SORCE Sorafenib V's Placebo Trial

Hanno said:

Some good news...

My 9 month CT yesterday revealed no evidence of metastatic disease. Hoorah!! Whether or not the nexavar has played a part in this we'll probably never know. Either way I am very grateful for this result!

i hope that you are both doing ok and that Finlay, your pain has easing. This week I am feeling amazing... having yet another break due to side effects. It's funny how you don't realise how crap these drugs make you feel unit you're off them! Anyway, I see my oncologist tomorrow so we'll see where we go from here. 

Good luck guys,

Mel

Thrilled the latest reports are all positive! Way to hang in there.  

And so glad you're feeling wonderful. I'm a firm believer we have to feel rotten sometimes to appreciate feeling great. You've had your share of below par days; maybe this will be the start of a above par marathon! Enjoy!

Hanno said:

Thanks fox!!

Docs confirmed today. Boy what a relief! I'm so gunning for everyone else here too  

I have just joined this forum today. There does not appear to be anything here in Australia that offers similar experiences.

My story started in May 2011 when I had an ultrasound for occasional pain in my right side. This was immediately up with a CT scan which revealed a 20cm mass on my right kidney. Radical nephrectomy was done 4 weeks later. No mets which was fabulous and was offered a place on the SORCE trial. I believe I was on the drug for 12 months due to several side affects - hair loss, diarrhea, painful feet and fatigue. A few days after my 12 month on the drug I believe I was then taking placebo as I had immediate cessation of all symptoms. 18 month CT scan a couple of weeks ago has now revealed a lesion on my spine for which I commence radiotherapy this coming Thursday. I'm not sure of my treatment options after completion of radiation and will be discussing with my oncologist soon. Anybody have a similar experience?  

This cancer journey has been the most trying time and I try to stay positive for the sake of my teenage daughter who also lost her father (2 weeks before my diagnosis) as a result of metastatic melanoma. Life seems pretty unfair at the moment so would appreciate any positive stories.

Hanno said:

Hello Suekub..

I must apologise for not replying sooner. I am just now reading your message and wanted to ask how you are travellinG? I am so sorry to hear your family has experienloss such terrible loss in recent years.  I hope you are kicking the spinal lesion in the butt...

I have recently done some posts which have updated my present situation. Regrettably I have been found to have mets to thyroid which necessitated thyroidectomy. Pathology was not what I wanted as there were positive margins. spinal lesion is pretty stable afteradiotherapy. Started Votrient about a month ago at 800mg but liver didn't like it so dose reduced by half and again liver enzymes went up. Now off it again and to be reviewed again next week.

hope you are doing well on the trial, didn't work for me but hopefully you will have better results.

Sue

fwhitex said:

Hi HannoSorry for slow

Hi Hanno

Sorry for slow response. I have been experiencing severe levels of pain and I now have intimate knowledge of every tile in my bathroom. My 6 monthly CT scan was brought forward, by two months, to give myself and my Doctor 'peace of mind'. After waiting 3  and a bit weeks for the results I'm delighted to say that I'm still cancer free, whoopy. They believe the pain, which is sometimes at similar levels as it was 3 weeks after my nephretomy, may be due to my body adjusting to bits missing inside me and the scar left after the operation. I used to get Doctors, nurses and medical students popping into the ward to have a look at my scar. It was somewhat disturbing/funny to hear them say 'wow, thats a big scar' and ' come and have a look at Mr white's scar'. 42cm (16.5 inches) in length, my 5 year old nephew insisted on measuring it (honestly). I guess my plan to be a swimwear model will have to be rethought.

With regard to the side effects - I have never considred leaving the trial. I was even disappointed when they reduced my dose from 4 tablets to 2 tablets a day, although the reduction in side effects was worth it.  On a day to day basis my side efects have reduced/gone and/or become part of my everyday life. I know that everyones reactions are different and it is very difficult comparing what you and I and others are experiencing. ie what I feel as pain with a level of 6, others may feel is level 3 and vis versa.

On a positive note, if I hadn't been on the trial I would still be waiting for a CT scan and would be imagining planning my funeral (pessimistic and over dramatic or what?). As a result of being on the trail it only took 4 weeks for my scan to take place, a major plus point of being on the trail. Also, looking on the bright side, I was already beginning to lose my hair, so now I can blame it all on the drugs - a great excuse.

No doubt you have already had a number of CT scans. I'm not worried in the least about the scan itself. It's all a bit 'James Bond', with the huge syringe type container with the contrast in within eyesight. I even quite like the taste of the drink you have to have over the hour preceeding the scan. The bit I don't look forward to is the needle for the contrast to be injected. Not that I'm scared of needles or the small amount of discomfort of the needle going in but I have terrible veins and it always takes a number of attempts to get the needle in the vein. The last scan was succesful on the third attempt, with 2 people trying at the same time. The worst was 8 attempts by 3 peope individually and then 3 at the same time - both arms, both hands, both wrists and both feet. I always mention that they will have fun/difficulty getting the needle into me. It is all a bit of a laugh (weird I know) and they see it as a challenge to get the needle into me in the least number of attempts. Getiing the needle into me usually adds 15 - 30 minutes to the overall time I am in the scan room. Its much the same getting blood samples as well.

I just realised that the above may make put you off your scan, sorry.
 

My Father had cancer (multiple myloma) at the same time I had mine; well sort of, he was diagnosed two years previously but we overlapped. I think there should be a rule stating that if a family is unfortunate enough to have one member with cancer, then no one else in that family is allowed to get cancer. I'm sorry to say that he passed away over 18 months ago.

My family have been brilliant and this has brought an already close family even closer together. Friends and colleagues have also been really supportive. I am willing (too willing?) to talk to any and all about things. My way of dealing, I guess. Make it all as everyday as possible and not lock it all away in some dark cupboard never to be talked about. I have always had a positive attitude (well most of the time) and this has certainly helped me to get on with things.

I hope your scan goes well and that your side effects and your discomfort levels decrease. Take care and I look forward to hearing good news.

 

Finlay (fwhitex)

 

Hi Finlay,

i hope you are still on this site and healthy? I am also in the uk and on the sorce trial at Addenbrookes in Cambridge. I was diagnosed with kidney cancer on 5/82012 as a 46 year old man and had the affected kidney removed approx 3 weeks later. It was checked and found to be stage 1 and grade 4. Due to the aggressive nature of it I was offered a place on the sorce trial, which I started on 5/11/2012. I am still on it and now on year  2 of 3. Loads of side effects and only a quarter dose as a result. Before I write any more it would be good to communicate with someone going through the same trial. I would be really pleased of you could respond? 

Regards

Ali