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WOO HOO! Now a 12 year survivor of Stage 4 breast cancer!!!!

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Comments

  • ronniekay
    ronniekay Member Posts: 657
    edited June 2014

    Prayers for you, Woody.  I hope you're able to trust and be at peace with whatever your oncs suggest.  It's hard...stay the course with stable, or try to blast all cells.  You're in my prayers!

  • redwolf8812
    redwolf8812 Member Posts: 580
    edited June 2014

    Woodylb - sounds like a good scan!  Thank You, Lord!

    :-) Penny

  • Woodylb
    Woodylb Member Posts: 935
    edited June 2014

    Thank you soo much both RonnieKay and Penny and i thank our Lord jesus and his holy spirit and our loving mother Mary , for they stood by me from the beginning. The final result is 7tumors left out of 10 all shrank in size , but there is still a metastatic activity on them more so on the left lobe where the largest is located but it is not too high. In all the radiologist told me it is much better than the first CT scan done in december the time og diagnosis. I spoke to my MO in Saudi Arabia he told me that starting a new chemo would be futile now since i am still responsive on the forst one carbo/gemzar and that because of the blood toxicity they had to reduce my last two dozes which would have given me a better result. Their first initial treatment they wanted to give me 8 of carbo. But since my body didn't take it well and they insist on good quality of life, they opted to stop it and initiate with Aromasin alone. They prefer if the onc in my country prefers chemo and if i am well , that he should continue the carbo for two more sessions. And if they keep me on aromasin they they request a pet scan after three month from starting date and we see what happens. They do not approve of the fact that my present mo is thinking of treating me while i have no symptoms or no progression . I happen to agree with him , i prefer to wait three months and scan if it is still the same than aromasin is holding it if it is less than it is working and if more hten he will have to start treating again. The latter makes more sense to me , why get treated for a disease which didn't progress yet. I am letting my heart the and the soundof the holy spirit guide me on this one. And thank you both ladies for your lovely wishes. Best for both of you and may jesus never let go of your hands.

    Denise i hope you are well , i missed you around here....

  • denny123
    denny123 Member Posts: 1,571
    edited June 2014

    Hi Woody.

    I am back-my computer has been crashing and I just got it back yesterday.

    YAY to the loss of 7 mets!

    I agree with staying on whatever you are on (kind of confused on what you are saying), as long as you have improvement.

    We don't go to another chemo unless the previous one fails.

  • Woodylb
    Woodylb Member Posts: 935
    edited June 2014

    Hi Denise,

    I am glad your pc is back lolll i was starting to worry :) you always answer fast. How are you? I pray kadcyla is doing a good job on your mets while leaving you with little SEs.

    I got the final report from the scan, no mets anywhere in the body except the liver, the mets dropped to 7 from 10 with the most active on the left lobe. All dropped in size. The SUVmax on those is 6.7. Fo you know anything about this? 

    I am on aromasin alone right now since may when i finished my carbo+gemzar combo. They didn't give 8 as they wanted  they gave me six carbo and 11 gemzar.because of blood toxicity they stopped at six with carbo. So they put me on aromasin. I am not stable yet but responsive ( whatever that means). 

    When i saw an oncologist in my country he told me , i will not respond to aromasin, and that upset my husband and my son. I am not for affinitor Denise the SEs are horrible. I am well and functioning, no pain and no progression and no symptoms , so i don't see why i should take meds which make me sick.

    My doctors and I decided on aromasin for 3 months then we scan again. Now inhave to stay in my country till xmas to help my son settle for university , so i have to see oncologists to follow me. My MOs and you agree that we do not change treatment if i am not progressing, plus they do not want to tire my body unnecessarily. This one here is making me uncomfortable , i am seeing someone else. What do you think about aromasin? 

    Also when you where on gemzar where you getting it alone or with herceptin? Because i suggested to my mo to get it alone and he thinks gemzar alone will not be effective on me. 

    Any suggestions ?  

  • denny123
    denny123 Member Posts: 1,571
    edited June 2014

    Okay, now I understand.  I had Gemzar with Herceptin for my liver and it worked great.  But now for the mets behind my sternum, it didn't work.

    Your SUV's are very low-I think mine are now 18....that is how rapidly it is growing and how "hot".  You can google that...

    Aromasin didn't work for me-was on it for 3 months.  But for some Stage 4 ladies, it works very well....so it is certainly worth a try!

    If it doesn't work, then you can try something else.  But since your scan showed that Aromasin is working, why not stay on that?

    But I think you should go ahead with Aromasin since there are no SE's (at least I had none).

