Gioblastoma stage IV help

[Guest guest]

Hi Sandy,

You may or may not want to share what I have copied below from another list

with your friend. I have seen or heard this theme a number of times.

good luck,

would like this posted on public forums.

Melinda Wiman

www.cancure.org

Cancer Cure Foundation

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

> s 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!

>

>

> D. Pawelski

> 500 F Lambda Circle

> Wernersville, Pa. 19565

>