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What's the longest anyone's been on Sutent successfully?

TerriNick
Posts: 43
Joined: Mar 2013

Nick is in his 3rd cycle on Sunitinib (Sutent). I was just wondering what it the longest that anyone has been on this drug with it working please? I keep hearing timescales like 8 months or a year and that kind of worries me as it is such a short time.

NanoSecond's picture
NanoSecond
Posts: 547
Joined: Oct 2012

One year is often quoted as an "average" time frame - but beware of statistics.  I have seen posts from a few individuals that went 5 years and beyond.

You might want to read the following excellent essay ("The Media Isn't The Message") by the late Stephen Jay Gould to understand why you need to be skeptical of all these numbers:

http://cancerguide.org/median_not_msg.html

 

todd121
Posts: 612
Joined: Dec 2012

I loved reading that essay. It's very affirming and enlightening.

Todd

todd121
Posts: 612
Joined: Dec 2012

I met a man recently at a kidney cancer support group in Los Angeles that had been on it for I want to say 3 years. It had just stopped working for him and he was going to be switching to votrient.

Todd

NanoSecond's picture
NanoSecond
Posts: 547
Joined: Oct 2012

Hi Todd,

Yes indeed.  I think there are quite a few folks who are managing to get longer than expected lifetimes out of these drugs.  Still, it is important to understand how they are intended to work - and why they are destined to fail at some point.

I know that you understand that all the TKI's and mTOR's work by interferring with a tumor's ability to build their own "private" networks of new blood vessels.  The process is called angiogenesis and so these drugs are called anti-angiogenic agents.  This is also the primary reason that there is little reason to believe that they can work in adjuvant therapy - as each potential tumor has to grow to somewhere between 1-3mm before it "must" start building blood vessels in order to get sufficient nutrients to grow larger and/or faster.

That means there are always micro-tumors circulating in all of our systems.  In fact there is quite a lot of research going on into tracking these little buggers - called "CTC's" - Circulating Tumor Cells.  [Not all of them are capable of causing metastases, BTW].

Anyway, the overall strategy with these drugs is just to prolong life.  They, by definition, cannot "kill" tumor cells directly.  That is why a prognosis of "stability" on mets seen in a given CT or bone scan is wonderful news.  The whole idea is to turn what was once a fatal disease into just a chronic one.  So, when one of these drugs fails (due to the tumor finally building up resistance to it) - you just move on to another one and repeat the process.

[Note: Having said that there is recent research that suggests that mega-doses of Sutent might actually work to kill tumor cells.  However, don't try this at home!  A phase I trial is being organized in the Netherlands to test the hypothesis under doctors close supervision. That's a good place to try this kind of experiment since certain other drugs are legally available over there to deal with any loss of appetite and/or nausea. :)]

Regardless, since the strategy is to make RCC a chronic disease, I spend my time trying how to maximize the lifetime and effectiveness of the drugs I must take - while also minimizing potential side effects.  Although most "mainstream" oncologists still resist considering the benefits of certain dietary and lifestyle changes - the hard science and research that supports this approach is out there for all to read.  I just wish they would.  It would save me a lot of effort and it could benefit their patients.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I seem to remember someone on 8 years.

vdm13
Posts: 35
Joined: Jul 2012

I just started my 9th cycle on Sutent. My oncologist told me in our last visit that officially, Sutent has no "expiration" date and he has a few patients who have been on it for 3 or more years, and one going on his 9th year. For me the results have been off the scale good.

Now for my not mainstream new age advice. Don't think about the Sutent stopping doing its thing. Embrace it as a player in your fight and visualize it choking off those cancer cells. I believe that if you think it will stop working, it will stop working. Just like a year ago I could have decided to die with my Stage 4 Grade 4 diagnosis. Nonsense. I choose to live.

God speed, good luck and keep a positive attitude!

Best,

Vin

TerriNick
Posts: 43
Joined: Mar 2013

Thanks to you all for the upbeat messages. It does help to hear them. Sometimes Nicks Oncologist can be rather depressing with her conservative attitude. She does not believe in anything complementary or 'out there'. She frowned when I said we had him on Vitamin B tablets for the mouth ulcers so you can just imagine telling her about Turmeric etc. And as for visualisation ideas - dont' even go there!

In her defence she is a great oncologist and knows her stuff.

I just wanted to have an idea of what other people had experienced on the drug in time it was successful and so thank you. Now we just all have to keep fingers crossed that they come up with something that will be even more long term or better still cure it.

I know that they were looking at targeting throat cancer tumours with lasers - are there any trials for kidney cancer like that? Not that I am asking for Nick to be part of one, just wondered what types of 'cures' they were trialling.

Thanks again chaps

Terri

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Terri, I really hope Nick is in the best hands but, on what you've just told us, I must say his oncologist doesn't qualify as great in my eyes.  I think for your adjective "conservative" I would read 'fossilised'.

Still, there's a good chance Nick will get a nice long run on Sutent by which time who knows what more we might have in our arsenal?  (And stick with the Vitamin B tabs.)

todd121
Posts: 612
Joined: Dec 2012

My uncle is one that has serious doubts about alternative treatments (visualisation and others). I had the same thoughts about him until he and I had several discussions about these things and I came to understand him better. I found he's first and foremost a scientist and he wants to see studies that show strong causal relationships between treatments and their effects before he buys into them. He's also seen patients for years that were sold "alternative treatments" at a high cost that did nothing for them, and, in some cases made them worse. He felt very sorry for their families who had invested so heavily in "alternative" treatments that cost a lot of money and did nothing for the patient. Because of the nature of the body healing itself, there've been many treatments proposed over the years that looked anecdotally successful that turned out to be proved false. The body is an incredibly complex system.

When I've asked him about some of the alternative treatments, he was actually aware of many and had looked at studies and said the evidence was weak. Or in some cases he had other reasons that were well thought out on why he wouldn't recommend them (or would recomment others instead).

I understand from reading Kenneth Block's book that there is a sort of "triage" being done now, where treatments are recommended based on a combination of how strong the evidence is that it does good, as well as looking at the evidence that it can cause harm and then a decision is made. For example, visualisation. Even though there doesn't seem to be conclusive, strong, causal evidence it heals (it's probably difficult to create a study to show this, because it's hard to measure how successful people are in their visualisation), it's very unlikely to cause any harm as long it is used in addition to other treatments and not instead of other treatments. I found Dr. Block's reasoning to be well thought out in this regard.

My oncologist has also been hesitant to allow me take supplements. I believe the reason is I'm on a drug trial, and he's concerned about the supplements interfering with my blood work in a way that might mess with the results of the trial, or if I have complications it will add extra variables into the equation that will make it complicated to figure out what to do. As a computer scientist who deals in binary possibilities all the time (a single 32-bit variable can have nearly 4.3 billion different values) , I can understand the concern of someone who is dealing with the human body that has literally thousands and thousands of variables, and many of them can have many more than just 2 possibilities. It boggles the mind how complex our bodies are. I can't blame them for wanting to simplify things when they are trying to do experiments and control such a complicated system.

Todd

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