New Flower update Jan 2013

New Flower
New Flower Member Posts: 4,294
edited January 2013 in Breast Cancer #1

Hello my dear CSN friends

Happy and Healthy New Year to you and you families!

I have promising news I would like to share and to vent a little. You can choose whatever you want to read.

I got PET scan results back and  have discussed steps forward with my oncologist. There is no new disease, Xeloda is working - no FDG uptake.  I still have sclerotic progression within several bony lesions which is typical of reparative new bone formation within treated metastases. Yeah!!
Despite good results My oncologist is still keeping me on Chemo for another 6 months (this part is sucks). I am so tired from Chemo and ready to move from it to a target therapy as cancer is Er+  taking antiestrogen drugs instead of cytotoxic Chemo.We agreed on revisiting our approach within next two months. Therefore, I will continue taking Xeloda for at least two more months. Tomorrow is Day 1 of my week on.

Now I can plan my vacations to Hawaii in May, Nordern California in October. On business probably to Maryland again.   So Pinks watch for me, some day I will come to your town!!!  

My thoughts are with all my pinks who are  in pain and suffering right now. Please never loose hope, your breakthrough is around the corner, your magic drug is the one you have not tried yet or  undergoing clinical trails waiting for FDA approval. 

Now vent about our site. I am still upset about loss of personal messages. Those letters are irreplaceable, I treasure memories from our Pink angels, those letters  hold my story and my life, some information difficult to find.

Honestly, I do not have energy to keep trying to log on 10 times a day. I do need many different fonts, however I need Spellcheck! Being a stage IV survivor who is undergoing chemotherapy and working full-time I  cannot wait until 11 pm to get on. I must rest and take care of my family. I wish CSN administration could do a better job  with this project plus somehow communicate with us.

So if you want to stay in touch  please PM me your contact information and I will be happy to respond. You will let me know when CSN fix this site

Thank you all my CSN sisters and brothers for your continuos support, I could not achieve it without you.

Our Dear Pink Angels  

you have been giving me guidance from Heaven, I miss you so much.

 

Hugs

New Flower 

Comments

  • smalldoggroomer
    smalldoggroomer Member Posts: 1,184
    #2
    So Nice to hear you are doing

    So Nice to hear you are doing well. So happy for you to get to plan your Vacations. Have a marvelous time.. I know what you mean about getting on this site anymore these days. I always have to try multiple times. And them some times I try to post and get bumped off. I don't even know if all my post get on. It is so frustrating. I wish they could get it right. Take care darlin, I hope we all keep trying here it is a nice forum and some day it will work again.

     

    Kay

  • Jean 0609
    Jean 0609 Member Posts: 2,462
    #3
    Happy New Year New Flower!

    I sincerely hope your doctor will let you come off the chemo in 2 months, if that is what you want. 

     

    Enjoy your trip to Hawaii and Northern California when you go!  You definitely deserve relaxing vacations.  Fingers crossed that you will be able to make your business trip to Maryland again.  I will work on getting more pinks to join us this year.  A few already said they would come. 

     

    xoxo,

    Jean

     

  • SIROD
    SIROD Member Posts: 2,194 Member
    #4
    Wonderful News - Share your Frustrations too!

    Dear NewFlower,

    I share your frustration and others on this site.  I am about to give up.  In all the years online, I have never encounter such a problem as this on logging on.  What is CSN problem in not being able to fix this?  I don't care about multi fonts either.  I rather they conscentrate on people being able to log on and find the support they need.  How awful for ladies who are newly diagnose to try to come on and just find blank screens.  If they posted, not being able to read the replies of support.

    CSN should at least be nice enough to inform the groups on what is happening and what they are doing for a solution.  Instead there isn't anything from them since that Greta ask on December 21st.  WHY?

     

    Truly am glad that your chemo is working and I don't blame you to want to switch to a hormonal drug.  I know what my oncologist would be saying, "if it is working, don't touch it, leave it alone".  However, I agree with you 100%

    Your plan trips sound marvelous and planning is part of the fun too.

    Wishing you the best as always,

     

    Doris

  • New Flower
    New Flower Member Posts: 4,294
    #5
    SIROD said:

    Wonderful News - Share your Frustrations too!

