anyone starting chemo in Nov 2005

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  • kim825
    kim825 Member Posts: 284
    edited July 2007
    It seems like lately all I have is the wait and see, bad news. Saw Dr. Michaelson today. He asked how are you feeling. I said besides the daily headaches and new bump on my side, I feel great. (he wasn't laughing). My physical was great. While talking to him after the physical we talked about adding back the Carboplatin w/ the Abraxane. He also wants to do a head MRI sooner rather than later. So that will be next Tuesday. His thinking is that the Carbo might have been the one to keep this under control. We will see.
    I also contacted the Head of Medical Oncology at Fox Chase Cancer Center in Philidelphia. We saw her back in January for that second opinion. SHe has a clinical trial going on with Dasabinib (not sure of the spelling of that one). It is for persons with advanced metastic b/c that chemo has not worked for. I have an appointment with her on July 25. She wants to see me for evaluation before we talk about clinical trials. Right now my scans are still in August.
    So that is this week's update. Hope you are all doing well. Anna, your vacation sounds so wonderful.

    Kim
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  • Margerie
    Margerie Member Posts: 526
    edited July 2007
    Kim,

    I am sorry about the carbo news. I am sure you are pretty sick of chemo by now and your strength and grace amazes me. I want to come on here once and see you cursing a blue streak about it sometime

    I will be thinking of you Tuesday- good scan, good news. And good luck with your clinical trial. It may be a little tedious to get enrolled- but such exciting things on the frontier. Are you hanging out at the pool again this summer?

    We have had a cold snap- (60's) so instead of the pool, I decided it was art day. I am about to get out a bunch of acrylics and canvas for the kids. Wish me luck!
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  • Odalys
    Odalys Member Posts: 2,103
    edited July 2007
    Kim - I saw this quote and thought about you and how much you are having to endure. I hope it brings you some comfort.

    "The will of God will never take you where the Grace of God will not protect you"
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  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited July 2007
    Oh Kim, my heart goes out to you. I , like our other sisters am always praying for you.

    I have been staying busy with my new Myspace for our sisterhood. I have done some updating again.

    I love the women I have met too. Can't believe how many Myspace pages are for Breast Cancer Support. Is it okay if I post some pictures of you all???? I think I asked before, not sure.

    If I do, and you don't want it there, just tell me, and I will remove it.

    Anna, sounds like you are having a wonderful time. ENJOY!


    Love to you all

    Here is a picture of where I have been spending most of my time this summer.


    image

    image
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2007
    Oh, dearest Kim! You are surrounded by so much love-carry that with you! You remind me of a lady I just met at the oncology center yesterday-she just completed her 3rd chemo for liver cancer, and her hair started coming out in clumps yesterday. She said she called her daughter laughing and giggling while her daughter cried and sobbed. She told her daughter, "Don't cry, this is funny! You have to see how silly my head looks!"

    The reason you remind me of her is that despite the crap, you still see the humor (your quote about "other than the new bump on my side, I feel great"). Oh, how we all love and respect your perserverence! When you come at the bumps in the road....er, your side in this case...with a smile as your armor and God as your strength, you'll get through.

    Odalys, beautiful quote! Since dx. I have such a new love for uplifting quotes like that. I keep thinking I need to keep them all written in a journal for days that suck!

    ML-I love your MySpace. Fantastic work! Do you want a picture of my bald head and skinnny-from-the-chemo bod? Or me as my once again chubby self with absolute insane hair?

    Margerie-I always want to be the mom who pulls out the craft stuff for Daniel, but I just dread the clean up! Or, the other day I had Daniel help make Rice Krispie Treats, and he kept a)eating the cereal by the handful from the bowl b)licking the spoon after mixing, then double dipping c)un-doing all the shapes I was attempting to make the gooey mess into
    I finally gave up, gave him the giant spoon and said, "Have at it!"

    Anna-we miss your regular posts, but it sounds like you are having a heavenly time.

    Nancy, where the heck are you?!?!?!?

    Ok, gotta get going. Love and prayers, Deb
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2007

    by the way, ML, where is that amazing photo?! We don't live near anything so pretty!

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  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited July 2007
    The picture was taken from our boat at the Greenbrier River in Alderson West Va. The in-laws have a couple of homes over there and one here near us in Virginia.

    The one at the river is just for week end trips, and small get aways. Hey it's free, and very relaxing. I also have family at Virginia Beach and Myrtle Beach SC , and friends in Clearwater Fla.

    All free if I want to stay. Makes life wonderful for travel.

    I had really bad news this morning about my car....it had to go to the shop, and will cost about $1000.00 to get it out. Grrrrr.

