Ben’s “amazing” scans…

Discussion Board Forums Good News / What’s Working Ben’s “amazing” scans…

Viewing 15 posts - 1 through 15 (of 31 total)
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  • #50047
    gavin
    Moderator

    Hi Tom,

    Great to hear from you again. And how good it is to see you posting about Ben once again in the good news section! Enjoy planning your vacation schedule, and I know that you both will have some good vacations! Hoping that the good news continues for you both and I am looking forward to reading more from you in this section.

    My best wishes to you and Ben,

    Gavin

    #50046
    maria
    Spectator

    This is so wonderful Tom!! You

    #50045
    nancy246
    Spectator

    Tom and Ben, Love hearing your good news. Keep kicking butt! With that much shrinkage could Ben be a canditate for resection now?
    Keep enjoying life!
    Nancy

    #50042
    marions
    Moderator

    Tom…..we just love the good news section postings. The incredible stories convey much hope to us all. Keep it up. You are quite a team.
    Thanks for asking about the conference in Miami. It is the ASTRO and I am quite late in making a decision re: our attendance. Conference is held from October 2nd to October 6th. Would this fit your schedule?
    Of course anyone else living in the Miami area and would like to become an advocate for medical conferences please, let me know.
    All my best wishes
    Marion

    #50044
    lainy
    Spectator

    YIPEE! Tom, so good to see your smiling face and a big hug and hello to Ben! You ahve made my day with your wonderful news. THe dynamnic duo does it again! BatTOM and RoBEN! I am wishing for you guys to keep the good news coming!

    #50043
    tlsinftl
    Member

    So – here I am again posting in the good news section – something I wasn’t expecting. I feel somewhat guilty for not visiting the board more often – but have had an incredibly busy summer at work and at home. I think of everyone out here often, but admittedly sometimes struggle with getting here as I do find it emotionally difficult.

    I know everyone is aware of the rollercoaster that CC sends us on – and every scan brings a new ride. You will see in my history that my partner Ben was diagnosed about one year ago (last year at this time we were at Mayo Clinic in Rochester, MN). He successfully finished the standard gem/cis protocol in April and outside of fatigue at the end had very few side effects.

    His first two scans after chemo were very positive and our local radiologist could not see anything remaining in his liver. We sent one of the scans to both MD Anderson and Mayo Clinic for a second opinion in July – and both came back and said that the tumor in his liver was still there, but both said it had been reduced by almost 50%. So, while we were disappointed that it wasn’t “gone”, the doctors were still elated that it had reduced by 50% (this shows why it’s always good to get a second opinion on everything).

    Also, late in July our oncologist called and said that Ben’s kidney functions in a blood test showed some deterioration – so he sent us to a kidney specialist who ordered an ultrasound and additional tests. That of course added to our anxiety level.

    Luckily – I am still reporting in the good news section. This past week we had follow-ups with both the kidney doctor and our oncologist after Ben’s new scan on 8/30/11. The Kidney doctor said the ultrasound showed no abnormailities – and his kidney function is within a fairly “normal range”…so he suggested no major changes to diet, etc. The radiologist report once again reported no new growth and not really anything much of interest (we are going to send these scans again to Mayo and MD), but our Oncologist continued to be encouraged and a bit amazed at Ben’s present state.

    So – at this point, one year from diagnosis (with a 6-18 month prognosis), Ben’s CC has been reduced by at least half and is somewhat undetectable (although we know it’s still lurking), he feels absolutely normal – there are no side effects, he goes to the gym, all his hair has returned and we are now planning our fall vacation schedule. Our Oncologist said that it would be at least 2 months until the next scan so we just continue on.

    So, that’s all for now, we just continue to live one day/week/month at a time – as always if anyone at anytime wants to be in touch just click my email link to the left and you will get my email and I promise to respond.

    Tom

    p.s. Marion – if you read this I haven’t forgotten about the conference in Miami in October – but I’ve forgotten the specific conference and dates. If we aren’t traveling on vacation I still plan on helping out so let me know the timing again.

