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NED But Paid A Huge Price To WBR


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Hyperbaric Oxygen was not an option for my father. It was a full-time job just to get him out of bed, dressed, in the wheelchair and to the car just to go to the doctor. CT Scans of the brain (that showed no more brain mets) in a 3 month period showed increased damage of the white material in the brain.. in other words the radiation necrosis just kept getting worse. He declined almost weekly..from balance problems..he forgot how to use a TV clicker.. to occasional falls.. to falling almost daily.. to forgetting how to walk down stairs.. to a walker.. to the wheelchair.. to the bed.. to be unable to move IN or OUT of the bed without assistance (bedsores!) ... or able to even brush his own teeth, forgot how to read or write. At the same time he had memory loss and confusion that kept getting worse. The doctors called that part "radiation induced dementia." This all happened in a 4 month period.

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Bill, I am so sorry for your wife's situation. I also had brain mets but my rad doc sent me to neuro doc who said no to PCI and WBR. He game me the gamma knife and now they cant even find where the cancer was. I have minor short term memory but that is all. I will never understand why PCI and WBR are still used as first option. I hope that God will give you all the strength and faith needed to overvome this situation.


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Thanks to ALL of you for the kind words, suggestions, etc. I feel for the others reporting similar outcomes. I am sickened to my stomach to report that my wife's condition has further deteriorated. Nothing really new RE: neuromuscular, such as related to walking and falling, etc., but mentally she is in bad shape. I'm shocked at the rapidity of this decline. I can't care for her much longer if this decline doesn't stabilize soon. I'm writing tonight mainly because I finally received a phone call from my wife's rad onc. Here's some FWIW snippits of that conversation that I'm passing on to you just in case that something said can help someone else. Keep in mind that he was " got-caught " angry and very defensive throughout the entire conversation.

He states that, simply put, WBR damages / kills healthy brain tissue. It's unavoidable. There are numerous patient-specific factors ( age being a big one ) and procedure variables that can influence the degree of damage. But, damage to healthy brain tissue to some degree is a 100% certainty with WBR. I stated in an earlier post that onset of postradiation leukoencephalopathy is delayed, ~ 6 months to ~ 2 years. He basically agreed with that but stated that onset can be even longer than 2 years. In my wife's case onset of symptoms appeared ~ 14 - 15 months post-WBR. He also stated that it's not uncommon for a radiologist reading a brain MRI to not report subtle white matter changes suggestive of leukoencephalopathy unless the RX was ordered by a rad onc and / or ordered as a " status post radiation therapy " report. ( He mentioned that dx of this condition is much more accurate with MRI than CT ). Additonally, he states that this condition is more common than most realize because of the delayed onset of the condition. Many times a WBR patient will have some degree of postradiation leukoencephalopathy but dies before this condition becomes evident enough to become a dominant issue. As far as why he chose to administer WBR to my wife, the only half-assed answer that I got from him was that she had too many brain tumors to treat it any other way.

I feel ill. Sorry, gotta go !

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My suggestion is to get a referral to a neuropsychologist. There is work being done on the effects of CANCER on the brain, not as in brain mets, but as in what cancer ANYWHERE in the body can do to the brain. When I saw the neuropsychologist, he informed me that ANY tumor in the body is a mini-toxic waste dump and the brain takes the hardest hit - whether the cancer is in the brain or not.

There IS therapy to help with white matter issues, white matter damage can be worked with. Shortcuts can be found for the brain to work again. Sure, maybe not as it did at one time, but still to FUNCTION enough for a "normal" life.

I did NOT have WBR, gamma knife, nor any treatment to my brain, but I DID sustain white matter damage. My GP sent me to the neuropsychologist for a consult. Some of my symptoms were getting lost while driving - and I mean getting lost on the way to work, a "habit" of driving, not a map and new directions; not knowing how to answer the telephone - I'm a secretary, I have been answering the phone for YEARS; losing my train of thought mid-sentence and sometimes mid-word; not being able to speak because I couldn't put together words; not remembering why I went into the kitchen, getting back to my recliner, looking at the kitchen and wondering who left all the cupboards open (me).... I understand that Mrs. Bill has it way worse than that, but if there are ways to work the brain into relearning things, she may benefit. I don't think a visit to a neuropsychologist could hurt her...

Good luck to you both, Bill.

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I have absolutely NOTHING to add about this subject...I know nothing about it. I did, however, just want to convey my sincere sympathy to you on how this matter was handled. This LC is a very scary and complicated issue.

Thank you for taking time to share your experience with us - hopefully allowing us to avoid the same outcome as your dear wife. I will certainly be praying for her and you too, dear man.


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Dear Bill,

I'm going to give you a little different spin on this, and it might not be a popular response.

As you know from our PMs, I care very much about you and your wife, and I am so, so sorry she is having these horrible complications. And, I'm sorry too that you are having to experience watching this happen.

My feeling on it is that we were told, and common sense dictates, that getting PCI or WBR is risky. We were also told that damage to the brain could appear 6 mos. to 2 years out. At the time we decided that the the alternative was there would be brain damage eventually from the tumors and probably, death, if they were untreated. I guess you could say it's one of those "damned if you do and damned if you don't" deals.