    It's always the way as soon as they're paid for. Plus we just bought the new truck.....Grrrrrr I'm not happy. I was to leave for Georgia on Monday. NOW MY CAR HAS DIED.

    Susan's surgery is Thursday morning. They may not have my car fixed in time. Grrrrr

    But, everything happens for a reason. So I will just have to lay it in the hands of God. He knows best.

    Oh, BTW ~the address list is in the mail....LOL Sorry ...
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  • kim825
    kim825 Member Posts: 284
    edited July 2007
    Hi guys. I went for the brain MRI this morning. I wish I had better news to report. There is more swelling in the brain and I am back on the Decadron. I will speak to Dr. Michaelson on Monday to see what our next step will be. Anthony and I went away for a couple of days and I couldn't really enjoy myself. The headaches got so bad at times that I had to go and lay down. When we got home yesterday Anthony called Dr. Michaelson and we got the MRI done this morning. Unfortunately I wish we had better news to report.
    Just keep praying. Thanks.
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  • Margerie
    Margerie Member Posts: 526
    edited July 2007
    So frustrating, so heartbreaking KIM!! I wish so much for worry-free, pain-free, fear-free days for you!

    I hope your new treatment does wonders and I hope your chin is up during this difficult time. Is the decadron helping your headaches?

    Thinking of you,

    Margerie
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  • kim825
    kim825 Member Posts: 284
    edited July 2007

    Yes, Margerie. The decadron is helping. I just keep remembering what I looked like when I was on it back in January. But if it will help, I'll do anything.

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  • Odalys
    Odalys Member Posts: 2,103
    edited July 2007

    Oh, Kim. God Bless you. I'll keep praying for you.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2007
    Oh Kim, I'm praying hard. Please, Dear God, carry Kim in your gentle and loving hands, and please carry the burdens they hold in their hearts. We can not know the frustration they feel, but we can only pray that you, Dear Lord, ease their emotions with your loving grace. Amen!

    Love and prayers to you Kim and entire family!!!!! Deb
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  • Margerie
    Margerie Member Posts: 526
    edited July 2007
    Kim,

    I ran into some info on a trial of cisplatin for triple neg bc on the east coast.

    http://www.sciencedaily.com/releases/2007/04/070419172122.htm

    I am so sorry you and your family are going thru this!
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  • kim825
    kim825 Member Posts: 284
    edited July 2007

    Thank you Margerie. I will look into this.

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  • Odalys
    Odalys Member Posts: 2,103
    edited July 2007
    Hi ladies - How is everyone doing? I miss talking with you. We are doing fine. The new job keeps me really busy; working 50 hours a week. Oh well that is what I get for accepting an administrative position. I do love the work. For the first time in over 5 years my work has meaning and I know I am helping a lot of folks along the way.

    Anna - Are you still having fun? Your last few posts were so upbeat and cheerful. I almost wanted to join you.

    Kim - I hope your treatments are working and you are not in pain. Big gentle (((((hugs))))).

    MaryLou - How the heck are you? Is the grandson still keeping you busy? I gathered from your last few posts that you are having fun in MySpace?

    Debbie - Are you all settled in? How is the new place and have the neighbors welcomed you with open arms. How about Daniel, is he able to get his therapy there too?

    Lat56 - I hope you are having a good summer. Let us know how you are doing? Hope all is well.

    Nancy - I haven't seen you post in a long time. I sure hope all is well and you are just too busy.

    Kaye - May you be at peace. I miss you.

    BTW - I've been hanging out witht he Time to Circle the Wagon girs and really enjoy it. Come join us.

    Take care friends. Wishing everyon a great Sunday.

    Love and Hugs,
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  • Margerie
    Margerie Member Posts: 526
    edited July 2007
    image

    and my two boys, and some pics from our ALaska trip

    image

    image

    image

    image

    image

    image
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  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited July 2007
    Girls I just wanted to send prayers to you all. Kim a special prayer to you.

    I'm in Georgia now with my girlfriend. I'm really missing home. And Michael is really missing me too. I think it is good to be apart, we hope to go on a camping trip when I return. May be in the mood for some romance! LOL

    Things have been a little stressful with life in general. Mostly family stuff.....To Much Drama!

    I'm going to set up my reconstruction when I get home. I'd like to do it in September, I think it will be a little cooler by then.

    I wanted to have a great summer, and not have to worry about surgery...Grrrrr

    Think I will take my new "Perky" girls out for new years eve this year!

    I had fallen off the weight watchers trail , so I'm happy to report that I have been perfect here. I needed to get away and regroup.

    I just have to take care of me....It's important.

    Thanks to you guys for always understanding....

    Love you all.
    ML
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  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited July 2007

    BTW, the pictures are so good! Just beautiful.....Did you get the list Marg?