    You can refuse Affinitor if you don't like the SE's.

  • Woodylb
    Woodylb Member Posts: 935
    edited June 2014

    thank you Denise for your boost of optimism , this is what i thought , herceptin is doing a good job with a lot of her2+ ladies. Even if your SUV is 18 it is still not too high some ladies with me have it 40. So even though it is hot , it is still manageable. As for Aromasin i am on only since 27th of may, it is still too early to tell. I will have another pet end of august and we will see then. Anyhow , my favorite onc said the same thing to me you said and i am comfortable with that. I hope july will put your mind at ease lots of prayers are heading your way. Big hugs. 

  • ronniekay
    ronniekay Member Posts: 657
    edited July 2014

    Woody...Denise....what are SUV's?  Sounds like liver enzymes????   Denise...how did you get to stay on herceptin w/your first diagnosis?  Was it a trial drug then?  With my 2nd & then 3rd (mets) dx, my onc said she knew I was one that she wished she'd been able to keep on  it (all C in my family). 

    Woody...so glad you're tolerating your aromasin & am hopeful scans for you both show good results!

  • denny123
    denny123 Member Posts: 1,571
    edited July 2014

    Woody-Aromasin failed within 3 months, so I knew quickly.  So if you have reduction-that is great.

    Getting nervous with the upcoming PET, but have been there before....

  • denny123
    denny123 Member Posts: 1,571
    edited July 2014

    RonnieKay

    The SUV score is how hot the cancer is, or how active.  I never heard of this before I got these affected lymph nodes.

    I first had Gemzar with Herceptin as a clinical trail for my extensive liver mets.  Don't really know why I was allowed to stay on it, and you weren't.

    Maybe it was because I was an immediate Stage 4????

    A few other ladies in my chemo center were also on it extensively.  But I think that all of them have since passed away.

  • Woodylb
    Woodylb Member Posts: 935
    edited July 2014

    Ronniekay,

    Like you it is the first time i hear about SUV it is meausred only on PET scan like Denise said it measures the the strength in which the cancer is spreading. Apparently mine is low. Till now Aromasin SEs are confined to some hips and lower pain and swelling in the feet. No pain meds are needed, rest to see if it is working on the cancer and thiis I will know at the end of august when a second Pet is done. Thank you for your kind wishes and I hope your Mo will find something which will work for you. Denise God bless her is a special case and I hope she continues to woww us for a long time. Still you never know , you may follow in her foot step:)))) I know you have faith , so god's willing you will make it for many years to come. 

  • Woodylb
    Woodylb Member Posts: 935
    edited July 2014

    Denise I am also waiting for your scans and wishing you will get NED again. I know the waiting kills you but hopefully it will be worth it. I am thinking about you every night since the first of July and my prayers are with you.please let me know the minute they give you the results ThumbsUp. As for me the shrinkage came from carbo+gemzar , the aromasin we will know end of august if there is a progression or not. With ILC you never know. Hopefully i will be of the few who responded on aromasin. Till your scan try to keep busy ( we never succeed) but try. Keep me informed. I have a feeling that your results will be good. How are you feeling generally? Other than the SEs from kadcyla? do you have any disease related pain or anything else? If not than it is most likely that your med may have succeded. Awaiting your results. Be well. 

  • redwolf8812
    redwolf8812 Member Posts: 580
    edited July 2014

    Praying for you, Denny123!

    :-) Penny

  • Woodylb
    Woodylb Member Posts: 935
    edited July 2014

    Hi Denise, 

    I know your scan is today , just wanted you to know i am praying for you, let me know as soon as you find out anything from your doctor. Good luck. ThumbsUp 

  • denny123
    denny123 Member Posts: 1,571
    edited July 2014

    Thanks Woody!

    Please read my reply on the Kadcyla forum.  It is working!  couldn't copy and paste for some reason.

  • Woodylb
    Woodylb Member Posts: 935
    edited July 2014

    Wohoooooo yayyyyyyy! I am so happy for you dear Denise god bless you , i will read the thread but still very happy . Hugs . Thank you , thank you Lord . 

  • redwolf8812
    redwolf8812 Member Posts: 580
    edited July 2014

    Yay!  Thank You, Lord!

    :-) Penny

  • denny123
    denny123 Member Posts: 1,571
    edited July 2014

    Thanks so much!

  • ronniekay
    ronniekay Member Posts: 657
    edited July 2014

    I'm just catching up on my fav spots & am pleased to hear friends are getting good results!  Denny, you're right...mets out if the gate would've guaranteed herceptin...it took me 3.5 years...ugh.  Will continue prayers & hope for good years for all :)

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