Staying positive is becoming a feat in itself!

Djinnie
Djinnie Member Posts: 945

Had my scans today, I am somewhat deflated at the results. The tumours have grown since the last scan, the lymph nodes having undergone a marked change; in that they have grown substantially. OMG! this is so tough, it is becoming harder to remain in a positive frame of mind. The good news is that my liver has recovered a little more, although the bilirubin levels have increased again. I am hoping my Oncologist can put a positive spin on this when I see her next week. I could do with a little encouragement!

On the up side I had a great time at Lake Como. It was a wonderful much need break, I managed to feel something akin to my old self. Pushing caution to one side for the week, I ate and drank whatever I felt like, fantastic! I love Italy!  I did try to trade my other half in for a young sexy Italian, sadly there were no takers. Yet another blow;(

 

Djinnie x

 

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Comments

  • Srashedb
    Srashedb Member Posts: 482 Member
    so sorry for continued bad

    so sorry for continued bad news and so glad you enjoyed Lake Cuomo. Reading your bio confuses me; why did they ablate rather than remove the kidney back in 2003?

    i know you are in France; is this your native country or are you American? My thought is that perhaps treatment here is more advanced and if you are American, might be worth checking out.

    Sending you good thoughts and positive energy, Sarah

  • Djinnie
    Djinnie Member Posts: 945
    Srashedb said:

    so sorry for continued bad

    so sorry for continued bad news and so glad you enjoyed Lake Cuomo. Reading your bio confuses me; why did they ablate rather than remove the kidney back in 2003?

    i know you are in France; is this your native country or are you American? My thought is that perhaps treatment here is more advanced and if you are American, might be worth checking out.

    Sending you good thoughts and positive energy, Sarah

    Ablation!

    Hi Sarah,

    I am neither French or American, I come from the UK. I had an ablation on the first tumour because it was small and situated right on the top of the kidney. I saw a specialist at Southwestern Medical Centre in Dallas, he recommended ablation; because the tumour was ideally positioned for that sort of treatment. To be honest it worked pretty well for the first 6/7 years, there were no signs of a reoccurrence. I think that with hindsight, it would have been better to have the kidney removed during the last op. But we all know about hindsight!

    Thanks for your kind thoughts:)

    Djinnie x

  • aamdsi
    aamdsi Member Posts: 284
    Djinnie said:

    Ablation!

    Hi Sarah,

    I am neither French or American, I come from the UK. I had an ablation on the first tumour because it was small and situated right on the top of the kidney. I saw a specialist at Southwestern Medical Centre in Dallas, he recommended ablation; because the tumour was ideally positioned for that sort of treatment. To be honest it worked pretty well for the first 6/7 years, there were no signs of a reoccurrence. I think that with hindsight, it would have been better to have the kidney removed during the last op. But we all know about hindsight!

    Thanks for your kind thoughts:)

    Djinnie x

    so sorry

    For the bad news upon your return 8-(  As all have said before - so glad you had a grand time in Italy!  Even though the "trade" didn't work, I hope you looked around a lot for suitable candidates (winkwink) - remember the looking can be a lot more fun than the taking home.

     

    Do you know what's next?  Or is that what you find out next week?

    Laurie

  • APny
    APny Member Posts: 1,995 Member
    aamdsi said:

    so sorry

    For the bad news upon your return 8-(  As all have said before - so glad you had a grand time in Italy!  Even though the "trade" didn't work, I hope you looked around a lot for suitable candidates (winkwink) - remember the looking can be a lot more fun than the taking home.

     

    Do you know what's next?  Or is that what you find out next week?

    Laurie

    I am so very sorry to hear

    I am so very sorry to hear about the results of your scans. Must be so frustrating for you after all you’ve gone through. But I keep thinking of your doctor’s name and I know she’ll be waging a full-scale war on this. So between that and your own strength I know you’ll come through this. If the Votrient isn’t working reducing the growth maybe something else could? You’re in my thoughts and prayers. Please stay strong!

     

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    Djinnie, no wonder you are so

    Djinnie, no wonder you are so sad today.
    This is difficult news to hear. In fact, it just stinks!

    Again, know that we all will walk along this journey and be here for you, always, in ALL ways we possibly can, ok hon?

    But I AM proud of you for knowing enough to come back here and let us comfort and support you!!

    I agree, you don't know the course of treatment yet, so I'll be praying and hoping along side the others who will also come here to support you.

    Glad you took the time out to get some much needed R&R..wow Lake Como! Did you see George Clooney? But yeah, he's taken now..

    Sending you light and love~

    Hugs my dear,

    Jan

  • Djinnie
    Djinnie Member Posts: 945
    aamdsi said:

    so sorry

    For the bad news upon your return 8-(  As all have said before - so glad you had a grand time in Italy!  Even though the "trade" didn't work, I hope you looked around a lot for suitable candidates (winkwink) - remember the looking can be a lot more fun than the taking home.

