Sunday, May 27, 2012

"Weird" paths with my cancer....first appointment with one of the top three cancer hospitals

Hi All,

As you know, I have been visiting the top 3 cancer centers to try and understand three things with my recent diagnosis of stage 4 renal cell carcinoma:
  • How did this recurrence happen so quickly?
  • What treatment should I seek?
  • How do the metals play in this treatment, if at all given they all seemed to appear right after the revision hip surgery?
I met with the first of 3 cancer centers on Friday and will meet with the second one on Tuesday.

The first thing we discussed was the "weird/unusual" occurrences with my case (the resident did the medical history to confirm his understanding of my case):
  • The primary tumor was quite a bit smaller than the secondary tumor which I removed a few weeks ago.
  • The path these tumors took was highly unusual.
  • The rapidity with which these tumors became apparent post revision.
  • No symptoms whatsoever....(same was the case with the hip and the damages done with that....I was completely asymptomatic.)
  • The slow growing nature of these tumors was unusual.  This type of growth occurs in only 10% of the population of renal cell carcinoma.
    • Interesting but the renal oncologist counted the start date from 6 years ago not from the time the tumors reappeared and grew.  (I have to check that out because my team felt they were rapidly growing tumors.  This guy though they weren't  if you count the start date from 6 years ago when the first sign of the disease appeared.)   Who knows?  I have become accustom to the disagreement among physicians.
He knew absolutely nothing about the hip effects here.  Zero.  He had no idea how the treatment he recommended may or may not be affected by the metals.  I didn't pursue it with him given his lack of knowledge in this area.

In any event, he strongly suggested IL2 treatment (interleukin 2) which is the most violent of the chemical approaches in all of cancer.  It apparently has a 5% chance of cure and in this cancer, there is not chance for cure at this stage.  I am very cautious about this approach but if you make it through the regime, you have a better  chance of survival than I have now.

My current life expectancy is 2.6 years based on no treatment from the Sloan Kettering scale.  It moves up to 36-45  months with the standard of care treatment:  Sutent.  The survival rate with that drug is low.

I am hoping that someone can tell me there is no potential to do  additional harm over and above what I have endured with the metals with this IL2.  I will be investigating this more on my own.

The orthopedic surgeons know little about the metal problems.  Surely, the cancer guys don't seem to know anything so the last group of guys I will approach are the biochemists.  Someone has to understand the potential effects of combining the chemicals and the metals.  If my levels were back to normal, I would have minimal concerns.  They are not.  I have some leads of people with whom I can contact.

Tomorrow I will talk about the Research tests for translocations and the metals.  I got those tests back on Thursday nite but haven't had time to publish them.

Interleukin 2 is very harsh treatment and undergoing that with the uncertainty surrounding the metals is not something I am comfortable with.  I don;t know if the other consults will recommend this treatment but we'll see.


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