SORCE Sorafenib V's Placebo Trial

I am alive said:

Don't want to say " welcome" but....
Hanno,
You are so brave and smart for meeting this monster head on! I'm sorry the side effects are kicking in hard and early, but maybe your body will acclimate and they'll ease up. Anything can happen. I think it's fantastic that you and your daughter took an adventurous trip together, just the two of you, before you began your clinical trial. I want to do that with my girl soon. She was 12 when I was diagnosed, so I know how your heart breaks when you look into your daughter's face. My daughter's 20 now and I'm still here, so keep your chin up and your eyes on the prize. This is a wild ride we're all on. Ups and downs and sharp curves in the road, but the road goes on. Think of us as your traveling companions. Sending you love and good energy, and maybe a few roadmaps too!

fwhitex said:

SORCE Sorafenib V's Placebo Trial

Hello Hanno

I have just come across your thread.

I to had non-met RCC. Diagnosed in December 2010. Radical nephrectomy Feb 4th 2011, I'm based in the UK, so the time scale to react is not so unusual.  Can't fault the NHS for the FREE service and health care I have received though.

Apparently tumour was PT2 Grade 4 (Surgeon said it weighed around 5lbs and about the size of a football, soccer ball for those in the US. Way too much info). By the way I was 46 when diagnosed. No family history, don't drink, don't smoke, overweight etc

I was offered the chance to join SORCE as well, a 'No brainer' as you say. Started in May 2011.

4 Tablets a day, two am- two pm. Loads of side effects but still worth it (Hair loss, upset stomach, sore scalp!, red face, skin problems - about 15 different side effects. Happy to say what they were if requested).

After about nine months I had a one week stop due to side effects. Then started on half dose = 2 tablets once a day. Side effects reduced but still have a few, which I'm happy to cope with, better than the alternative.

I assume you have the same follow up's in your country - 6 monthly CT scan - 6 Monthly Chest xray, 3 monthly blood test and discussion on how I'm doing.

Latest CT scan brought forward by two months due to a few issues with pain, discomfort etc. Hopefully body adjusting to operation two years ago. 

Very happy to compare notes or chat.

Also diagnosed as being diabetic in November last year (2012). Borderline type 2, so far diet controlled. Not good with only one kidney but life goes on and I'm fine with it.

 

Take care

Hi fwhitex. I was wondering if the diabetes was a side effect of the drug? I thought I'd heard some of these drugs can cause increases in blood sugar, but wasn't sure if this drug was one of those.

Wish you both well. Hope this works for you.

I just started the Everolimus trial. The trial you two are on has been closed to new participants. I'm anxious to hear some results from some of these trials.

Todd

fwhitex said:

Hi ToddNobody seems to have

Hi Todd

Nobody seems to have linked the two.

I was a bit surprised as I have my blood checked every three months as part of the trials but I guesss they don't check for diabetes in these tests. I also did have a 'fasting' check four months before being told I am diabetic and this showed no signs of being diabetic ( I kepted getting sweats at all times of the day, which could have been a side effect or a sign of diabetes). Apparently I am 'just' on the level of being diabetic. Some have called this 'borderline' but my diabetic nurse is quite forthright saying 'you either are diabetic or your not diabetic, there is no such thing as borderline diabetic and you are diabetic'. As a say 'forthright'. 

I am quite a big chap and I do like my sweets, which I have greatly reduced, although not completely stopped (although I should - but you need a few treats in life).

 

Apparently I have 'sticky blood'. I was told this over ten years ago, nobody was concerned so neither was I. I beilive this is having a high red cell count, which thickens the blood somewhat.

I have become someone who notices every little twinge or creak and assume things aren't right. I'm sure I'm not the only one who does this.

 

I hope your trail goes well

 

Finlay

Hi Findlay,

I hate to sound like your mother but several things concern me in your post.  You really need to consider getting that "borderline" diabetes under control ASAP.  Consider this:

http://jnci.oxfordjournals.org/content/92/3/192.full

http://www.sciencedaily.com/releases/2010/05/100521102629.htm

You certainly can control this by diet.  However, not by fudging on it.  Pun intended.