Don, also, was beginning to show some serious side effects from the WBR - about 20 months post-WBR, but the way we looked at it was that he probably would have been dead and gone long before it happened, and WBR, along with other treatments, gave us two very good years.

Bill, again, I'm really so sorry this has happened, and I know it is incredibly upsetting for you. I, too, had a very, very hard time watching Don lose some of his mental abilities.

Sending you and your beloved wife many hugs and prayers.



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Peggy, It is most fortunate for you and Don that you were told about the risks so you could make informed decisions about treatment.

I was not told of any of the risks involved with Radiation Treatments to the body, but because I ASKED very specific questions about long term effects I was given the information. But it was done so in a very defensive manner. I was actually told that the long term side effects of radiation treatments to my body were not likely to be a big issue because I have Stage IV Lung Cancer, and my chances of surviving were very, very small. And he did mention something along the lines of '...and if you do survive long enough to have delayed side effects of radiation treatments then just remember it bought you more time that you would not have had without radiation treatments...'.

But I agree with most others here, we should be given all the information so we can make an informed decision. Period. And the opportunity to engage in some white matter exercises with the hopes of forging new pathways for the brain to make connections.

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Just speaking for myself, a warning about the general risks associated with radiation and WBR were mentioned. And, I'm certain that additional risk details are buried deep in the pile of paperwork that my wife signed. Realistically speaking, the problem that most of us had is that the rad onc didn't level with us in plain terms up front as to the very high probability and severity associated with WBR and postradiation leukoencephalopathy. I honestly don't know if my wife had any other tx options available to her. We didn't bother to check because WBR was presented as a good and essential choice with an acceptable risk : reward ratio. If WBR was the only tx option, and the risks were properly spelled out, we most likely would have still gone with WBR. BUT, the risk of brain damage with WBR is so high that the rad onc owes it to the patients and caregivers to be up front and honest about it so that they can prepare and plan accordingly. For most of us, this condition suddenly surfaces as a complete surprise, blindside attack.


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Don't mean to sound dumb, what is luekoencephalopathy? I have never heard of this.

Also, I am in Southern Calif too. What hospital is your wife being treated. I am in Riverside County, Corona. I DON'T want to go there. Have you considered Hoag Hospital in Newport Beach? They have a LC Program and also brain cancer treatment. Fella I worked with, his wife was treated for brain cancer there and survived. Just a good place to get a 2nd opinion.

In my prayers.


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P.S. There has been some clinical studies and speculation about Tarceva use in brain cancer and / or brain mets. One piece of good news that I can share with you is, at least in my wife's case, Tarceva IS effective against brain mets ( and therefore, does pass the BBB ). The four brain mets that she had prior to starting Tarceva in 3/3/05 were " completely resolved " on this latest brain MRI. As I stated in my initial post, she is NED head to toe but now has the postradiation leukoencephalopathy to battle. She's currently stabilized but the mental / emotional changes are noticeable to everyone.

Karen335 : RE: your question, just do an on-line search of the term. There's plenty of info.

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Thanks for the heads-up PM Bill. I've posted some of this information on another thread (New Treatment, Medications & Clinical Trials), but I'll post some of it here. Finding information IS extremely difficult about the consequences of radiation and virtually ALL of us find out too late.

An editorial to the Patchell, et al studies by Drs. Arlan Pinzer Mintz and J. Gregory Cairncross described the morbidity associated with whole brain radiation and emphasized the importance of individualized treatment decisions and quality-of-life outcomes. Patients who avoided the neurologic side effects of whole brain radiation had an improvement in survival. There is no survival benefit or prolonged independence in patients who received postoperative whole brain radiation therapy. There may have been some less tumor recurrence but not more long-term survival.

Had fatigue, memory loss and other adverse effects of whole brain radiation been considered, and had quality of life been measured, it might be less clear that whole brain radiation is the right choice for all patients. These patients do not remain functionally independent longer, nor do they live longer than those that have surgery alone, said researchers in a report in an issue of The Journal of the American Medical Association.

Even M.D. Anderson Cancer Center, noted in their OncoLog at the beginning of this year, that whole brain radiation may still be the standard for "four or more" brain tumors, however, there are a variety of effective treatment modalities for people who have fewer than four tumors, and in particular for a solitary brain metastasis.

http://www2.mdanderson.org/depts/oncolo ... -05-1.html

The UCLA Metastatic Brain Tumor Program treats metastatic disease "focally" so as to spare normal brain tissue and function. Focal treatment allows retreatment of local and new recurrences. This treatment delivers a single, large dose of radiation that is precisely targeted to the tumor and causes minimal damage to surrounding brain structures.

http://neurosurgery.ucla.edu/Programs/B ... Intro.html

And very recently, the results of a study at the University of Pittsburgh School of Medicine reported that treating four or more brain tumors in a single radiosurgery session resulted in improved survival compared to whole brain radiation therapy alone. In the study, patients with primary malignancies that had metastasized to the brain underwent Gamma-Knife radiosurgery and the results indicated that treating four or more brain tumors with radiosurgery is safe and effective and translates into a survival benefit for patients.


