Doctors say - Whole Brain Radiation!

[kimblanchard]

We got the results of my latest MRI after the gamma knife procedure that I had done in late May. The oncologoists are now recommending WBR since two new small lesions have been identified. These lesions were not there six weeks earlier at the time of the gamma knife procedure. It is up to me as to whether to have the two lesions treated with the gamma knife as well. WBR is the very demon that I have trying to avoid as if I some control over this beast. We will be meeting with new radiation oncologists Friday of this week and Tuesday of next week.

I want to go into these discussions prepared. I am looking for those questions that you wished you had asked prior to the procedure. I am also looking to hear from those of you that have had this procedure (or your caregivers) to find out what your experience was like during treatment, immediately after treatment, and long term after effects on the quality of your life.

I continue to remain basically asymptomatic (sp?). I continue to work part time and keep up with the activities of my family and 8 year son. In fact, we celebrated his birthday last week with his friends by roller skating and I took the opportunity to use inline skates for the first time. What fun!

Thank you in advance for your thoughts.

[SJAS]

Maureen,

I really can't advise you, but here is my husband's experience (from a previous post).

In Dec., Steve was to have WBR. We literally cancelled sitting in the radiation office for the first tx after having done some extensive research the night before. We demanded to see a Gamma Knife specialist and it seemed Steve would be a good candidate. The Tumor Board required a triple-dose MRI and by then Steve's tumors had disappeared from chemo. So all tx ended, but the controversy did not. His onc. and radiologist both wanted him to do WBR anyway prophylactically. The neurosurgeon totally disagreed and said WBR is too major of a step to take unless absolutely necessary. We finally just had to make the decision and live with the consequences. We refused WBR. Unfortunately, by Feb. Steve had 15 brain mets. He then had to do WBR, but we both still have some concerns about it. His health was terribly impacted by the WBR. He was completely wiped out and is still in a slow recovery. I would DEFINITELY read up on both procedures, and see a Gamma Knife specialist. I have read that some places are using CyberKnife for brain mets too.

However, I am not saying to rush into WBR. It has been extremely hard on Steve and his level of functioning is still much less than before WBR. Hopefully, he will slowly work his way back, but I don't think we expected it to be this hard and long of a journey. When you have 15 lesions, there is no other option, but it sounds like you still could do Gamma Knife again. Guess I'm making your job harder instead of easier . Sorry.

[Terry]

Hi Maureen,

If you want to get yourself prepared, you might want to go to www.irsa.org. This website has a lot of information regarding brain metastatic cancer. You will find articles about the possible side affects of WBR in detail that our doctors never gave to my husband and me. You will also find reports about studies that debate the value of WBR. One study suggests that there is no benefit to WBR, if measured in longevity.

CAUTION: I found it very upsetting reading some of the articles, and I am the caregiver, not the one with cancer. The language doesn’t “sugar coat” anything. Just keep in mind that there are many people in this support group who have had WBR and are doing much better than what is projected in these articles.

My husband had WBR. He has so many symptoms and side-affects right now that there is no way to tell what is related to WBR and what isn’t. What I can say is that before WBR he had horrible headaches and now the headaches are completely gone.

My gut reaction is that as long as it is being offered as an option, go with the gamma knife. Only do WBR as a last resort.

I can be very compulsive about detail. What I would do is go to the search engine of this support group and search for “gamma knife” and “WBR” or “whole brain radiation.” Read the profiles and posts of all the people who have experienced it. How many are “thriving”? How many are just doing OK? How many are really struggling? (Put my husband in the struggling category.) After awhile you will start to get a feel for what is right for you.

I am envious that your doctors are even discussing gamma knife with you. Our doctors never mentioned it. I learned about the procedure from this website. I can’t begin to tell you how angry that makes me.

I feel a special kinship with you because I have a 9 year old son. The fact that you are able to go skating with your 8 year old after having a gamma knife procedure says a lot about your strength and perseverance and a lot about the benefits (or lack of debilitating side affects) of gamma knife.

Regards,

Terry

[ginnyde]

Maureen,

My husband's cancer was dx'd because he had a group of seizures. He had one brain tumor about the size of a grape I think. He had a craniotomy to remove that and then the neurosurgeon said next step is WBR. Dumb us, back then we never questioned, we just did it. We respected and trusted that doctor.

Earl never fully recovered from the brain surgery and WBR. If you read my profile, he has subsequently had many more treatments. His concentration, short term memory, balance and dizziness problems I attribute to those two treatments. But then again, they may also be the reason he has outlived the dx time.

Earl now has many, many tumors in his brain and liver. He tried Temodar but that seemed to have no effect. Our onc. said that once you have brain mets, it is 90% that you will have more. I don't know if this is accurate but worth questioning your docs about, may help your decision.

