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[Joy]

Hi all, I've had no computer for a while and have spent much of the day catching up. I so hope holidays brought some warmth and happiness to each of you. Mine were lovely and I'm so lucky to have the family that I do.

I've been ruminating on something though and it really has me sad today (Lisa and Hope's passings are also making me very sad for all involved).

In November, as I shared, I had a CT that showed that since I started Navelbine with Herceptin in September my biggest liver met had shrunk by 50% and another stubborn one was gone. I had also had the CTC 5 weeks into this treatment that showed 0 CTC's. All great news. My CA27.29 has always been fairly accurate since we began using them several years ago. Prior to the November scan it had dropped from the high 200's to about 150 ish-had the scan-good news-had another CA 27.29 it was still about 150. I had it drawn again 2 weeks ago and it is only down to 143.

When I was on taxol/carbo/herc after about 6 mos the markers hovered around 80 for another 2 months and that was when we switched gears.

I have this fear that after only 4 months this is plateauing also. This means I am starting to run through treatments quickly. I feel fine other than a stupid chest cold that is finally getting better after a few weeks.

Do you think there is any hope that the navelbine is still causing regression? Am I just freaking out for no good reason? I have never been NED and I would so love to be (duh-don't we all). I know stable disease is good too. All I know is that I'm not ready to start running out of options. I can't leave my kids, I just can't.

been missing all of you and am glad to be back in the 21st century a little.

[Vanessa]

Hi Joy,

I was reading your post and kind of identified with how you are feeling. I am also Stage 4 with mets to the liver. At times, I become overwhelmed with sadness about possibly having to leave my daughters. I also now have 2 grandchildren coming in June and I wonder if I will be around long enough to get to know them. I mostly get scared at night after I turn out the lights. I think it is very common to feel very frightened of this disease and be afraid that we might run out of options. On the other hand, I don't know a lot about the numbers you quoted, but from what I have read there are still other treatment options out there. I just try to remember that are new treatments coming along and I also try to be optimistic about being the recipient of these new treatments.

I am glad you enjoyed your Christmas. I had a good Christmas with my family also and am looking forward to a better year. I was diagnosed in April of this year, had my surgery and chemo. I am continuing with the Herceptin.

I am hoping that your new year is great and that the Navelbine continues to work!! Best wishes.

[Leslie's sister]

Joy- I have no answers for you, it sounds like you have a great onc and are aggressively attacking this awful disease. I just wanted to let you know that you are in my prayers as well. You are a great inspiration on this board and have uplifted alot of ladies. Your name says it all. Your posts are filled with joy. I pray that you hear the word "NED" is 07!

[tricia keegan]

Joy I think I can understand what you're saying and your fear's although I am not stage iv but found myself depressed this Christmas worrying about whether I would be next year.

It sounds to me like you're doing very well handling all this and on the treatments you're having so maybe like me,you're just feeling a little Christmas fear rather than Christmas cheer!!
Especially with thoughts of Lisa and hope,I know I've been concerned about my friend Carol H who posts here too and feel Christmas is one of those milestones that sets us thinking in a year.

I too really hope you become NED this year and stay that way.
Sorry i could'nt help more though but wanted to send good thoughts and wishes your way for '07!
Tricia

[tousled1]

Joy,

Although I'm not stage iv I certainly understand how you are feeling. This is a dreadful and unpredictable disease. I do believe that the Holiday Season brings some thoughts about our future. I know I worry about how long I'll be around. I want to see my grandson grow up. Your oncologist is treating you aggressively and seems to be aware of all the new treatments becoming available. I know it's hard but do try to look at the positive - you are stable and I'm praying that 2007 will bring you to being NED!

[Mary Anne in TX]

Hi Joy!

I just finished Navelbine and Herceptin. My CATs are clear but my CA27-29 is still up, not as high as it had been but up. When I saw the doctor 1 1/2 weeks ago, he patiently listened to my fears and then went through my chart with me to show me that my markers had been up before. He said that he had people who's markers never went all the way down again, but who did great! As always, he told me there are no promises, but that he was really thrilled with the disappearance of the places on my kidney and that he was very hopeful and pleased with where I am. I just decided to ride the wave of "GOOD" for now and expect the Herceptin to keep things in check for now. He did tell me that he would put me on another targeted drug after Herceptin ends in June. He's very aggressive with my treatment and I love it.
Why not take a little break from worrying with me and we'll just enjoy the good news for now! My brain just needs a "stress break"!
I do understand your worry and know my words can't take it away, but I hope you'll find some much deserved peace and happiness to begin this new year! I'm believing we'll have more good news and the researchers will continue to bless us with new drugs!
Much love,

[Jean]

Dear Joy,

I just wanted to reach out and tell you that I too felt extremely sad over Lisa.
It is very painful and difficult to loose one of us. I can also relate to your
fears and I believe each one of us prays for a cure each and every day.
It is so hard at the end of the day when we close the lights and
thoughts comes rushing at us....

I have always admired your posts and you are a great inspiration to me.
I am keeping you in my prayers and sending you positive energy.
Let's look forward to a New Year with New Hope!

Love,
Jean

[sherri]

Hi Joy,

I like to add to Jean's post: New Year, New Hope and the Joy of being alive at this moment and having a good family and freinds.

