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WBR.. ... are there any positive results here


Maryanne

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I know so many of you are really concerned about all the problems Bill wrote about the negative effects of the WBR had on his wife after months of post treatment.

I sympathise with Bill and empthise what went on with his wife is devestating. I also read that some of you have love ones who you feel are going through the same thing.

This is very scarey to so many of you. Especially, if you are considering having this treament done.

I am just wondering if there are people out there who went through WBR and after months like Bill's wife are actually doing okay and not having those symptoms?

Maryanne

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I would like to share Alan's story of WBR. When Alan's brain mets were discovered he was reduced to lying perfectly still 24/7. He could not walk, could barley speak, he was throwing up so much he did not eat for 3.5 weeks. :cry:

Alan had a solitary tumor that was crushing his brain stem and had severe edema. Usually a patient would be given Decadron, however, Alan had some of the worst side effects know with this steriod an could not take it. We had 1 option WBR or death in about 2 weeks. :evil:

Within a few days of having WBR Alan's recovery was remarkable. After his 10th treatment he was 100% better and then started 15 treatments to the tumor itself. Alan's recovery was so remarkable that we were able to go on a month long vacation. we traveled all over California and then over Labor day we went to New York City and had the trip of a lifetime. In early Nov we were able to travel to Florida and visit my parents. :D

I am very happy to say that 5 months after WBR Alan is living as normal a life as can be expected with Small cell lung cancer that has spread to his brain. The Dr.'s had 1 primary goal, improve Alan's quality of life for as long as possible. They did!!!

Now I can not say what will happen months down the road, but I will forever be greatful for this time I have had with my husband. :)

I hope our story has shed some positive light on the WBR issue. As with chemo, (which almost killed Alan) every patient is different.

Many prayers to anyone who is facing this difficult decsion, I hope our story helps someone.

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I have to say that even though brain mets took my mother, the WBR did buy her time, and I do not believe it was side effects of the WBR which caused her decline.

Mom had hearing loss and balance problems right after treatment, in addition to the short-term memory problems. However, the hearing and balance problems improved remarkably, and the memory problems also improved. Mom never lost her personality or longer-term memory. She kept her sense of humor.

It was about 6 months after completion of WBR that symptoms began to return - nausea and fatigue mainly. MRI clearly showed regrowth of the original 3 tumors.

Gamma knife did not really improve anything, but there were never any new symptoms. Memory and concentration did not decline. Mom could still play cards when so inclined. She just got weaker and weaker and weaker. She always recognized everyone who visited. My grandmother died of Alzheimer's, so I've seen dementia - my mother definitely did not have dementia of any kind.

SCLC moves so quickly; the most likely scenario was that there was a great deal of cancer activity scattered in a way too small to be picked up on MRI. My dad and I have both seen the MRI's - we are no experts, but there sure didn't look like anything else but tumors. No additional cloudiness outside the tunor sites after WBR.

So - nine months from WBR was what we got. Better than the few weeks without it. Mom never would have reunited with her son had we opted out of WBR. We were well aware of the risks, that Mom would probably be incapacitated within 2 years from treatment. But it was the only way to get any time at all.

Sometimes WBR clearly makes sense, despite the risks. But the doctors owe it to patients and families to make the risks clear. I know many doctors are not as upfront as my mother's were.

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My mom had radiation to the brain for her mets to the brain. About a year later is when she had problems. I know if she had not had it done she would not of lived more than 2-3 mos.

I decided when I found out about the cancer and mine HAD NOT mets to the brain NOT to have it done. I was going to wait and if it DID spread there we would deal with it then.

I think modern medicine has given so many people more time BUT I don't think they know the long term effects on those of us who out live the expected 1-2 yrs.

If it happens that mine does mets to the brain I would go with the treatment. God only knows how much time I have and I want to spend what I can here with my family.---BESIDES THAT I DO NOT HAVE GRANDBABIES YET!!!! I really want to be a Grandma before I go on!! 8)

Cindy

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I HAD PCI IN NOV.2004 AND OTHER THAN A LITTLE SHORT TERM MEMORY LOSS AND FATIGUE....NO PROBLEMS.....AND EITHER OR BOTH THOSE THINGS COULD HAVE BEEN DUE TO CHEMO OR AGING!!