I think I would try for one of the newer treatments, sterostatic etc.

Tough decision but I wish you good vibes and keep us posted.

[moocow35]

Please research brain radiation necrosis (I think that is how it is spelled) My mother had symptoms only from the spread of the cancer to her brain which led to the initial diagnosis. She was immediately given WBR. The treatment in itself was extremely rough on her, but supposedly it did get rid of the cancer. About a year after, she started a rapid decline, soon unable to walk, slurring of words, stopped eating, could no longer speak, sleeping all the time until she recently passed. She did have a complete scan at the onset of all these new symptoms, and they could find no more brain (they thought it was back) cancer. Bottom line, from what I understand, the WBR killed the cancer which gave my Mom an extra year. BUT......it also starts to kill off the good cells (necrosis) and that is basically what killed her. There is good and bad with this treatment. Without it would she have lasted 1 1/2 years from diagnosis?, most likely not. However this was a very sad way for her to die, especially since there was "remarkable" shrinkage of the lung tumor.

Robin

[john]

Here is a really good article

http://virtualtrials.com/brainmets.cfm

I read that 10-30% of patients who receiver WBR will have neurological problems. Of course that has to be weighed against the positive outcomes.

I think Gamma Knife etc can be used multiple times and as your Dr said it is targeted so it won't stop other mets from popping up.

I *think* by using Gamma knife (target the tumors) plus wbr to prevent other recurrence provides the best outcomes.

This study is from Greece. Newer studies are trying to confirm the results

http://www.411cancer.com/syndication/ve ... ypeID=NEWS

http://www.clinicaltrials.gov/ct/gui/show/NCT00080938

This link talks about RSR13 and Xcytrin(motexafin gadolinium) ( I have not read throughly), but the dates of the research is old (2000 and 2002)

http://www.lungcanceronline.org/treatme ... brain.html

[Bill]

Maureen I.

RE : WBR

I am also looking to hear from those of you that have had this procedure (or your caregivers) to find out what your experience was like during treatment, immediately after treatment, and long term after effects on the quality of your life.

/////////////////

My wife's final WBR treatment was 6/3/04. She lost her head hair and eyebrows. Scalp was slightly burned and still is dry and scalely looking. She felt weak and tired most of the time. Some loss of appetite. No apparent psychological or neurological changes so far.

[Margaret]

Maureen,

As you know, I was struggling with this whole issue a month ago. I was encouraged by two radiation oncologists where I am being treated presently (UCSD) to get WBR. I went up to Cedars Sinai for a second opinion and my medical oncologist there and the radiation oncologist that he referred me to, both felt that WBR wasn't the way to go. Armed with their information, I stood my ground here at UCSD and will have my third focused radiation out of a scheduled 14 treatments today. Whether I made the correct decision isn't really something I know, but I had to go with what felt right for me.

I felt that the doctors encouraging WBR were not stressing the possible side effects at all. In analyzing why they were pushing that procedure after I had told them that I really wanted as conservative an approach as possible, I determined that they were looking at the disease, the extent of the disease and were really thinking that I wouldn't be around for the full side effects. The doctors who have been treating me over the full two years plus and have witnessed my resilience have a different approach! The one thing all the doctors agreed upon was that "something" had to be done, so I am doing this less intense radiation.

All of this is difficult...making decisions, undergoing treatments, keeping a positive attitude, but you just have to keep doing it. I will be following your posts to see what you decide and to support you in your decision/treatment. Contact me any time!

Blessings,

Margaret

[Melinda]

Muareen,

See "Geoff's" posting under "Good News"-- his mom had WBR and so far, no side effects that we can tell other than hair loss.

Also--"MJ" is researching WBR right now, as well. the two of you might want to share notes.

Finally, you might want to do a search here on the board for "WBR" -- I think you might find a lot of information to SUPPLEMENT your other reseach.

I hope some of this helps.

Melinda

[kimblanchard]

Thank you to all who responded. We met with the two Radiation Oncologists who were very good and answered all of our questions. They both also had very good support staff in their offices. Right now the plan of attack is to get Chest CT (going tonight) to confirm that the chemo is working, get an updated brain MRI to see if these things have stop breeding, and get the two known lesions treated with Gamma Knife. Then, I will need to make the descision as to whether to get whole brain radiation done and chose one out of the two doctors. Both will be difficult decisions.

I am a little more comfortable with the procedure and I have asked both doctors to put in contact with people who have been successfully treated with whole brain radiation.

In the meanwhile, my son and I are off to visit some relatives this weekend in Connecticut. The following week, the three of us are off to a vacation down at the Jersey shore.