balance if you are not eating... water alone may demineralize your body, and you do not want to get weaker.  But, do what you feel like.  The waiting is horrible.  Did you get to "the cutting Edge" forum on Gina's site? Carryn is so right: this man is God sent for us, he really seems to care, and is at the heart of bc research and clinical protocols (has a specil thread for triple negs and lots more).

    Like Leah, Hillary, Marsha and al. I wish I could be with you to comfort you, help one way or the other... your kids and DH must be trying their best, but this is your body, and nobody can be in your shoes exactly.  I cannot comprehend how it is possible in less than one year to detect a reactivation of the bc... I so much wish that your onc will have better news, finding out other reasons for the uptakes.  You are such a no non-sense and brave woman, sharing with us at a time which is not an easy one... I am sending you big warm hugs and kisses from fairly gray humid Sequim Bay... but beautiful area nevertheless, so similar to where we were in France: lush green, huge rhododendrons of all colours, calm waters of sounds and inlets... we are staying accross a marina where we are now going to walk the dogs before trying the 3 crabs cafe...  our 4th day on the road... tiring but definitely giving a sense of the country... incredible landscapes from day 1, and history everywhere... wonderful adventure... 

    My best to all of you, dear friends, as we try to circle the wagons here for our very dear Twink we all love and want to see taken care of in the best way possible.

    Will check in as soon as I can get a decent connection.

    Take care,

    Love

    Catherine 

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  • MelanieW
    MelanieW Member Posts: 326
    edited June 2008

    Twink;  I was hoping that today would be a bit kinder to you.  Most of the gals that you met in Dallas were here yesterday.  Tammy, Martha, Gail, Francine, Ashley, Sheila...were deeply concerned and wanted me to convey that they are thinking of you.  I know it has to be difficult to come here and post painful details, but you know how close we all feel to you and how much it helps us to go through this with you.  I feel rather selfish saying that...but, I hope that in some way it helps you also. 

    Love you girl...

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  • talbrig13
    talbrig13 Member Posts: 488
    edited June 2008

    Oh, Twink....I am so glad you posted.  I know it must be hard.  We are all helping you carry your burden.   Please know how many of us are thinking of you.   Please let us know how your onc appt goes, when you are up to it.    I can't imagine trying to eat either.   Maybe drink some Gatorade to keep the electrolytes up....this heat wave is not helping.

    Love you,

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  • talbrig13
    talbrig13 Member Posts: 488
    edited June 2008

    I know the mood is pretty somber right now, but I wanted to share a graduation picture....

    Rachel with Bill and me

    Michael pitching....a college scout saw him and asked about him.  But he is only 16 ...not his time yet!

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  • MelanieW
    MelanieW Member Posts: 326
    edited June 2008

    Terry;  You are absolutely glowing!  Your dd is gorgeous and hubby is obviously a lucky man. 

    Catherine;  How nice that you are seeing such beautiful landscapes.  What a treat for your "photo gene".  And how nice that some of it reminds you of your homeland.  I hope you and dh had a enjoyable meal at 3 Crabs.  I could go for a seaside meal about now. 

    Thinking of you all... 

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  • talbrig13
    talbrig13 Member Posts: 488
    edited June 2008

    Melanie....not exactly glowing....sweating maybe.   We are having a heat wave here....90+ degrees and high humidity.    Ugh!

    Catherine...hope you are having a relaxing time!

    Have a good week all.....Twink, thinking of you! (((((Twink))))

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  • NarberthMom
    NarberthMom Member Posts: 615
    edited June 2008

    Terry -- We're having the same heat wave ... our school system is letting kids out after half-day because of the heat, so I'm working from home. I have to second the opinion that you and your family looks great! What a coup for your son to have a scout interested in him!! These days, any little edge can help get into a better college ...



    I think that it is safe to say that we are all waiting on pins and needles to hear back from Twilah and see what her onc has to say ...



    Hugs to all,

    Hillary

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2008

    I am here waiting on pins and needles to hear from Twyla.  You are the first thought on my mind in the morning and all day long.  I am praying continuously for some good news.  Just know that you have all of our spirits with you.  I know what you mean about this being a solitary experience, but know we are all holding you up.  I wish I could be there to be your nurse.  I feel very helpless.  Just know that you are never out of my thoughts.

    Terry, great pics.  Your daughter is gorgeous.  You all look wonderful.  Hope your son continues on his baseball career.  Those scholarships really help a lot.

    Hugs to all as we gather with a lump in our throats for our dear, dear Twyla.  We love you Twy.

    Catherine, be sure and post pics.  You are such a photag....and a great one at that.  Hope you are having a great time.

    Hugs to all, Sammie Kay

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  • twink
    twink Member Posts: 1,574
    edited June 2008

    The good news is the brain is clear.  Everything else is bad.... extensive bone mets (per the report), potential bone marrow involvement in cervical spine area, suspicious liver spot could be more than that as the liver function is off, lung spots also inconclusive (so I started smoking again). I'm weak and, when not sleeping, a sobbing idiot.  Lexapro hasn't kicked in.  Onc prescribed morphine for the pain and compazine for the nausea and ativan for sleep.  I'm down another 2 pounds today.... amazing what a diet of water and cold stone ice cream will do for a girl's figure.