Big hug,

[TriciaK]

Dear Joy, I always love your posts because of your smile! I just can't help smiling back. My prayers go out to you with the fears you are feeling now. It is hard not to feel afraid of the future anyway with the crazy world we live in, and this beastly BC makes it so much worse. I don't know if it is any comfort to know many of us have been fighting a long time and we are still here! I think you know my story, but I'll remind you that I was first diagnosed in 1985, had a double mastectomy, no chemo or anything. It came back in my spine in 1990, again no chemo, just nonconventional treatment, including hypnosis, and tamoxifen. In the summer of 2004 I had a heart attack and in prep for heart surgery a CT scan found the cancer back, this time in my lungs. My oncologist said I would have had only 3 months if we hadn't found it because this time it was her2, and estrogen/progesterin positive. I had navelbine for 6 months with herceptin and femara, then herceptin and femara for a year until my EF dropped too low to continue. We stopped the herceptin and I had a triple bypass this past summer. My last two PET's were NED and I am due for another soon. I feel really good and positive about it all. I realize I am a lot older than you are and my children are grown (and some of them have grandchildren!) so I have lived a full life, but I have often known the kind of fear you are feeling. I have a lot of faith, and I have learned that fear and faith cannot exist at the same time---one will cancel out the other. So only by increasing your faith can you decrease the fear! Please let us know how things go for you, because the people on this website really do care. I'll be praying for you! Hugs, Tricia

[Sherryg683]

Oh Joy, I don't know if we ever can have peace of mind anymore, this disease causes such fear and worry. I am stage IV and have been NED for right at 9 months and I still feel just as afraid as when I was going through chemo. Although, time is making it a little better. I was trying to think of one thing good that has come of this and the only thing I can think of is that it has brought me to know Jesus. When my life was going good, I don't think I would have been driven in that direction. When I get too afraid, I just remember that it is really out of my hands and in the hands of Jesus. I have young children also and I know how you are feeling. All I know to say is keep the faith and pray hard...sherryg683

[Vanessa]

Joy, I hope you are feeling better today!

[Joy]

Thank you so much for your support. Isn't it just an age-old truth that knowing you are not alone is comforting. I mean it is only you who really get the fear, the uncertainty so fully. And yet I so wish that NO ONE, I mean NO ONE EVER had to know these feelings. I don't wish this on anyone-not even the weasel that came into my house and stole my jewelry box and antidepressents last week-yes it has been quite a month.

I am trying to pick myself up and continue to be hopeful for new treatments, continued good health overall and learning the lessons I need to about living life.

2006 has been a very hard year for so many people close to me. Many health and relationship issues, losses of loved ones, etc. Has that been true for you too? I have felt very rollercoaster-y this whole year. We have all suffered, are suffering, from the great losses experienced here on the site (now my eyes are all wet).

Anyway, I see this amazing woman for reiki and really so much more. She is tapped into somethin'. She said, for what it is worth, that 2006 was always supposed to be really hard, but that 2007 is to be a very good and "powerful" year. So I hope that we can all collectively pray for and energize big, great things for 2007.

I love you all so much and hoping you all find something to celebrate as we move into a new year.

And Tricia, a special thank you to you for reminding me of your struggles and TRIUMPHS. I have so much respect for all of it. Your words mean so much to me, thank you. And talk about a great smile!

[rinaina]

Joy, don't you thank G-d every day for all these wonderful supportive members on this forum? I know when I am down I can count on all the sisters on here to get me back in the groove and focus on the good each new day brings. I can't truly imagine what you feel being that I am stage I but I too have my fears of a reoccurence or a metastisis. I think once you are diagnosed with cancer everyone feels fear on and off. The best advice I can give is to make sure you are occupied and keep busy as best as you can. Sometimes I even have to take breaks from reading scary posts on here or reading scary facts in general...it can really get to you. Every ache or pain has me thinking could this be a bad sign. I had a little rectal bleeding while I was away and immediately feared the worst forgetting that I have internal and external hemmorroids. Going for my colonoscoypy though in spring...go every 2 years since finding a precancerous polyp. For the most part life is good and hopefully this down period you are experiencing will pass as did others. I pray for you to have an NED period soon as you are so deserving of some good fortune. You are someone so special to all of us. Here's to a year of good news for all.

[DEBBIE S]

Joy, Hello.... There are times I think this will be my last Christmas, or the last time I will celebrate someone's birthday, etc ... But, I remind myself that no one is promised tomorrow....I know being stage 4 is a heavy burden to bear ....I try to remember that Jesus does not give one more than they can handle ... I too had been on herc and navelbeine from 6/05 till 9/06 .. it worked well for me ... I just currently in 9/6 stopped the navelbeine to do hercp alone, again .. so far it has been working ... my onco does not do any of the tumor marker test, she relys on pet/ct scans and so far this has worked ... Remember there are many other drugs to use and new ones that will surely be available in the next year or two ...I try to keep focused on work and setting new goals for this year ... this year so far has been sunny and warm in the WASH DC area which helps plenty of us whose moods can
be affected by the cold, damp and drap winter weather... Joy, tomorrow will be a better day for you !!! Hang in there and Gold Bless You....

Take Care,

Debbie

[Joy]

that was a really nice and encouraging post. I 'm sending you successful Herceptin vibes and keep in touch.