     

    Do you know what's next?  Or is that what you find out next week?

    Laurie

    Thanks!

    Thanks Laurie, I know what you mean, some of those Italian men are a sight for sore eyes, lol!. I am not sure where we go from here, there is bound to be a way forward, it's just that the road becomes harder.

    Djinnie x

  • danbren2
    danbren2 Member Posts: 311
    Meaning of Strong? Djinnie!

    Djinnie,

         Such suckey results would rock anyone's world, and shake their confidence. You are just amazing Djinnie, no matter what they try and throw at you, it seems that you still have a way of coping that just amazes me.  If ever I wanted to be like someone, you would be by choice.  Please remember that we are all here for you, and that I am sending, strength, love, and prayers to one of the strongest women I have ever had the pleasure of meeting!

         Oh, and about the younger Italian part of the fun is the chase!

                                        Love and prayers of good health!

                                         Brenda

  • Djinnie
    Djinnie Member Posts: 945
    APny said:

    I am so very sorry to hear

    I am so very sorry to hear about the results of your scans. Must be so frustrating for you after all you’ve gone through. But I keep thinking of your doctor’s name and I know she’ll be waging a full-scale war on this. So between that and your own strength I know you’ll come through this. If the Votrient isn’t working reducing the growth maybe something else could? You’re in my thoughts and prayers. Please stay strong!

     

    New Strategy!

    Thanks Apny, I agree Dr War is bound to have another battle plan up one of her sleeves. I just hope my liver recovery gets a move on, maybe then a higher dose of Votrient may be on offer again. I definitely have to work hard at getting more encouraging results on the next scan.

    Thanks again for your kind thoughts:)

     

    Djinnie x

  • Djinnie
    Djinnie Member Posts: 945
    Jan4you said:

    Djinnie, no wonder you are so

    Djinnie, no wonder you are so sad today.
    This is difficult news to hear. In fact, it just stinks!

    Again, know that we all will walk along this journey and be here for you, always, in ALL ways we possibly can, ok hon?

    But I AM proud of you for knowing enough to come back here and let us comfort and support you!!

    I agree, you don't know the course of treatment yet, so I'll be praying and hoping along side the others who will also come here to support you.

    Glad you took the time out to get some much needed R&R..wow Lake Como! Did you see George Clooney? But yeah, he's taken now..

    Sending you light and love~

    Hugs my dear,

    Jan

    Thanks Jan!

    Thanks for the kind words Jan, I appreciate it. Sadly no, I did not get to see George, I'm a bit miffed because I warned him I was coming. I sailed past his place a few times, but not even a glimpse of him on his oversized balcony:(  I'm over it!

    Djinnie x

  • Suekub
    Suekub Member Posts: 137
    So sorry

    Djinnie

    so sorry to read your news this morning. I certainly know the feeling and the difficulty in staying positive. Hope your doctor has a new and successful plan for you.

    Happy that you were able to forget about it just a little to enjoy your trip to Lake Como.

    Take care and sending you best wishes from Sydney!

    Sue xx

     

     

  • Djinnie
    Djinnie Member Posts: 945
    danbren2 said:

    Meaning of Strong? Djinnie!

    Djinnie,

         Such suckey results would rock anyone's world, and shake their confidence. You are just amazing Djinnie, no matter what they try and throw at you, it seems that you still have a way of coping that just amazes me.  If ever I wanted to be like someone, you would be by choice.  Please remember that we are all here for you, and that I am sending, strength, love, and prayers to one of the strongest women I have ever had the pleasure of meeting!

         Oh, and about the younger Italian part of the fun is the chase!

                                        Love and prayers of good health!

                                         Brenda

    Brenda I am very touched by

    Brenda I am very touched by your words, especially when they come from someone who has shown so much strength and courage throughout. Thanks for your enduring support, it's much appreciated.

    I agree about the fun of the chase, sadly now by the time I caught up, I would have very little breath left for anything else, lol! 

     

    Take care:)

     

    Djinnie x

  • Djinnie
    Djinnie Member Posts: 945
    Suekub said:

    So sorry

    Djinnie

    so sorry to read your news this morning. I certainly know the feeling and the difficulty in staying positive. Hope your doctor has a new and successful plan for you.

    Happy that you were able to forget about it just a little to enjoy your trip to Lake Como.

    Take care and sending you best wishes from Sydney!

    Sue xx

     

     

    Thanks Sue!

    Hey Sue, 

    Thanks for the kind thoughts, I know you have been through this too, it's a tough call. I missed your report, I hope you had good results this time, they certainly serve to fuel the fighting instinct.

