Bill WBR

[Linus32]

Bill,

I have to say I cannot stop thinking about you and your wife and the WBR problem you are facing.

I am so convinced that WBR is the reason my Mother is so ill now. The weakness, inability to walk, the forgetfullness, ETC. I just want to thank you for bringing this issue to light. Not one of my Mother's doctors have ever mentioned this possibility to me.

Not one of her Doctors ever mentioned the side effects of WBR. Do you feel that it is not mentioned because they feel prognosis is too short for it to matter?

Just wanted you to know you are in my thoughts and prayers.

Edited to ask for an update! That was the whole reason for this post to begin with!

[Bill]

Bill,

I have to say I cannot stop thinking about you and your wife and the WBR problem you are facing.

I am so convinced that WBR is the reason my Mother is so ill now. The weakness, inability to walk, the forgetfullness, ETC. I just want to thank you for bringing this issue to light. Not one of my Mother's doctors have ever mentioned this possibility to me.

Not one of her Doctors ever mentioned the side effects of WBR. Do you feel that it is not mentioned because they feel prognosis is too short for it to matter?

Just wanted you to know you are in my thoughts and prayers.

Edited to ask for an update! That was the whole reason for this post to begin with!

Linus :

I feel for you and the others like mammasbabygirl, and GDPawel et al. that have personally experienced the later stages of this condition. Based on input from other sources, including posts on this message board, I've seen and learned about much more advanced disease than my wife's current condition. I feel fortunate by comparison. The big BUT is not knowing where this thing is headed. Overall, data and opinion about this condition ( postradiation leukoencephalopathy ~ secondary to WBR ) points to further decline with time. My wife spent yesterday afternoon with a friend. This gave me an opportunity to compare notes. Her friend sees less change than I do. Probably not much of a surprise as I'm ultrasensitive to everything now. But, we agree on the following :

Mentally, short-term memory is very poor and she seems " sluggish " in her thinking and actions. Also, and recognizing that personality change is a tough one to call because I know that my wife is miserable and has been depressed for quite awhile, I see a HARDENED, LESS CARING / LESS CONSIDERATE / DULLED attitude about everybody and everything recently. Not like her at all. I do know that personality change is one component in this group of mental changes that usually occur. Her walking ( both with and without her cane ) is not as steady as in the past. She stumbles enough that walking w/o her cane is no longer safe.

Regarding your question about physician attitude and selection of WBR, I have several suspicions but I think that one of the big problems is that the subject isn't addressed early on because of the typically prolonged period of time before onset of L/T symptoms ( and dissipation of S/T symptoms ). The attitude is ' You need WBR now, keep the subject on a S/T level and we'll worry about the longer-term consequences later '.

JMO and best wishes to ALL !

[gpawelski]

Linus

Primary lesions generally "involve invasion" into adjacent brain tissue and at one time, it made sense to have postoperative whole brain radiation in an attempt to destroy any residual cancer cells. But, with metastatic lesions, this has been abandoned at leading cancer centers (like UCLA, MD Anderson, University of Pittsburgh, and others) because of the substantial neurological deficits that resulted, sometimes appearing a considerable time after treatment. Metastatic lesions have relative "lack of invasion" into adjacent brain tissue, making them ideal for radiosurgery or postoperative "focal" radiation.

Yes Linus, in the past, patients who were candidates for whole brain radiation were selected because they were thought to have "limited" survival times of less than 1-2 years (before the effects of radiation necrosis whould show up) and other technology did not exist. 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 to name a few). These treatments are focal and not diffuse. Unlike surgery, few lesions 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.

There "are" better ways of treating cancer patients than what has always been the standard. Cutting-edge techniques can often provide superior results over tried-and-true methods that have been around for many years.

As for suffering the side effects of whole brain radiation, check the threads for HBO Therapy for Radiation Necrosis, and absent a spinal tap, Carcinomatous Meningitis.