From: "Gregory D. Pawelski (by way of Cancer Cure Foundation
<cure@...>)" <gdpawel@...>
To: <wiman@...>
Sent: Sunday, July 29, 2001 7:12 PM
Subject: Re: Side Effects of Conventional Cancer Treatment



> My wife received postoperative whole brain radiation therapy for a
> single brain metastasis in the Summer of 1998. She began developing
> brain radiation necrosis within 6-10 months after whole brain radiation,
> confirmed by an enhanced MRI in June of 1999.
>
> Her radiation-induced brain necrosis could have been focal or diffuse,
> depending on the modality of treatment. The five fractions of focal
> radiation to the local tumor bed could have resulted in either focal
> necrosis around the tumor bed or metastatic recurrance. In her case she
> developed metastatic recurrance as per Pet Scan of August 2000 showing
> abnormal foci of radiotracer accumulation within the right cerebellar
> hemisphere, right cerebellopontine angle, pons and base of the fourth
> ventricle consistent with new metastatic foci. Her previous tumor
> resection of July 1998, was a 3.5cm necrotic mass in the right
> cerebellar hemisphere. Recurrance of a cerebral metastasis was very
> likely to happen in the future. It did, observed via an enhanced MRI in
> May and August 2000. The Pet Scan in August of that year, confirmed the
> findings.
>
> Her additional twenty fractions of whole brain radiation resulted in
> diffuse necrotic effects. The Pet Scan showed globally decreased
> radiotracer uptake within the brain, bilaterally, consistent with
> involutional change and prior radiation therapy. The MRI's showed the
> ventricles overall were prominent and there was widening of the sulci
> consistent with atropy. There was diffuse, abnormal signal intensity
> within the periventricular white matter, consistent with post radiation
> changes. The signal abnormality within the white matter appeared
> slightly increased compared to her prior studies. An EEG of December
> 1999 showed generalized diffuse slowing that was significant with global
> encephalopathy. It is most commonly seen in toxic metabolic and
> degenerative conditions(my wife received five of six intended treatments
> of the highly neurotoxic chemo cocktails of Taxol and Carboplatin from
> March until July of 1997). There appeared to be a real amount of focal
> right sided slowing which would indicate cortical dysfunction on that
side.
>
> Delayed radiation injuries result in increased tissue pressure from
> edema, vascular injury leading to infarction, damage to endothelial
> cells and fibrinoid necrosis of small arteries and arterioles(my wife
> suffered a stroke to the left basal ganlia area of the brain in January
> 2000, confirmed by an enhanced MRI).
>
> There are a number of radiation treatments for therapy. The whole brain
> radiation treatment my wife received was not the proper treatment for
> her. In her case, tumors greater than 2cm in size should be resected(if
> possible) and depending on the surgeon's success(her's was 99%) focal
> radiation to the local tumor bed is indicated. Her radiation
> oncologist's ideas were different from those of the neurosurgeon and
> gave her twenty fractions of whole brain radiation to a perfectly good
> brain. The radiation oncologist had not told us of any of the
> late-delayed reactions that could happen from whole brain radiation(the
> Pennsylvania State Board of Medicine and the Department of Health are
> presently investigating my wife's situation). We originally approached
> Johns Hopkins for radiotherapy before her surgical resection, but the
> tumor was over 3cm(the limit at that time). But since then I found out
> from other neurosurgeons that up to 5cm could have been done.
>
> Aggressive treatment(like surgical resection and focal radiation to the
> local tumor bed) in patients with limited or no systemic disease can
> yield long-term survival. In such patients, delayed deleterious side
> effects of whole brain radiation therapy are particularly tragic. Within
> 6 months to 2 years patients can develope progressive dementia, ataxia
> and urinary incontinence causing severe disability and in some,
> death(all symtoms my wife developed).
>
> Even the infamous study performed by Dr. Roy Patchell, et al, in the
> early '90's was recognized incorrectly in the radiation oncology
> profession. The study was thought to have been the difference between
> surgical resection of brain tumor alone, vs. surgical resection & whole
> brain radiation. It was not. It was a study of whole brain radiation of
> a brain tumor alone, vs. whole brain radiation & surgical resection.
> The increased success had been the surgery. And they measured "tumor
> recurrance", not "long term survival". Patients experiencing any
> survival were dying from Radiation Necrosis(starting within two years of
> whole brain radiation treatment) and documented as "complications of
> cancer" not "complications of treatment". There was less "tumor
> recurrance" but not more "long term survival". In my wife's case, tumors
> recurred.
>
> Patchell's study, conducted over an eight year period at numerous
> institutions, was given to only 146 eligible patients. It convincingly
> showed that there was no survival benefit or prolonged independence in
> patients who received postoperative whole brain radiation therapy. It
> never mentioned the incidence of dementia, alopecia, nausea, fatigue or
> any other numerous side effects associated with whole brain radiation.
> The most interesting part of his study were the patients who lived the
> longest. Patients in the observation group who avoided neurologic deaths
> had an improvement in survival, justifying the recommendation that whole
> brain radiation therapy is not indicated following surgical resection of
> a single brain metastasis.
>
> Be mindful, there were other grossly medical negligences done to my
> wife, but brain radiation necrosis from whole brain radiation treatment
> was the first and largest precipitant to her death. There is the legal
> requirement that all doctors must give the patients the information
> about informed consent. It is the patient's right to determine what the
> patient wants done to their own body. It is not enough for consent for a
> patient to merely sign their name or say "yes" to proceed. It needs to
> be an "informed" consent which means the patient needs to be told things
> like the nature of the treatment, all of the risks and alternatives,
> including their risks and non-treatment if that's an option.
>
> We were never informed by any doctor involved with my wife's
> chemotherapies or radiation therapies about the possible late-delayed
> side effects of treatment, nor the alternatives to treatment. Ann and I
> were corraled into believing this was the only thing to do, no other
> choice and no mention of the late side effects of treatment.
>
> Because of this the State Board of Medicine, and now the Department of
> Health, began its investigation of my wife's death. I am a spouse who
> saw his soul-mate being slowly tortured to death because of what he did
> not know before, but who has spent two years of sleepless nights finding
> out what the oncologists didn't tell us and what insidious side effects
> they incurred on my wife with their negligent practice. I never realized
> a patient had to be just as knowledgeable or even more knowledgeable
> than the oncologists that treat these patients. Not having the knowledge
> before hand resulted in the death of my wife. I'm very sorry to her for
> letting that happen. She really wanted to live, with me.
>
> I just have to see how the system will fight for my wife and the many
> others who have died, likewise, though I was cautioned by a friend to
> suspect that it is rare for them(the system) to actually conclude by
> taking substantial action. Please get this information out to the
> public! It happens with a lot of different cancers, not just ovarian. So
> many of our conventional adjunct treatments have been available for such
> a relatively short period of time that we have not yet determined all of
> the truely long term effects of some of these treatments.
>
> Thank you for listening. Ann's death will not be in vain!
>
>
> Gregory D. Pawelski
> 500 F Lambda Circle
> Wernersville, Pa. 19565
>