    #50041
    lulu07
    Spectator

    What wonderful news! Thanks so much for posting it means a great deal for all of us to hear good things! Have a terrific summer and keep the good news coming!

    #50040
    Randi
    Spectator

    Fabulous fabulous news!! Enjoy life, enjoy vacation!

    #50039
    kathy
    Member

    That is such Great news!! Enjoy your vacation!!!

    #50038
    nancy246
    Spectator

    Hi Tom and Ben, Love to hear this kind of success story! So glad you are both doing so well. Enjoy your stress free summer! Nancy

    #50037
    gavin
    Moderator

    Hi Tom and Ben,

    Wow! More great news, I love hearing that news!! And thank you so much for sharing this amazing news here. Sounds like you guys will be having a great summer and I am sure that you will both enjoy it! Sure Tom, drop me an email and we will see if we can meet up whilst you are over here, let’s hope so.

    My best wishes to you and Ben,

    Gavin

    #50036
    katja
    Member

    Fantastic news Tom and Ben,

    I’m amazed, hope the doctors are studying Ben and learning from him! So pleased for you both to have a chemo free summer.

    #50035
    marions
    Moderator

    Tom and Ben…….Here we go….another incredible success story. Enjoy, enjoy. Of coure, I expect your next posting to appear right here….at the good news section.
    All my best wishes,
    Marion

    #50034
    lainy
    Spectator

    Tom and Ben…….I said you were the dynamic duo and thank goodness you have proved me right, again! This is incredible news. What can I say? You are one of a few who can render me speechless. Enjoy your summer, enjoy your life, enjoy each other and next time I pray for you to give me more good news!

    #50033
    tlsinftl
    Member

    I’m back – AGAIN! It’s so incredible to be giving another update in this GOOD NEWS section! I’m still lurking around out here but haven’t been posting much I’ve been so busy!

    Just a little reminder – Ben was diagnosed last August 30th with Stage IV Intrahepatic CC – with mets to the lymph nodes and Omentum, which meant he was inoperable. He started chemotherapy in November and finished all eight of his Gem/Cis cycles in April. Mid-way through Chemotherapy treatments a scan was performed and his tumors had shrunk by about 25%.
    Six weeks after his chemo ended – he got another scan and the primary tumor in his liver could not be detected!!! So, that’s where we left things at the end of April – HURRAY!!!

    So, moving right along – we pretty much lived our normal lives over the next 7 weeks until it was time for a new scan….which of course we all know those and the dread that leads up to the waiting of the results.

    Ben had his new scan on June 27th and we received the results yesterday – July 1st and the radiologist report still showed NO signs of the cancer. WOW!!!! Are you kidding me? Obviously we were both elated since we all know what can happen with this cancer.

    Our oncologist said he would now probably wait 2-3 more months before he does another scan but he will see Ben in a month and decide then. So – now it looks like we are going to have a “chemo-free” summer! Ben still feels really good and normal so we are going to enjoy life as best we can until the next dreaded scan.

    So, at this point almost 11 months since diagnosis with inoperable, terminal CC – and given 6-18 months to live, Ben has survived all of his chemo treatments and right now is living proof that it doesn’t all have to go down hill so quickly. We both realize that it is likely to return and the doctor is obviously not saying he is “cured”. But at least for now both of us feel he is in a very different place right now then we were expecting.

    NO pain, NO side effects, NO cancer (at least for now)! We never would have believed it!!! So, there is hope to everyone I think…..who knows maybe a cure will be found while his is stabilized.

    Thank you to this amazing board for the information and support you provide. It’s invaluable and I continue to think of everyone often. I do find it difficult to keep up out here given my schedule – but anyone is free to email me using the email “click” at the left for anything.

    Tom

    p.s. – Gavin – I will send you an email separately…since Ben had such a good outcome I am still planning on coming to Europe on July 5th and will be in Edinburgh on July 10th. Maybe we can get together depending on our schedules and your Mum’s health.

Viewing 15 posts - 1 through 15 (of 31 total)
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