WHEN TUMORS ENDED UP IN MY BRAIN IN AUGUST, I HAD THE SAME DOSE OF RAD AS THEY GAVE ME FOR PCI....ALL I COULD HAVE. AGAIN......NO PROBLEMS

BRAIN TUMORS (NEW ONES)ARE BACK AGAIN....AND I'M TAKING TEMODAR.....(AN ORAL CHEMO) & DECADRON AND DILANTIN. TOLERATING IT ALL WELL.

Edited to say:You heard me right....this time I'm tolerating the oral decadron. WAS on 16 mg daily.....now cut to 12 mg.

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Did a little looking on the net and found these links to another cancer support site. The folks are sharing info specifically about brain mets and WBR.

Many different experiences, as you'd expect. I found them interesting.

Leslie

http://www.cancercompass.com/message-bo ... 2854,0.htm

http://www.cancercompass.com/message-bo ... 1750,0.htm

Here's one for some good general info about brain mets and treatment options.

http://virtualtrials.com/brainmets.cfm

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I had WBR for 6 very small brain mets in October of 2004. 1 year and 2 months later, I seem to be doing fine in that area. Still have a little trouble with the memory, but that could just be "me", I always had a little trouble in that area.

I think everyone is different, like we continue to say with this disease.

TAnn

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This issue has had me very concerned. i have been second guessing myself about not seeking a second opinion re: WBR for my dad. I spoke with a friend who is a neurologist about the leucoencelphy/WBR connection and he said is is very rare, correlated with vascular diseases due to decreased blood flow and seen with high doses of rad. He related three positive cases where he knew of folks who have lived 10 years past the treatment. I know of two folks who had WBR 5 years ago and are still amongst the living.

I know that it is important to educate ourselves as much as possible about this scourage and its treatments.

But I have concluded that worrying about this is useless. As Don Wood has been know to say (wink to RY) Why borrow trouble?

Much love,

Eppie

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I will also add that my mom's neurosurgeon told my mom that he had a patient who was worse off than her, but he performed surgery to remove her dead brain tissue (the necrosis) and the patient went back to work 9 months later.

Now, maybe that is true, but I am having a very hard time finding any sound examples of this surgery, but maybe. Also, maybe the Doc just needs extra Christmas money. Gosh I am cynical!!!

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When my mom was first diagnosed with LC in 1992 it was a day of tests, and in the mean time she lost consciousness due to the swelling in the brain from mets.The docs said she had a couple hours to live and we called the priest. She made it thru the night and started wbr the next day. there were effects like forgetfulness and paralysis which went away. 9 months later she was there when my daughter her 1st grandchild was born. She lived another 18 months after that. Although I am still so sad about her death I DO believe the wbr gave us a gift of 3 yrs and for that I am ever so grateful.

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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 (whole brain radiation is once and done, cannot be used again). UCLA is equipped with X-knife and Novalis to treat tumors of all sizes and shapes. For patients with a large number of small brain metastases (more than 5), they offer whole brain radiotherapy.

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

As reported in MD Anderson's OncoLog, in the past the only treatment for multiple metastases was whole brain radiation, which on its own had little effect on survival. There are now a variety of effective treatment modalities for people who have fewer than four tumors. Dr. Jeffrey Weinberg at the Department of Neurosurgery at MD Anderson has said "with a small, finite number of tumors, it may be better to treat the individual brain tumors themselves rather than the whole brain." Anderson is equipped with Linac Linear Accelerator. The critical idea is to focally treat all tumors.

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

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. Patients underwent Gamma-Knife radiosurgery and the results indicate that treating four or more brain tumors with radiosurgery is safe and effective and translates into a survival benefit for patients.

http://newsbureau.upmc.com/UPCI/GammaKnifeStudy2005.htm

An editorial by Drs. Arlan Pinzer Mintz and J. Gregory Cairncross (JAMA 1998;280:1527-1529) 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 (of course there are always exceptions to the rule). 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.

Of course, surgical excision is the gold standard of treatment for surgically accessible lesions. Many studies in the medical literature clearly demonstrate the efficacy and superiority of surgical resection followed by radiation over radiation therapy as a first-line treatment for metastatic brain tumors. Doctors at UCLA and MD Anderson say that even for patients with up to four metastases, surgical excision of all intracranial disease has been shown to provide the long survival with good quality of life, and has the same prognosis as someone who has only one brain tumor.

