About WBR

[Mskim]

It makes me so frusterated to that the side effects of WBR were minimized by moms doctors.

I want to stay as positive as I can here but after my 10 rounds in July of 05 my mom was simply not the same woman. Aside from SEVERE short term memory loss she became very childlike and self indulgent (can't blame her there) She was extrememly confused and had a hard time concentrating on anything.

My mom only took decadron the first few weeks and that certainly made thing worse and when she stopped taking it she became less a little less emotional and argumentative.

She was unable to read and disliked being in a room with more than one or two people because all of the conversation confused and frusterated her. Littel things like being unable to knit because the counting was confusing and all this from and executive at our local Houseing Authority! We were no longer able to discuss financial matters with her and discussing alternative medical treatments was out of the question. Not because she was apposed to it but because it was too much for her to think about. SHe began shaking and jerking and ticking. SHe was no longer able to drive and had to retire 2 years short of full benefits.

On a happy note, in the last month or so I feel that I am getting her back. Her eyes seem more clear and I can see her in there! Her short term memory is still not good but we write lots of notes.

I know that every case is different, which is really an understatement. I have heard of people having WBR and the only side effect was hair loss so I believe my moms side effects were extreme. I just wish we could have been a little more prepared. OF course how do we prepare for any of this?

I am so proud of my mom and grateful she is persuing treatment and enduring everything that comes with it.

If she had know all that would happen I am not sure she would have taken the same path but I am grateful she is. I would rather have her with me, changed but esentially still her, than not have her at all.

Hugs and prayers,

Kim

[BevOK]

WBR ia a stcky wicket, that is for sure! My friend's husband, who is just 52, is basically an Alzeheimer's patient due mostly to WBR. I know that WBR works wonders for many, and that is just amazing, but I do think patients should be told ALL of the risks. My friend was not at all prepared for what she is facing now. Her husband continues to decline although his scans are clear.

I'm so glad you are getting your mom back, though! That has to be a brilliant ray of sunshine after all of these problems.

Kelly

[karen335]

I have tried to tell people about WBR, no one wants to listen. It is SOOOOOOOOOOOOOOO dangerous. Doctors don't tell you EVERYTHING. I speak as a TWO time brain met LC survivor who DECLINED and was ADAMANT about NOT having WBR. I had stereotactic radiation After my surgery. First surgery was 4/2004 and most recent 2/2006. I still CAN function. The radiation Oncologist who tried to get me to have WBR was from City of Hope here in California. It's ALL about the money made. WBR time 10-15 treatments verses 1 Stereotactic treatment. One WBR times $2,000.00 times 10 to 15 =. One Stereotactic Radiation treatment times $3,000.00 times 1 time =. Plus it turns yo into a veggie in 4-24 months. Sometimes in less time. It fries the Whole Brain...

I am NOT a doctor, this is my opinion. PLEASE, PLEASE RESEARCH. Do your HOMEWORK, doctors will tell you ANYTHING> THey call it PROTOCAL. LOL

Enough said, ball is in your court... I want to LIVE!!!

Blessings, Prayers and Hugs,

Karen

[Bill]

There's a stranger in our house .... and it's my wife !

It's very strange getting used to someone dear to you that's undergone a ( far less desirable ) personality change in addition to other mental / emotional changes.

B

[gpawelski]

Karen and Bill

Whatever benefit that may arise from bringing this out in the open will not likely have much effect because clinical investigations are by a culture of organizations which mindlessly continues its attempts to disparage, denigrate and bury long-needed improvements in the "individualized" management of cancer patients. However, the information is there and intellectual curiosity demands its knowledge, to whoever will listen. That's about all one can do.

Radiation can damage the brain's "white matter" by interfering with the growth of an insulating substance called myelin. White matter helps the brain coordinate thoughts and makes signals travel more quickly, without it, patients may process information more slowly, or worse. Radiate globally, and it's much worse. Metastatic lesions have relative lack of invasion into adjacent brain tissue, making them ideal for radiosurgery or postopertive "focal" radiation.