Also, have you discussed the possibility of taking the drug Metformin with your oncologist?  Here is an article that gives some background - there are many others:

http://cancerpreventionresearch.aacrjournals.org/content/3/11/1451.full

To add salt (or sugar) on a potential wound, you also need to pay close attention to why thick blood is another threat.  This one goes right to the heart of where (and why) new mets may appear.

Again this can easily be controlled by diet and certain supplements.

You might want to consider reading the book, "Life Over Cancer" by Dr. Keith I. Block to learn more about both of these threats - and several others you may not be paying attention to.

I have been "experimenting" with "proper" diet and certain "appropriate" supplements for some time now.  I take the maximum dosage of Sutent (50mg/day) and, so far, have had no significant side effects from it.  That too can be a benefit of proper diet.

Email me at: n.feldman@videopost.com if you would like a copy of my .pdf guide to what I am doing.  It is presently 45 page long.

-NanoSecond (Neil)

fwhitex said:

Hi Neil
Thanks for your

Hi Neil

Thanks for your concern. I have radically altered my diet, lost weight, do more excercise. My levels are now in the norm, cholestral is down to normal. Blood pressure is in safe area (higher blood pressure is a side effect of the Sorce trial). An ongong lifestyle change that I don't take lightly.

I will have a read of the sources you quoted above.

 

Thanks again

Finlay

Congratulations are definitely in order for taking the bull by the horns, Finlay.  It's always great to hear when someone takes control like that of their own health, which is just what Neil also did.

May I encourage you to dip into the material Neil has mentioned - it will help to consolidate your resolve and increase the excellent improvements you already made for yourself.

Hanno said:

And then there were two...

Hi fwhitex, it´s great to hear from another SORCE participant. You are the only other participant that I have found (or that found me..) who is still on the trial! Others that have contacted me either declined participation, or pulled out for various reasons. Sounds like you also have had a rough go with the Nexavar at times. I am guessing with the time frames you stated that you are on the 3 year treatment arm? I won't know until September this year if I'll receive treatment for 1 or 3 yrs... lately I've been secretly hoping it will only be 1 year... this stuff can be pretty nasty!

Wow your tumor was huge - such a sneaky disease to go undetected isn't it! I remember thinking how on earth could I not know that was in there?! I hope you have recovered well from surgery and that your up and coming scans go well - fingers crossed! Follow up protocol is the same as you - alternating CT/X-ray plus bloods every 3 months. I have my first CT coming up in a week or two. I'm definitely feeling a bit strange about it - anxiety and anticipation all at once I think. My scan will mark 9mths since diagnosis/surgery and 6 months on the trial. Who would have ever thought I'd be counting the months and weeks like I do hahaha. I think I also read that you have become someone who is sensitive to every ache and pain (at least I hope that was you?)... from all my communications across support groups I think this is normal. I think we all have good reasons to be fearful of recurrence or new growth - but it's about how much we let those thoughts bother us I guess. H
ope you are working through these emotions OK.

So, your side effects sound similar to mine - though I never made it to full dose. I've been on half dose since I started and have been pulled off I think 3 times now due to S/E. If I have to come off again for the same problems - I am started back at a quarter dose. I haven't found any research that supports half dose, let alone a quarter dose so I'm hoping that doesn't happen. I'd probably pull the pin. Hands and feet have been my biggest problem. And now half of my hair is gone. Showers are traumatic - just watching the hair wash away I'm hoping it will slow up soon though - my hair is getting pretty thin! Oh my goodness and the sore scalp you mention - so good to hear from someone who understands first hand (though I'm not happy you are going through this too) - my doctors said it was probably just the hand and foot syndrome affecting my scalp also. Just now starting out now on my morning coffee for the day - sitting on the deck overlooking the ocean. Life is good Might hold off on breakfast for another hour or so though - not sure if you are similar but once I eat my first meal for the day - the tummy battle begins hahaha.

All the best fwhitex, keep us posted on your progress!

 

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)