Previous scans

alice124

tacyarts said:

Work
I've owned a restaurant named The Stray Cat Cafe for 17 years now in Moorefield WV. I am putting so much exta work on my wife's shoulders by me being sick, she is a trooper!!

Teamwork
I'm sure she is, but it shows she knows you're worth it. Just keep your head up, your postivity tuned to high, and kick cancer butt! You and your wife sound like a great team that can make it happen.

pjune127

Max Power said:

You are the fortunate few!
Great news, glad to hear it.

I was on PD-1 (MDX-1106) (no Sutent) from May2011 to Jan 2012. No side effects. My notes say results are usually seen after 1st or 2nd scan. Side-effects, if at all, take 1-3mo. I had to leave the trial due to slight progression.

But I was quite content to have 7 months of side-effect free stability!

I'm on sutent now.
May you keep shrinking!
Max

Just curious
Max, was your tumor sample checked for the receptor for PDL? That is a recent addition to the criteria for acceptance into the trial. I just began a trial with 20 mgs/kgs of PDL. Hope I get a durable response, but glad Sutent is working for you. No side effects right now, but just had the infusion yesterday.

alice124

angec said:

I understand. I was on
I understand. I was on heavy pain meds at one point, and the runs are not the culprit.. The constipation is another thing! LOL I guess it might have done good for John to get the radiation, it would probably work quicker on eliminating the bone mets and it would be ideal to not have to take those pain meds for too long. But i guess he has to be the good patient and take what they give him. Does that mean that as long as he is on the trial his treatment regimen cannot change? I wonder if they are aware that others on very similar trials are in fact getting the radiation(like our FOX). Thank you Alice for sharing. xxoo much love to you!

Hi Ange - I don't know for
Hi Ange - I don't know for sure if this will continue to be the only way they treat his pain or not. John doesn't want to do anything to jeopardize his treatments. He is a slave to the details and doesn't want to forego a single infusion or miss a single dose of Votrient if its in his control. Right now, with the controled pain he experiences, he lives pretty normally (minus golf) which is I know is a bigger deal for some more than others.

On the last scan, there was a small reduction in the shoulder met, but also a hairline fracture. The doctor noted it COULD reflect shrinkage and the met pulling away from the bone, thus causing the fracture, but the jury is still out on this. He has his next scan on Wednesday, the 24th with prayers for continued reduction.

I know you're right about long term use of the pain killers, and his doctor has already told him he will need to be weaned from the oxyees when the time comes. The trial itself is a year long, and we're at the five month point now. In my mind, if reduction/stabilization continues, they will not do anything as far as radiation until after the trial. If the MDX stops working, then I see other measures being taken. But that's just guesswork at this juncture. Thanks for sharing your concern; I'm with you.

Love U back!

Texas_wedge

ClaraW said:

stats con?
Sorry, I haven't come across this book. I guess if you'd like to know how to critically appraise a trial, there's better tools (guidelines) out there which are only a couple of pages to read. I rarely read big books nowadays . I've read very little on statistics and know hardly anything about research, thus my understanding in this area is very very superficial.

stats con
Clara, fortunately, for that purpose all I need to do is ask my Wife who was recently in an IT contract designing systems for the UK body (N.I.H.R.) re drug trials. [Also, in an earlier career she published research papers in various medical fields and some original papers in statistics.]

I came across the reference to that particular book in this item that will probably interest you:-

The International Journal of Person Centered Medicine
841 The International Journal of Person Centered Medicine
Volume 1 Issue 4 pp 841-842
LETTER
An unattractive hypothesis – RCTs’ descent to non-science
Clifford G. Miller BSc ARCS
Solicitor, Supreme Court of England & Wales and former Lecturer in Law, Imperial College, London, UK
Correspondence address
Mr. Clifford G. Miller, Burnhill House, 50 Burnhill Road, Beckenham, Kent, BR3 3LA, UK.
E-mail: cgmiller@cliffordmiller.com
Accepted for publication: 14 October 2011
To the Editor