Finding information is extremely difficult about the consequences of whole brain radiation and virtually all of us find out too late. However, there is still a following by a cabal of radiation oncologists that still encourage it in detriment to cancer patients.

Small-cell lung cancers (SCLC) are intrinsically sensitive to chemotherapy. It is one of the very few forms of carcinoma for which chemotherapy has some positive effect on survival. SCLC is also very aggressive, tends to metastasize readily and grow rapidly. Median survival is on the order of 9-10 months, rare patients have long-term remissions (years).

Recurrences are much more difficult to treat. Brain metastases are common, hence the use of prophylactic whole brain radiation. However, patients who are candidates for whole brain radiation are selected because they are thought to have limited survival times of less than 1-2 years, before the effects of radiation necrosis would show up. Radiation-induced necrosis is a serious reaction to radiation treatment. It may result from the death of tumor cells and associated reaction in surrounding normal brain.

Several studies in the '90's convincingly showed there was no survival benefit or prolonged independence in patients who received whole brain radiation therapy. The efficacy of this kind of radiotherapy has not been established. The most interesting part of the studies were the patients who lived the longest. Patients in the observation group who avoided neurologic deaths (avoided WBR) had an improvement in survival, justifying the recommendation that whole brain radiation therapy is not indicated.

Today, many physicians question the use of whole brain radiation in most cases as one-session radiosurgery treatment can be repeated for original tumors or used for additional tumors with little or no side effects from radiation to healthy tissues. There are a number of radiation treatments for therapy: Stereotatic, Gamma-Knife, Cyber-Knife, Brachyradiation and IMRT. Thes treatments are focal and not diffuse, as whole brain radiation is.

Unlike surgery, few lesions that may show up are inaccessible to radiosurgical treatment because of their location in the brain. Also, their generally small size and relative lack of invasion into adjacent brain tissue make brain metastases ideal candidates for radiosurgery. Multiple lesions may be treated as long as they are small.

A report in MD Anderson's OncoLog, on New Perspectives on Brain Metastasis, 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. The critical idea is to focally treat all tumors.

[adela]

Ed got WBR our first doctor did not even talk about gamma knife.He had 5 mets I guess that is 1 over the recommended for gamma knife. I and Ed were so scared we jumped at a chance to do something. It is criminal that doctors will not discuss other types of treatments. We were extremely stupid. The members that get gamma knife for their mets it seems are much better.

Ed can not swallow can not walk and his right hand is all over the place.

[Sundrop1964]

Kim,

Please read my previous posts regarding my dad's experiences with WBR.

Thinking of you,

"Sundrop"

[Bill]

In the interest of a balanced evaluation of WBR risk : reward, I would add the following to those of you considering WBR and who are panicked by the dreadful outcomes that are being reported. Just as some may consider the dreadful outcomes to be somewhat overblown, IMO, WBR's effectiveness is overblown and it is not a cureall tx for brain mets. Reality is that WBR results vary from fantastic to nil. To the best of my recollection ( w/o reviewing her chronology of brain MRIs ) in my wife's case WBR modestly shrunk 2 of 4 identified mets and probably cleared up some " suspect " areas ( spots ). This condition remained static until she started Tarceva. The current dramatic improvement in her brain mets occurred after starting Tarceva in March ' 05. As to why her rad onc chose WBR, he gave the pat answer. Namely, too many mets to treat it any other way.

[trishnmiller]

I ditto everything Karen said. The only way to get individualized care is to be an adament advocate. My husband (stage IV nsclc)had 13 brain tumors and they were all cleared out with Gamma Knife over a year ago. We then turned to other forms of stereotactic radiation (IMRT and cyberknife) for the liver and lung tumors. Today he is cancer free and working a 40 hour week. Doctors do not believe me but his case is fully documented.

Trish

[Don M]

So Kim, I am glad your mom seems to be doing better. I hope it continues.

Don M