As for radiation-induced necrosis, it is a serious reaction to radiation treatment. It may result from the death of tumor cells and associated reaction in surrounding normal brain or it may result from the necrosis of normal brain tissue surrounding the previously treated metastatic brain tumor. Such reactions tend to occur more frequently in larger lesions, either primary brain tumors or metastatic tumors.

The diagnosis of radiation-induced necrosis is difficult to confirm. Many patients have a mixture of tumor and radiation necrosis and a biopsy may be necessary to distinguish it. Neither symptoms nor radiographic findings clearly distinguish radiation-induced necrosis from tumor. However, the FDG-PET Scan, PET/CT Scan and T1-SPECT studies are useful in differentiating radiation-induced necrosis from recurrent tumor.

Hyperbaric Oxygen Therapy (HBO) is now a useful therapeutic option for patients with confirmed symptomatic radiation necrosis. Until the new millenium, the only treatment for patients was pentoxifyline or heparin therapy, and it was almost always unsuccessful. The good news about HBO Therapy is, it works for most patients!

The most common condition treated at some Hyperbaric Oxygen Therapy Centers is tissue injury caused by brain radiation therapy for cancer. Wound healing requires oxygen delivery to the injured tissues. Radiation damaged tissue has lost blood supply and is oxygen deprived. Chronic radiation complications result from scarring and narrowing of the blood vessels within the area which has received the treatment. Hyperbaric Oxygen Therapy provides a better healing environment and leads to the growth of new blood vessels in a process called re-vascularization. It also fights infection by direct bacteriocidal effects. Using hyperbaric treatment protocols, numerous patients with chronic radiation injuries can be cured.

Hyperbaric oxygen therapy is administered by delivering 100 percent oxygen at pressures greater than atmospheric (sea level) pressure to a patient in an enclosed chamber. Hyperbaric oxygen acts as a drug, eliciting varying levels of response at different treatment depths, durations and dosages, and has been proven effective as adjunctive therapy for specifically indicated conditions.

Oxygen is a natural gas that is absolutely necessary for life and healing. Purified oxygen is defined as a drug but is the most natural of all drugs. Oxygen under pressure is still the same gas but is more able to penetrate into parts of the body where the arterial flow is hindered, producing ischemia (loss of blood flow) and hypoxia (lack of oxygen). When oxygen under pressure is breathed by a patient in a sealed chamber, it is termed a hyperbaric oxygen treatment (HBOT).

In addition to raising the arterial levels of oxygen 10 to 15 times higher than that produced by normal atmospheric pressure, the pressure exerted within the body can and does exert therapeutic benefits on acute and chronically traumatized and swollen tissus.

Radiation Necrosis and HBO Therapy Resources

http://anesthesia.duhs.duke.edu/divisio ... arics.html



http://www.healthsystem.virginia.edu/in ... cm_hbo.cfm

http://www.oncolink.upenn.edu/treatment ... s=33&id=51

http://www.jacobi-hyperbaric.com/html/r ... baric.html



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For your perusal from NCI.

Leukoencephalopathy syndrome is a disorder that results from structural alterations of cerebral white matter, is characterized by cerebral edema, and can occur in patients of any age. It is the destruction of the myelin sheaths which cover nerve fibers. These sheaths, composed of lipoprotein layers, promote the transmission of a neural impulse along an axon. Cranial irradiation and certain chemotherapy agents, especially those used in high-dose protocols, are causal agents.

The prevalence of toxic leukoencephalopathy is unknown; however, this syndrome has been reported increasingly in the literature in patients who develop neurobehavioral changes following exposure to various toxins. Diagnosis must confirm exposure to a toxin and the presence of neurobehavioral deficits and neuroradiologic abnormalities. In most reported cases, clinical symptoms are reversible after the offending toxin is withdrawn.

Necrotizing Leukoencephalopathy is a form of diffuse white matter injury that can also follow chemotherapy. The chemotherapy drugs that most likely cause it are the vinca alkaloids (vincristine, vindesine and vinblastine), platinum drugs (cicplatinum, carboplatinum), and the taxanes (taxol, taxotere). These drugs have the potential of interfering with nerve function.

Cranial irradiation can also produce Radiation Necrosis, which can be divided into focal necrosis or diffuse white matter injury. Both injuries are believed to result from increased tissue pressure from edema, vascular injury leading to infarction, damage to endothelial cells, and fibrinoid necrosis of small arteries and arterioles. Radiaton Necrosis is coagulative and predominantly affects changes in the white matter and death of brain tissue.

And according to Brookhaven National Labs, it is possible that some patients are especially sensitive to radiation exposure (particularly to those that had utilized one of the platinum drugs). Because of previous platin-type drug treatment, it can lower the central nervous system's resistance to future radiation treatments and make the side effects more pronounced. The necrotic area may also stimulate edema in the surrounding tissue. When necrosis and edema are observed on a CT scan, it is difficult to determine whether necrosis is present or brain tumor recurrence.

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