    All the best:)

    Djinnie x

  • Suekub
    Suekub Member Posts: 137
    Djinnie said:

    Thanks Sue!

    Hey Sue, 

    Thanks for the kind thoughts, I know you have been through this too, it's a tough call. I missed your report, I hope you had good results this time, they certainly serve to fuel the fighting instinct.

    All the best:)

    Djinnie x

    My results

    Last CT showed 1-2mm increase in a few lesions (the ones they are measuring from baseline) but stability in one. Possible enlarged lymph node in supra clavicular region. Could have been worse I suppose. Continuing on Afinitor but have an appointment on Wednesday with another onc at another major cancer centre in Sydney to find out about another possible trial (phase 1). Not sure what this trial is all about but does not seem to be specifically aimed at RCC. Will report back when I have more information.

    Stay well.

    Sue

     

     

  • GSRon
    GSRon Member Posts: 1,303
    Suekub said:

    My results

    Last CT showed 1-2mm increase in a few lesions (the ones they are measuring from baseline) but stability in one. Possible enlarged lymph node in supra clavicular region. Could have been worse I suppose. Continuing on Afinitor but have an appointment on Wednesday with another onc at another major cancer centre in Sydney to find out about another possible trial (phase 1). Not sure what this trial is all about but does not seem to be specifically aimed at RCC. Will report back when I have more information.

    Stay well.

    Sue

     

     

    Dj... sorry about the news..

    Dj... sorry about the news.. booo.... OK, concentrate... can you feel a tapping on your left shoulder..?  You should.. that is me.. tap tap tap.. I do that to people I care about to distract them from what they are doing at the time... tap tap tap...  Yes.. that is me..!

    OK, so I know the ups and downs of Votrient.. great drug, hard on the body for some..  Perhaps Inlyta is next.. not as good as Votrient (for me), but very Liver friendly...

    Hang in there..!!

     

    Ron - tap tap tap...  Wink

  • brea588
    brea588 Member Posts: 240
    prayers for you

    So glad you had a good trip and enjoyed the food and drink and had fun flirting just a little LOL.  So sorry about your scans.  Will have you in my thoughts and prayers every day.  Love to you my friend

  • Phredswife
    Phredswife Member Posts: 162
    You deserve better news!!

    Hi Djinnie. Glad you got a good break away. Sorry you didn't get to meet up with George.... What a shame!!! It sucks about your scan results. Praying you get some good news soon. You deserve heaps better! 

    Hugs Melissa xoxoSmile

  • Billy's Wife
    Billy's Wife Member Posts: 52
    You are always so positive,

    You are always so positive, even now in your depiction of your visit to Italy! My prayers are going out to you Djinnie.  You are an inspiration to all who come to know you in this battle.

    So please take some positive energy from those who care and relax yourself just a bit.  The good you always wish for others is being sent right back to you!

     

    God Bless,

    Arleen

  • foxhd
    foxhd Member Posts: 3,181 Member

    You deserve better news!!

    Hi Djinnie. Glad you got a good break away. Sorry you didn't get to meet up with George.... What a shame!!! It sucks about your scan results. Praying you get some good news soon. You deserve heaps better! 

    Hugs Melissa xoxoSmile

    I'm hoping

    that the tumors are inflammed from the drug and therefore should appear larger. I was told that at times drugs have been stopped when tumors got inflammed. Now they look for inflammation as an indicator of  the grugs working. So lets hope it is good news. Staying positive can be hard, but, after this is behind you, you'll know that you had a lot to do with it. Because people will tell you so. So hang in there. You have a special ability. And we have to believe that with a good attitude, the better the outcome.

  • Billy's Wife
    Billy's Wife Member Posts: 52
    Djinnie,
    You are always so

    Djinnie,

    You are always so positive, even now, in your depiction of your trip to Italy-finding the upside. You are an inspiration to all who share this battle.  My prayers are being offered for you.

    May all the good wishes you wish for others swing right back to you.  Sit back and soak it in, you've helped so many!

     

    God Bless,

    Arleen

  • Djinnie
    Djinnie Member Posts: 945

    Djinnie,
    You are always so

    Djinnie,

    You are always so positive, even now, in your depiction of your trip to Italy-finding the upside. You are an inspiration to all who share this battle.  My prayers are being offered for you.

    May all the good wishes you wish for others swing right back to you.  Sit back and soak it in, you've helped so many!

     

    God Bless,

    Arleen

    Thanks Everyone!

    Thank you so much! I feel so fortunate to belong to such a wonderful group of people, the support is always second to none!

    Ronnie you are such a love! I am so glad you have let me know though, I had begun to think I was developing a nervous twitch:)

    Fox thanks for that snippit of information, inflamation being a possibility. That's something positive I can hang my hat on for now.

     

    Djinnie x