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Staying positive is becoming a feat in itself!

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

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

 

Srashedb
Posts: 482
Joined: Dec 2013

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's picture
Djinnie
Posts: 945
Joined: Apr 2013

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
Posts: 284
Joined: Apr 2014

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's picture
APny
Posts: 1984
Joined: Mar 2014

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!

 

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

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's picture
Djinnie
Posts: 945
Joined: Apr 2013

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

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

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's picture
Djinnie
Posts: 945
Joined: Apr 2013

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

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

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's picture
Djinnie
Posts: 945
Joined: Apr 2013

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

Suekub's picture
Suekub
Posts: 137
Joined: Apr 2013

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's picture
Djinnie
Posts: 945
Joined: Apr 2013

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's picture
Suekub
Posts: 137
Joined: Apr 2013

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's picture
GSRon
Posts: 1304
Joined: Jan 2013

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's picture
brea588
Posts: 240
Joined: Jul 2012

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's picture
Phredswife
Posts: 162
Joined: Apr 2014

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

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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's picture
Billy's Wife
Posts: 52
Joined: Jan 2014

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

Billy's Wife's picture
Billy's Wife
Posts: 52
Joined: Jan 2014

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's picture
Djinnie
Posts: 945
Joined: Apr 2013

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

 

 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

But maybe you can find a young, sexy Frenchman back home? ;)

At least take a few for a test spin and see what you think!

I know it's difficult to stay positive in the face of some of this news, but from your post, I see you're hanging in there pretty damn good under the circumstances. Humor is absolutely the best medicine. Keep laughing.

Wishing you the best and hugs to you.

Todd

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hi Todd, 

Thanks for the kind comments, I appreciate them. I am not so sure about the French men, as they say in the UK they are all mouth and trousers. No! When it comes down to it my old man is not so bad! Lol!

Djinnie x

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

I am sorry to hear that your challenges continue on. But your outlook and humour are soooo terrific! I believe that new doctor of yours still has some tricks up her sleeve! Give this nasty thing a run for its money!! We are all pulling for you!

Glad you enjoyed Italy - even if it was Clooney-free! When I was in Hawaii in 2007, we were sitting outside at Starbuck's and we were watching this couple walk across the parking lot. I remember watching the woman (mainly looking at her outfit) and thought she sounded like a nice lady. Then after they passed, my girlfriend said she thought it sounded like Pierce Brosnan. Turns out it WAS Pierce Brosnan! We joked all through our holiday, wondering when Pierce would be dropping by for cocktails. But, the sad thing is - this shows that I am getting old!!! When I notice a woman's outfit before I notice a hot, handsome actor?!?! Sheesh!

Joking aside....thinking about you lots.

Big Hugs

JoJo

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hi Jojo, 

Thanks for your words of support, I have had my chat with Dr War I will post details later, it went pretty well under the circumstances though.

Pierce Brosnan has a very easily recognised voice hasn't he, like George he has kept his looks, just a little more craggie. I hear George is looking for a property in the South of France now, glad to hear he is getting a little closer. I think he is gorgeous!

 

Djinnie x

twinthings's picture
twinthings
Posts: 409
Joined: Jun 2013

Hi beautiful, so bummed to read this.  But I think what fox said makes perfect sense and you should absolutely hang your hat on it.  You can't help but start showing improvement before long, for your amazing attitude, I believe, will dictate your outcome. 

You are an amazing example of what grace looks like.  I'd be a blubbering idiot in your situtaion but, not you.  Not sure how you do it.  You're a better, stronger woman than I, that's for sure!

Just keep doing what you do best, fighting with all your might.   Sounds like Dr. War is a fighter too, another strong woman.  There's strength in numbers and together you two will beat this.  Not to mention all the prayers said on your behalf.   Mine included.

Hoping and praying you get that encouragement you so desperately need, when you see your onc this week.

xoxo

Sindy 

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hey you, 

I am so glad you are doing well, strong enough to face this lot. Thanks for those lovely comments, you are too kind. I appreciate all of your support and prayers, it is comforting during the more difficult times. The appointment went a little better than I expected, I don't have to see her for a while now thank goodness. It takes around six hours each time four hours of travelling and around two hours for the appointments.

Take good care of yourself:)

 

Djinnie xx

 

Terry T
Posts: 42
Joined: Jun 2014

Hi there - - i am new out here - diagnosed a few weeks ago with ~4cm mid-pole tumor on right kidney - - having it...at least the tumor if not, likely, whole kidney...removed on 30 June...my wife and i are even a hosting a farewell party to my kidney next weekend!

I am sending you positive and supportive vibes and am pulling for you. Very happy for your trip to Italy.  I used to go there for work and once hosted a seminar on "lago di como".  the people there are beautiful..

 

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hi Terry,

A big welcome to the site.  Obviously we would all have preferred to have met, as it were, under better circumstances, but you will get plenty of support. I really appreciate your good wishes. I also wish you all the best with the up and coming op. A farewell party sounds like a great idea to me, shows a good attitude. Take care:)

Djinnie x

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