Eyal Shahar’s essay review [1] of James Penston’s remarkable book [2] seems more inspired playful academic provocation than review or essay, expressing dramatic views of impossible validity. The account given of modern biostatistical causation reveals the slide from science into the intellectual confusion and non-science RCTs have created:
“…. the purpose of medical research is to estimate the magnitude of the effect of a causal contrast, for example the probability ratio of a binary outcome …”
But Shahar’s world is simultaneously not probabilistic, but of absolute uncertainty: “We should have no confidence in any type of evidence ….. We should have no confidence at all”. Shahar’s "Causal contrast" is attractive. It seems to make sense, but bypasses in two words the means of establishing causation by the scientific method. This phrase assumes a numeric statistically significant “contrast” is causal rather than a potential correlation requiring further investigation.
The concept of “causal contrast” is a slippery slope from sense into biostatistical non-science. This can be illustrated with an hypothetical RCT where 100% of interventions exhibit a posited treatment effect and 0% of placebo controls. Internal validity is seemingly quite reasonably assumed satisfied (common-sense dictating the likelihood of an awesome magnificent fraud, bias or plain error of the magnitude required is infinitesimal). Scientific method appears satisfied. The RCT demonstrates: (1) strict regularity of outcome in the presence of posited cause; (2) the absence of outcome in its absence and (3) an intervention (experiment) showing the direction of causation is from posited cause to posited effect.
Now travel further down the slope from science. Assume 50% of interventions and 0% of controls are positive. We compromise scientific method, but justify this by assuming a large subgroup which we say surely must on these figures be exhibiting the posited treatment effect. But what of 10% of interventions and 9% of placebo controls exhibiting the posited treatment effect? Our biostatistician says the 1% “causal contrast” is statistically significant. But we have: (1) minimal evidence of regularity; (2) the posited outcome irrespective of presence of posited cause and (3) our intervention is at the highest equivocal in demonstrating any form of causation. This is not science. It is, however, where biostatistics has unthinkingly taken us, as Penston has shown comprehensively [2].
We, the audience of published medical research, are now for the 10% / 9% example well down the slope from science.
An unattractive hypothesis results requiring numerous assumptions similar to these:-
"There is a 'contrast' which is ‘causal’, albeit the method employed is not scientific. An effect of the intervention has been observed in a very small subgroup. This subgroup is susceptible to treatment. The similar number of placebo controls exhibiting the outcome sought is irrelevant, because the 1% difference between intervention and controls is statistically significant. The statistical analysis is valid and reliable. The RCT’s internal validity is sufficiently satisfied. No funding or bias or fraud has affected the results or their analysis.”
As Penston notes:
“Confirming and refuting the results of research is crucial to science …. But … there’s no way of testing the results of any particular large-scale RCT or epidemiological study. Each study … is left hanging in the air, unsupported.”
It gets worse. To identify a rare serious adverse reaction of a frequency of 1:10,000 can require a trial of 200,000 or larger split between controls and interventions. This is not done. But for every 100 who prospectively
Miller Letter
842 The International Journal of Person Centered Medicine
Volume 1 Issue 4 pp 841-842
benefit from the intervention, 9,900 also receive it. And for every 100 benefiting one person (who likely gains no benefit) will suffer a serious unidentified adverse reaction. This is also without taking account of more common adverse reactions whether serious or otherwise.
References
[1] Shahar, E. (2011) Research and medicine: human conjectures at every turn. International Journal of Person Centered Medicine 1 (2), 250-253.
[2] Penston, J. (2010). stats.con: How we’ve been fooled by statistics-based research in medicine. London: The London Press, UK.

Max Power

pjune127 said:

Just curious
Max, was your tumor sample checked for the receptor for PDL? That is a recent addition to the criteria for acceptance into the trial. I just began a trial with 20 mgs/kgs of PDL. Hope I get a durable response, but glad Sutent is working for you. No side effects right now, but just had the infusion yesterday.

don't think it was tested
I'm seeing my onc in 2 days, I'll ask 'im.