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This issue has had me very concerned. i have been second guessing myself about not seeking a second opinion re: WBR for my dad. I spoke with a friend who is a neurologist about the leucoencelphy/WBR connection and he said is is very rare, correlated with vascular diseases due to decreased blood flow and seen with high doses of rad. He related three positive cases where he knew of folks who have lived 10 years past the treatment. I know of two folks who had WBR 5 years ago and are still amongst the living.

I know that it is important to educate ourselves as much as possible about this scourage and its treatments.

But I have concluded that worrying about this is useless. As Don Wood has been know to say (wink to RY) Why borrow trouble?

Much love,

Eppie

Eppie :

I think that your doctor is incorrectly grouping together all levels of damage and severity of symptoms pertaining to postradiation leukoencephalopathy as if it's one all-or-nothing syndrome. Most of us discussing this condition in these WBR threads have been victimized by a demyelination of nerve fibers in the white matter of the brain. Usually an asymptomatic condition until some sort of a critical threshold of myelin deterioration is reached ( hence the prolonged delay in onset from ~ 6 months to 2 yrs. or more ) then symptoms start surfacing. Many of us, including my wife, are experiencing symptoms explainable by deterioration in nerve conductivity. No clinical evidence of any vascular involvement. My sources tell me that my wife's currrent condition is very common. There will always be variables that will influence severity from one patient to the next. This doesn't mean that vascular damage and symptoms aren't part of the bigger picture if the condition worsens. I'm already worrying about that myself and some people are posting post-WBR symptoms that clearly suggest vascular imvolvement. But, based on my knowledge of the condition, it can hardly be called rare. In fact, patients over age 50 have an ~ 80% chance of developing the condition. And, GDPawel has given us a detailed, full-spectrum overview of this condition and it's tx options. Whether the tx is worth the risk and effective or not is an entirely separate issue. As for me, my focus has been dealing with the sudden onset of my wife's neurological symptoms after such a long asymptomatic period. And, other than watching symptoms and monitoring brain MRIs nobody can tell me how to even quantify her condition and where it's headed good or bad.

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Bill,

I think we are all aware of your wife's condition and what gdpawel wrote. You posted that in your thread. I really am sorry for what you are going through. Sincerely I really mean it.

This thread is for people who has had positive results from WBR with none of the problems that your wife has experience.

I don't know if 80% of people over 50 developes that condition. It is hard for me to believe that this happens so often. Why in the world would they keep offering it it if the results would be what happened to your wife?

You have scared many people out here and I am just trying to see if there are people who did not have your wife's results. That is why I posted this thread.

Maryanne

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Here is another place to get info:

www.abta.com American Brain Tumor Assn.

My thought is that so many of us are living past the 1-2 year mark and the effects of WBR cannot be determined. Myself I had Gamma Knife but only because my rad onc sent me to nuero clinic for evaluation. I wish more people would get that option. I was told by my doctor what the effects of WBR could be and what could happen. Was not a pretty picture. Gamma Knife worked for me.

God Bless

Don :wink:

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  • 2 weeks later...

My wonderful husband had good results with WBR and, while he had some minor issues with cognitive problems, he did not start having anything troubling until almost the 2-year mark. Without it, he wouldn't have lived 6 months. In fact, he worked full time and rode his motorcycle for more than 18 months after WBR and stereotactic radiosurgery using the machine (technique) called Novalis.

I, too, believe that patients should be told all the possible problems that can develop with WBR. Just like when you have surgery, most surgeons tell you the worst that can happen, which is usually rare, but quite horrible. Most of the time, most of us, still elect to have the surgery to fix the problem. The fact is that we live in a real world and things don't go the way we think they should, and not all doctors or radiologists are going to do what we think they should do.

In any case, I hold my original opinion on this subject and will state it in stronger words. I think that someone would have to be from another planet to not know that ANY radiation to ANY part of the body could cause serious damage - whether you are told in advance or not.

