Evero;imus clinical trial

garym

Texas_wedge said:

Everolimus trial
I think what you were remembering, sunlover, was on MedlinePlus, under the ominous heading "Important Notice"

http://www.nlm.nih.gov/medlineplus/druginfo/meds/a609032.html#special-dietary

There's no doubt it's powerful stuff and I've read elsewhere about washing it off your skin in the event of exposure as a result of a broken or crushed tablet or in laboratories etc. or if involved in fire-fighting when there might be a risk of inhalation etc.

On a hobby horse of mine about interactions, I note the warning not to have grapefruit or grapefruit juice, or St. John's Wort, if on everolimus.

I'm still convinced that you made the right decision and also that Wayne's analysis was sensible on the data he had available.

I'm just a little disquieted that some aspects evidently weren't made clear to him and wonder whether the information supplied was edited down. Usually the accompanying warnings with medications err on the side of alarmism (doubtless due to the advice of my brethren in the legal profession) but maybe it's different with powerful toxic agents that someone wants you not to be put off taking!

Fortunately Wayne is doing fine and I must confess that if I were in his shoes I wouldn't mind if I found I'd been on the placebo! He will have the satisfaction, whether on the drug or the placebo, of knowing he's helped further research and he's getting the expert close monitoring he wanted with the guarantee of an early alert if it becomes appropriate, which we all hope it won't.

No wrong decisions...
I believe that the decision to do this or that is completely individual and governed by personal make up, experience, and circumstance, there are no wrong answers. I marvel at how different we all are and yet how alike. I find myself self sharing more with my "extended family" here because you understand, I think that's a common feeling among us. This "sharing" of emotions, experiences, research, and decisions is a powerful thing and it keeps us coming back for more.

Just my $0.02,

Gary

sunlover_56

garym said:

No wrong decisions...
I believe that the decision to do this or that is completely individual and governed by personal make up, experience, and circumstance, there are no wrong answers. I marvel at how different we all are and yet how alike. I find myself self sharing more with my "extended family" here because you understand, I think that's a common feeling among us. This "sharing" of emotions, experiences, research, and decisions is a powerful thing and it keeps us coming back for more.

Just my $0.02,

Gary

You are so right Gary. And
You are so right Gary. And thank you Tex. I am back to being quite comfortable with my decision.. I do have a bone scan scheduled for this morning but before I go I am going to go out for breakfast and enjoy some bacon and eggs and hashbrowns!! You all have a wonderful day because that is what I plan on doing :-)

PK_Chicago

Clinical Trial
I was offered the same trial - but then my second pathology report showed my mass was not clear cell - but chromophobic! My second opinion oncologist told me that I shouldn't do the clinical trial seeing that the sub type chromophobic is less aggressive and ha a better prognosis.

I was also surprised by the side effects -

I had my surgery in January and am going for my first set of post surgery scans tomorrow.

We'll see what happens - my advise is a seconf opinion or consultation with another oncologist...

Good Luck!

PK

sunlover_56

PK_Chicago said:

Clinical Trial
I was offered the same trial - but then my second pathology report showed my mass was not clear cell - but chromophobic! My second opinion oncologist told me that I shouldn't do the clinical trial seeing that the sub type chromophobic is less aggressive and ha a better prognosis.

I was also surprised by the side effects -

I had my surgery in January and am going for my first set of post surgery scans tomorrow.

We'll see what happens - my advise is a seconf opinion or consultation with another oncologist...

Good Luck!

PK

PK
Good luck with your first set of scans. My first scan is in August. My oncologist scheduled them for 6 months but my urologist wanted it in 3 months. I like his plan better lol

todd121

PK_Chicago said:

Clinical Trial
I was offered the same trial - but then my second pathology report showed my mass was not clear cell - but chromophobic! My second opinion oncologist told me that I shouldn't do the clinical trial seeing that the sub type chromophobic is less aggressive and ha a better prognosis.

I was also surprised by the side effects -

I had my surgery in January and am going for my first set of post surgery scans tomorrow.

We'll see what happens - my advise is a seconf opinion or consultation with another oncologist...

Good Luck!

PK

Second Pathology Report?

I'm confused. I had thought the classification of these was very objective. Are you saying you had another pathologist look at the same samples and came up with non-clear cell?

How can that happen? Did you ask for another opinion, or do they automatically do a follow-up pathology report using a second pathologist?

What was your original Fuhrman grade, if you don't mind my asking?

Thanks,

Todd

Texas_wedge

todd121 said:

Second Pathology Report?

I'm confused. I had thought the classification of these was very objective. Are you saying you had another pathologist look at the same samples and came up with non-clear cell?

How can that happen? Did you ask for another opinion, or do they automatically do a follow-up pathology report using a second pathologist?

What was your original Fuhrman grade, if you don't mind my asking?

Thanks,

Todd

Pathology reports

The classification isn't that objective Todd.  Opinions not infrequently differ and there can be different pathologies in different parts of the same tumour. 

I have the impression that clear cell is re-classified as non-clear more often than vice versa.

Incidentally, Fuhrman grading may well be phased out in due course and it isn't valid for chromophobe pathology or, if I remember correctly, for pRCC either.