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  • Odalys
    Odalys Member Posts: 2,103
    edited July 2007
    Margerie - Great pics. Your kids have grown so much since the last pictures. They are beautiful and look so happy. I see the toothfairy paid your oldest a visit. What a great smile he has. You look fabulous!

    Mary Lou - Glad to hear from you. I hope you have a great time away from all the drama.

    Love and hugs,
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2007
    Oh are those pics beautiful!!! Margerie, the kids are equally, if not more beautiful! You look fantastic, too!


    Gotta go and buy a camera. The chemo fog monster took it's ugly rein and helped me lose our camera with OODLES of precious pictures on it!!!!!!!!!!!!!!!!!!!!!!!!! I am so dismayed at the whole thing.

    Love you all! Love and prayers, Deb
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2007
    Kim,
    How are you, my dear sister?

    ML-do you remember how many were left on the list?

    Love you all. When are we going to meet?
    Love and prayers, Deb
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  • Margerie
    Margerie Member Posts: 526
    edited July 2007
    Yes- it would be nice to meet. Early November?

    Kim- how are you? I am hoping well.

    Anna- did you see any of the Tour de France? My DH and I are big fans- the scenery is incredible. We want to make it to France next year to see it! I am wondering- where are all the 7-11's and the mattress stores? Is France really that beautiful everywhere? I have been state-wide my whole life.

    Mary Lou- I did get the list. Thanks! Package is off to the next person. Enjoyed the journal once again.

    Odalys- enjoyed your entry! Those darn, sweet kids!

    Anyway, I am doing well. Only 7 more herceptin infusions to go, but who is counting? Been off the exercise wagon since the kids have been out of school.

    My friend that is undergoing chemo for colon cancer is having quite a rough time. It is not pretty when the chemo is directed at your GI system. Only 3 more rounds to go for him.

    Hoping soon,chemo will be a thing of the past.............

    Wishing you all the best,
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  • kim825
    kim825 Member Posts: 284
    edited August 2007
    I am sorry I haven't been here to give you all an update. Computer time and me is just not working out right now. What has been decided for treatment is Whole Brain Radiation. My med oncologist and rad oncologist feel that this is best for me in the long run. Lets take care of these 3 spots and IF there is anything lingering around in there the WBR will zap it too. Wow I didn't realize how hard WBR would be. I know I've read here about woman who have had it but oh boy is this taking me for a loop. I have absolutely NO energy. The fatigue is something I've never experienced before and concentrating is not so great. Mornings are best then I go for rads and then I'm done the rest of the day. Me and the food network have become really great friends, LOL! I can't sit, can't stand and get bored very easily, but can't do anything. My caravan of people are taking excellent care of my kids and getting me to and from rads. If I don't have to drive I don't. I have another week and 1/2 of this and can't wait for it to be over. I kind of wished this happened when the kids went back to school but cancer doens't care. My next scan will be sometime in August and hopefully everything else is at bay like from May. (except the head).
    I have read all your updates and think of you often. Thank you so much for all the prayers. I will update as soon as possible.

    Kim
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  • Margerie
    Margerie Member Posts: 526
    edited August 2007
    Argghh Kim. I am sure you would like to be doing something else! I hope the next week goes by fast and you get lots of ideas for meals after your energy returns. I watched one of those cake decorating contests onn the Food Channel. They were making cakes for Elvis. I was hilarious and the cakes were incredible!

    Will be thinking of you. Hang in there!
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2007
    Oh Kim, what are you going to do for a celebration when you have completed this lousy treatment? That couldn't suck any more, could it.
    I have been praying for you-whenever you pop into my head I say a prayer (just said one now!).
    Marg-2 questions for you. One, how many people left on the package list? Two, I love that you watch those cake decorating contests! I don't even cook and I love to watch those.

    I better go, my cat threw up all over our bed, so I had better (unhappily) clean it up now.

    Love and prayers, Deb
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2007
    Margerie, I just caught a glance at how hilarious your kids actually are on that railroad thingy in the picture. Your daughter is happily doing her own thing in her calm universe. One son is trying to climb into oblivion (did I spell that right?), and the other has the funniest expression ever!!!!!!!!!!!!!! That just cracked me up!
    Deb
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  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited August 2007
    Well I'm home and back to work....

    I was so tired after being off for so long. But I did build up my arm mussels lifting the baby . Wow, my baby just turned 25, so it has been a long time since I've had to lift a baby several times a day. And my back still hurts from nightly baths. LOL

    Emma is 23 pounds, and crawling very fast now. I had to watch her for my friend Susan while she recovered from surgery.

    Her daughter had nobody but me to ask. Due to
    Emma having Cystic Fibrosis. Lot's of special care.