    Had my first infusion today - 1/2 hr abraxane, 1 1/2 avastin.  The U/S guided biopsy to reconfirm receptor status will happen Wednesday morning at the local hospital as the axilla area was sufficiently defined for a fine needle aspiration. 

    That's it for now....waiting for my son to get home from work then I'll sit all three kids down and tell them... not sure how that's going to go.

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  • NarberthMom
    NarberthMom Member Posts: 615
    edited June 2008



    Twilah -- First, thanks so much for posting right away. As Melanie said, we do all feel selfish about wanting the details, but it does help us.



    Second, brain MRI clear - is fantastic news!!!!!



    Third, let's hope that its mainly in the bone. From what I understand, the bone mets can be controlled!



    Fourth, as a fellow triple negative gal, I'm hoping that your receptor status HAS changed ...



    Finally, I'm sorry that I couldn't make it in to HUP today. The excessive heat wave meant that school let out early ... I hadn't heard from you, so I just stayed home today. Let me know when your next infusion is, and if I can come and keep you company. (As always, third floor suite is yours for the asking).



    Telling your kids is going to be tough ... I wish you all the wisdom and strength for that difficult conversation.



    Hugs,

    Hillary





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  • MelanieW
    MelanieW Member Posts: 326
    edited June 2008

    Twilah;  Thanks for letting us know.  I am so relieved that the brain is clear.  The rest just plain sucks.  I hate to use that word, but it fits.  I didn't realize you had not told your children.  What a day...blah.  Hillary said it perfect...wisdom and strength...even though it may be feigned...for now.

    I heard your name for the first time (outside of knowing you of course) yesterday as I was watching an old 60's movie.  Summer and Smoke was the movie and the girl with your name was just a brief character in the movie.  I love your name and I don't believe  that I had never heard it before.

    Love you...and I just want you to be okay.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2008

    Twyla, thanks so much for posting.  I feel like Hillary said, "selfish" but it means so much to us to hear how you are.  I pray the words will come to tell your children.  There is hope and life is one day at a time.  I know after the shock wears off and you have a "fight plan" that you will handle this with the same grace you handle everything.  I have been reading some on the mets and recurrence boards and noticed your posts there.  There are people there who are walking in your shoes and have words of hope for you.  Isn't BC.org a blessing?

    I hope you can feel our love and support.  It is here and very strong.  You continue to be on my mind all the time.  Love and hugs, Sammie Kay

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  • marshakb
    marshakb Member Posts: 1,664
    edited June 2008

    I'm finally home, I did speak to Leah while I was gone to keep up with you Twilah.  You call that doc back up and insist on something else if you are having naseau.  My 1st Onc gave me compazine and after I fired his ass my new one said "Compazine wouldn't help a hangover".   I survived on Butter Pecan Ice Cream while on chemo so you eat whatever you can sweetie.  We all love you so much and recognize the special soul that you are.  Yes we are selfish to want to her from you.  We are all thinking of you 24/7.  You know you can call anytime you need.  I'm glad to hear about the brain scan.

    I didn't realize you hadn't told the kids either.  I second Mel's BLAH.  Big hug (((((((((((((((((((((((((Twilah)))))))))))))))))))))))))))

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  • MelanieW
    MelanieW Member Posts: 326
    edited June 2008

    Obviously, we are all right on top of our computers and this board right now.  I hope you realize what you mean to all of us Twi..

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  • CommandoBarbie
    CommandoBarbie Member Posts: 535
    edited June 2008

    Twink - I second what everyone else has already said, thank you so much for letting us know how your are doing.


    That is fabulous news that the brain is clear. I've read really good things about avastin and mets. Keeping every appendage I have crossed for you that this is the cocktail that kicks the beast to the curb for you once and for all.


    I hope that you are feeling well this evening and that the side effects are, if not non existent, than at least minimal. And showing once again how different we all are, I did Compazine for nausea and thought it to be miracle drug. But as we all know, if something doesn't work for you, speak up right away. Tell ‘em it aint your first rodeo, and insist on better living thru pharmaceuticals, as I like to say. ;)


    You are indeed very special to us and you're in my daily thoughts and prayers. Much love and hugs to you.

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  • talbrig13
    talbrig13 Member Posts: 488
    edited June 2008

    Oh, Twink, I am so glad the brain is clear.  And I second what everyone else has already said.   There are many different chemo regimens to work with.  

    I am praying your conversation with the children is loving and comforting.  Children are your blessing and your strength too.  They will surprise you!

    I have been thinking of you constantly.  ((((((((hugs)))))))))

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  • Leahrc
    Leahrc Member Posts: 459
    edited June 2008

    Twilah,

    Hope the dawn of a new day finds you in a better place. You have survived the news, a return to chemo, and speaking to your children. You have a plan now for the next few weeks. You are more in control now, and that should feel a little better?

    Looking forward to talking to you soon. We love you so!

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