Sutent and if mets aren't shrinking - message for poster who....

Hi - sorry about this. I read a post somewhere here but CANNOT find it again, so thought I'd try and answer with a new post.

The poster said they (or their relative) had been on three cycles of Sutent and results were now that some mets had shrunk, some stable and some had incrased in size, and the onc was saying to give up on Sutent and try something else.

I then later read the following from Railwayman, and wondered if that might be an explanation...? (I hope he doesn't mind me excerpting his words as it's in a good cause!)

"I had my CT scan last week and the diagnosis continues to confound me. I have two tumours and they are growing but not solid growth rather some bits are dead other bits have cystic fluids in them and that apparently is what is enlarging them. The prof thinks this is good, loss of density and all that, not sure why but will go along with that.  "

So, maybe, just maybe, it could be that for the original poster who said there was some sign of increase in size in some mets, it could actually be a GOOD sign, as (hopefully!) it is for Railwayman.

 It might be worth checking out, and it's certainly something I shall bear in mind when it's time for my husband's 'Is Sutent working?' CT scan in a couple of months.

Best, Julie

Hi Julie, Railwayman here, dont mind your using my posts at all!

Lin, my wife was so confused by the last visit to the Prof I rang again and spoke to his registrar. It is good news in that what they now believe is happening is that the tumour that has fluid inside is becoming less cancerous as it breaks down and that is a good thing so although the fluid makes it a bigger mass all in all its a lot less aggressive / dense - dont know where that will end up but there you go! The other tumour has the necrosis and that means its being attacked from the outside in - necrosis is dead tissue so although its not smaller in size in places it is dying - again dont know where that one will end up either!  The remainder is stable. I had always understood that there was a % rate of growth that is acceptable and falls within the guidelines of RESIST which is how they test whether sutent is working.  As sutent is the best drug in the bunch so far I think maybe a second opinion would be needed before agreeing to come off it.

From my own experience I always ask for a copy of my results and although its all a bit foreign to me Lins sister is a nurse and so are a lot of our friends nurses and between us we can make some sense of it all -- there is no doubt my tumours have shrunk (initially) then grown in places and they change shape as well - at first we were worried about this but after 19 months now we see how this is a pretty "fluid state" for want of a better word and I am not at all sure that growth necessarily means its bad, but obviously the medical profession are the experts not me.

 Railwayman

RM -Thank you for that! When you mentioned RECIST it reminded me that somewhere along the way I've seen a 'learned journal article' (or possibly just a Note or a Letter) from an onc who was questioning whjether the RECIST metrics could always apply to drug-effectiveness on tumour shrinkage, for, I dimly recall, exactly the reasons you've cited yourself. I will try and track it down for you. I think it was a specialist RCC journal, but can't quite remember what it's called or where I foudn it. It's 'somewhere' in my vast and ever growing list of 'useful RCC sites' in my browser Favourites File!!!! (Memo to self - MUST sort them out sometime, they are all higgledy piggledy and messy and unsearchable!)

Hope the good news continues for you, as it inspires all of us as well!

:)  Julie

Hi Julie, I would be interested in that article if you do locate it however from Lin's research (she does heaps) I know that growth does not necessarily mean ineffectiveness of the drug - its all a bit hit and miss but I for one would not want to come off sutent unless it was really obvious I had to.

Glad my story is an inspiration - dont know where it will lead but for now its the best I can hope for and long may it continue! I often e mail Mary (Mazarole) and her husband Joe is a diamond, he is now on 37.5mg sutent without a break as it helps him with pain and he just keeps going and going.  Its a tragedy that some suffer side effects more than others and some dont get so much help from a drug than others but there is more and more out there to try which at least gives us all options.

RAD 001 is supposed to be pretty good (Everolimus) and I am getting my notes to be assessed for cyberknife so will keep you posted on that one.

Cheers

Railwayman

I'll try and find the ref for you, though as you say, your wife may already have spotted it.

Julie.

Hi - the article about Recist is in the Kidney Cancer Journal for which the pdf address for that issue is

 http://kidneycancerassociation.org/KC_Journal/KCJ_Winter_200

 I'ts about 6 MB to download I think. There is an editorial on Recist by Figlin, plus a later informal article discussing TKI failure which includes more on Recist as a metric for sucess/failure of therapy. It's not massive, but I guess it indicates that 'size isn't everything' when it comes to whether a drug is zapping tumours or not.

There's also a v. dispiriting article about how IL2 taken AFTER Sutent et al is far more toxic, sometimes fatally so, and far less effective. Bummer.

Julie