    I'm very thankful for Sebastian being so healthy.

    Deb, not sure of the # of people left. Hope it's not to long before you get the package back. It was wonderful to read all the updates in the Journal.

    Kim, this whole thing just "SUCKS" for you. I'm holding you in my prayers. Maybe we should all come to Pa for our get together. ????

    This year we need to do this no matter what.

    Well I need to get busy, so LOVE and HUGS to you all.

    BTW, I lost 12 lbs while I was gone, and have stayed on program since I have been home . I'm short so nobody really noticed, but I feel the change and can see things that others don't see. (And they never will! LOL
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  • Odalys
    Odalys Member Posts: 2,103
    edited August 2007
    Hi ladies - How is everyone doing these days?

    Kim - I continue to pray for you. I hope you are doing better.

    Margerie - hope you are enjoying the summer with the kids.

    Deb - Hope you are all settled in your new home and are making new friends. How is Daniel doing?

    Anna - Are you still oversees? I hope you come back with great pics to share with us?

    Mary Lou - I like the idea of going to PA to visit Kim for our get together. Although, Kim may disagree.

    Lat56 - hope is not too hot for you and you are enjoying your summer.

    I have some news I want to share with you. My baby sister had a mammogram and they discovered a nodule on her right breast. She had her ultrasound today and it was confirmed. They are calling it a suspicious category 4 nodule. She is going for a bx next week. All I can say is crap, crap, crap this can not be happening to her. Crap!!!
    I hate this disease.

    We are trying to stay in the now. But I have to confess I am scared to death for her. She has so many other medical problems she really does not need this too. Also, I am worried for my parents. Mom ended up having several heart attacks while I was undergoing chemo. She certainly can not go through this roller coaster ride again. Dad still has a hard time talking about my bc dx and that was almost 2 years ago. Okay enough venting, just thought you'd like to know.

    Love and hugs,
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  • Mary-Lou
    Mary-Lou Member Posts: 2,230
    edited August 2007
    Odalys I'm so sorry for your family. I hope all goes well for her. I will hold them in my prayers, along with you.

    I have a picture of me in 1974 I want to share, let me see if I can get it on here.
    image
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2007
    Oh Dearest Odalys, I am just really REALLY sorry that you now have to be on "the other end" of this. What a tremendous rollercoaster our dear Lord is putting your family through. I just said one of many prayers for your entire family. I also just prayed that God would give me the words to offer a little comfort, and the thought that keeps popping in my head is that GOD LOVES YOU. The sermon at church today was about how our faith is a journey. Sometimes your journey is about good times where you have the strength and ability to reach out to others. Other times, your journey is where you need others to reach out to you. The bottom line is that despite what part of the journey, GOD IS WITH YOU and has NOT forgotten you. The title of the sermon was, "Fear not, little flock!" The pastor also said (and I know I asked this question a thousand times during my tx) that even though you feel like a wavering Christian if you feel fear during these times, it is OK. You are no less a Christian, and no less strong.

    You got through your cancer so that you can be here and be strong to carry your baby sister through whatever is to come. You can DO this. You did it once and your sister watched you. She knows she is surrounded by so much love. This is a scary step for everyone's journey, but you guys can DO it. God LOVES you all.
    By the way, how is your friend from work doing?

    ML-how cute are you?!?!? Hee hee-1974? That was the year I was born! You look just as cute then as you do now!

    Kim-so how about it? Want to have a few visitors come see you? How are you feeling lately? I have kept you in my thoughts, prayers and heart.

    Margerie-how is it going with you lately? How is your get skinny quest going? I am so deeply frustrated with myself. The one good thing from my cancer (physically) was that I lost a ton of weight. Now that I have taste buds back, I have gained it all back!!!!!!!! I sold all my fat clothes last summer!!!! EEK.


    We had a fun weekend-we went "home" to Peoria for a visit. It was so much fun to see everyone, and I have to add, stayed in a great hotel! I did Priceline.com and got a normally $125 a night hotel for $68!!! We got some sad news that a girl from church who started chemo the same time as I did (for either Hodgkins or non-Hodgkins Lymphoma) had passed away. That really freaked me out-I know every cancer is different, but she started the same time as I did; why did I make it and she didn't? Why did she have a recurrence and not me? Note to God: not that I am requesting one, thank you. Oh, I am so heartbroken for her family. It was kind of unexpected. The dad hadn't left her side, and she was getting kind of crabby about it, so he said, "Ok, I'll go get a cup of coffee and be back in 10 minutes." When he returned to her room, she had died already. Please pray for them-what a horrifying situation.

    Ok, time to go and unpack. I love you ladies! Love and prayers, Deb
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