    Dear NewFlower,

    I share your frustration and others on this site.  I am about to give up.  In all the years online, I have never encounter such a problem as this on logging on.  What is CSN problem in not being able to fix this?  I don't care about multi fonts either.  I rather they conscentrate on people being able to log on and find the support they need.  How awful for ladies who are newly diagnose to try to come on and just find blank screens.  If they posted, not being able to read the replies of support.

    CSN should at least be nice enough to inform the groups on what is happening and what they are doing for a solution.  Instead there isn't anything from them since that Greta ask on December 21st.  WHY?

     

    Truly am glad that your chemo is working and I don't blame you to want to switch to a hormonal drug.  I know what my oncologist would be saying, "if it is working, don't touch it, leave it alone".  However, I agree with you 100%

    Your plan trips sound marvelous and planning is part of the fun too.

    Wishing you the best as always,

     

    Doris

    Thank you! It is not easy to post

    Kay, Jean and Doris,

    Thank you very much for your support. it takess long time and dedication to post.

    Doris and Kay I hope your next Scans will bring happy news too.

    My heart goes out to all pink survivors who are in treatment and suffering from pain and fatigue. I wish for all who are in remission never face another time around. It is very hard to pick up pieces after cancer, and even harder to live with cancer, however still possible to enjoy life.

    I have not heard from KarLee, Kari's daughter. I pray that Kari is comfortable and free of pain.  

     

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #6
    New Flower said:

    Thank you! It is not easy to post

    Kay, Jean and Doris,

    Thank you very much for your support. it takess long time and dedication to post.

    Doris and Kay I hope your next Scans will bring happy news too.

    My heart goes out to all pink survivors who are in treatment and suffering from pain and fatigue. I wish for all who are in remission never face another time around. It is very hard to pick up pieces after cancer, and even harder to live with cancer, however still possible to enjoy life.

    I have not heard from KarLee, Kari's daughter. I pray that Kari is comfortable and free of pain.  

     

    I am CELEBRATING YOUR GREAT NEWS, Olga!

    CHEMO SUCKS BIG TIME, no question about it!  Olga,  you are a WARRIOR - going thru Chemo, working, traveling, WALKING and living life.  I am so so so PROUD of you dear Sister .Continued Strength, Courage and Perseverance - dear Sister.

    You upcoming trips, and vacations sound wonderful.

    HOPE for a Cure in 2013.

    Vicki Sam 

  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    #7
    Yay!, Olga!

    Am so happy, and relieved, for your good news! Yay!!!

    Kind regards, Susan

  • New Flower
    New Flower Member Posts: 4,294
    #8
    Christmas Girl said:

    Yay!, Olga!

    Am so happy, and relieved, for your good news! Yay!!!

    Kind regards, Susan

    Thank you

    Vicki and Susan

    thank you for celebrating with me.

    very tough week. I am missing Kari

    hugs

  • sea60
    sea60 Member Posts: 2,613
    #9
    HAPPY!

    Olga, I LOVE reading such a positive update (with the exeption of Chemo). But it's GOOD news. You inspire and instill hope to all pink sisters. I'm excited that you will travel...to HAWAII!! If you're ever in Texas (San Antonio) I would love to meet with you. Keep the faith and hope. Thank you for being such a blessing.

    Yes, I DO agree with you. I'm sad that it's getting to be more trouble with this site. What a shame. It's such a wonderful place to gather together.

     

    Sending you hugs and peace!

     

    Sylvia

  • New Flower
    New Flower Member Posts: 4,294
    #10
    sea60 said:

    HAPPY!

    Olga, I LOVE reading such a positive update (with the exeption of Chemo). But it's GOOD news. You inspire and instill hope to all pink sisters. I'm excited that you will travel...to HAWAII!! If you're ever in Texas (San Antonio) I would love to meet with you. Keep the faith and hope. Thank you for being such a blessing.

    Yes, I DO agree with you. I'm sad that it's getting to be more trouble with this site. What a shame. It's such a wonderful place to gather together.

     

    Sending you hugs and peace!

     

    Sylvia

    San Antonio River Walk

    Thank you Sylvia for your kind words. San Antonio is on my list to visit. Some day We will meet for sure.

    Hugs back

    Olga

     

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #11
    YOUR trips sound

    YOUR trips sound great...

     

    Denise

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