I think Bill made it very clear that he and his lovely wife weren't aware of this particular potential danger, but even if they had known it was a "rare" side effect, they probably still would have had the WBR. That doesn't make Bill any less devastasted with his wive's condition, of course. There is nothing about this disease that isn't devastating. Getting it, living with it and treating it are all devastating. It scares the crap out of us, the treatments make the patients sick, fatigued, sore and irritable. In our case, the treatment killed my husband. We weren't told that his particular chemotherapy treatment could kill him, and we weren't told that any of the previous chemotherapy treatments could kill him, but common sense tells us that it's all risky. These treatments are designed to kill cells. We either decide to take the risk, hoping that the potentially deadly treatments will work, or we decide to not take the treatments and let the disease take its deadly course.

If Don could talk to you all right now, he would say that all the sickness, side effects, neuropathy, fatigue and treatments were with the risk to him. They gave him two years (minus two days) of living.

Love,

Peggy

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<>>

I guess we were from another planet then... :cry::oops:

Looking back, I think we were just so happy that the surgery to remove the solitary brain met had been successful. We relied on our doctors to tell us the good, the bad and the ugly. We didn't question the radiation oncologist b/c somehow "he knew best." I was in such emotional shock after his diagnosis that I just sat in the waiting room and cried and cried prior to his first appointment. I knew next to nothing about chemo and radiation prior to my dad's diagnosis. I actually had to look up the terms figure out the differences. That sounds so bizzare now but it is true. Things happened so fast. I vaguely knew chemo was through an IV... probably through TV disease of the week movies.

My dad was the first person I knew with cancer. I knew nothing about staging, primary vs. secondary, mets, treatments, etc. I spent hours pouring over the types of LC and all about the stages.. but precious little on radiation. But now I know.......

Sundrop

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Dear Sundrop,

I am so sorry. I didn't mean to upset you. I certainly wouldn't ever say anything to intentionally hurt anyone. You don't have a profile, so I went back and read a couple of your posts.

I guess I was wrong if there truly are people that don't know the risks of cancer treatments. I've just been exposed to this all my life. When I was a very little girl, my grandmother died from breast cancer, and we have had family and friends throughout my life with cancer of different kinds. It never occurred to me that there might really be somebody who didn't know the risks involved. In today's world, the risks have been greatly reduced and the successes are amazing, particularly with breast cancer because there has been so much research and funding, but the risks do still exist.

I am so very, very sorry you lost your dad to this disgusting disease. I'm going to make a big guess that you are a fairly young person. My son is 28 years old and is having a terrible time with coping with his grief for the loss of his dad. I know first hand how devastating this can be for the children when they lose their parents, not just because of witnessing my son's sadness, but having lost both of my parents as well. You didn't need to hear someone tell you that you were from another planet. You're not from another planet - you just didn't know.

Again, I apologize if I offended you, and pray for healing for you and your family.

Love,

Peggy

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Peggy,

You didn't upset, hurt or offend me. Please, there isn't a need to apologize. I guess I just feel bad because I have such terrible guilt. Maybe I really was on another planet. My parents relied on me to research my dad's illness. I feel I let him down & I will have to live with this guilt for a long time if not forever. I do not know how I could have missed such important information (risks of radiation and chemo). Was I in denial? Did I rely too much on the medical community for info? I don't know. Perhaps we were just so focused on the treatment plan & so hoping for a cure that we didn't realize what could happen? I just know my dad got cancer and I've never experienced cancer before. Never walked on the cancer ward, never really knew what an radiation oncologist did, never knew about hospice, risks, or any of the things we all here know all too well. The one thing I learned was just how small my world was..

No, I don't have a profile. Since you guessed, I will say I am 41 years old. I've been lurker only for what seems like a long time. My dad died this past April. I've never posted until this whole brain radiation thread started.. maybe one day I'll be more active.. but until then.. I've followed your story.. and I'm oh so sorry. I'm sorry for all of us and what we've had to endure. :cry::cry:

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Dear Sundrop,

Please do not punish yourself with guilt. Before your dad had cancer there was no need for you to know about it. I am a stage 3A survivor. I am 57 years old. I have a masters degree in education. There was so much that I did not know, had never heard of, and I had lung cancer. I listened to people and many times they had conflicting opinions about what I should do, as did my doctors at one point. To me a stage was for a play, mets were a baseball team. I had heard of chemo, but had no idea how it worked or even how it was administered, same thing for radiation. Never saw a CT machine or Pet scan machine before. Never heard of them. You did the best you knew to do. Be gentle with yourself please.

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