NED But Paid A Huge Price To WBR

[Bill]

My wife is NED but has developed diffuse postradiation ( WBR ) leukoencephalopathy. No point in second guessing WBR vs. alternative tx options. This is just a friendly warning to you that postradiation leukoencephalopathy is a delayed onset adverse effect of WBR ( as well as focal brain tx ). It can happen with or w/o chemo ( some studies blame rad + chemo ) and the incidence is very high. Upwards of 80% in patients in their 50's. A real sleeper that suddenly pops up with symptoms ( confirmed by brain MRI ) usually ~ 6 months to 2 years after WBR or focal brain tx. The symptoms can be numerous, progressive and devastating. Basically proportional to the amount of brain irradiated. Many patients, including my wife, aren't warned of this risk, or at least the magnitude, at the time of tx. Like I said, I'm not second-guessing the decision to use WBR in my wife's case. There are apparently some less destructive tx options to WBR but discussing the qualifying tx criteria for these alternatives is beyond my knowledge and the scope of this post. My wife's usually very accessible rad onc has suddenly become " unavailable " for comment.

Good luck.

[bunny]

I'm sorry she's having this complication. I know the NED is good news, but you sounds devastated by the 'cost'. thank you for keeping us informed. you'll be in my thoughts.

xoxo

amie

[SDianneB]

That appears to be one of those little secrets kept by many radiation therapists. When I was considering PCI, my primary care physician specifically had me ask about that, and said that if the answers were vague, to keep pushing, and call him for help if I needed it.

Fortunately, I was with a good group of people and the Rad. Onc. I had was wonderful. He pointed out the pros and cons and helped me through the decision making process. Much of it depends on technique too -- having someone doing a good setup for you, so as not to irradiate too much or not enough.

Going into this, I knew I was in for many things that would help keep me alive, but would also not keep me living in the same way I always had. At best, it's a crap shoot given that so many of us are outliving the odds and the naysayers, but sometimes the cost begins to outweigh the benefits.

My best wishes to you and your wife.

Di

[Cindy RN]

Bill-I am so sorry about the side effects. This disease's treatment can cause awful side effects.

Glad to hear NED!!

[Ry]

Oh Bill...My heart sunk when I saw this. I am so sorry. Thank you for taking the time to post about this and let everyone know.

Rochelle

[ginnyde]

http://www.irsa.org/radiation_injury.html

I found this web site which has a lot of information about WBR.

[karen335]

Ginny,

Thanks for posting this info about WBR.

Karen

[mamasbabygirl]

Bill, is this the same thing as radiation necrosis? I am sorry the news couldn't be all good.

[TAnn]

Bill,

The news that your wife is NED is so wonderful, but the toll that all of the treatments take on our bodies is devastating.

I'm not sure I really understand what exactly the diagnosis means for your wife, I'll have to do some research, especially since I had WBR 1 year ago.

Thanks for the info, and it was good to hear from you!

Sending my prayers for your wife.

TAnn

[Bill]

Thanks to all for the kind words. To answer MBG's question, this is an oversimplification but, IMO, there is a basket of interrelated terms and conditions, including radiation necrosis, that reflect different stages, severity, etc. of the same general malady. I say this because in my wife's brain MRI radiology report the radiologist diagnoses her with postradiation leukoencephalopathy and, for instance, adds that he sees no evidence of vascular defect " at this time ". This tells me that the vascular-related issues ( with stroke as a major threat ) are potentially part of the same process at some point with further progression and deterioration. This is a horrible outcome. To beat cancer, at least in the short-term, only to be struck with a disabling treatment-induced neurological condition that has already greatly diminished my wife's quality of life. At this rate if the deterioration doesn't stop now I feel like she will be bedridden and totally helpless within 6 months.

Thanks again for the kind words.

[shirleyb]

Bill,

I am so sorry. You and your wife are in my prayers.

Shirley

[MilliBr1]

Bill, I understand what you are saying the doctor felt my moms decline may have been due to her PCI. I will keep your wife in my prayers..

[karenl]

Bill

I am so sorry to hear this news. What you have described sounds very like the information that gdpawel has posted about what happened to his wife following WBR.

Again, I am very sorry.....

Karen

[Frank Lamb]

Bill,I am sorry to hear about the side effects,keeping you and your wife in our prayers and thoughts.

[Fay A.]

Bill,

I'm so very sorry. Thank you for posting this information. I know it must be devastating for your wife and you. I think it is a very unselfish thing for you to do to share your experiences with us. I can only hope that the damage you speak of does not continue to accrue over the next 6 months. You all have my prayers.

[kamataca]

Bill,

You and your wife are certainly in my prayers.

My dear friend's husband had WBR a few years ago. They are thankful that he is still with them, but he mirrors an Alzeheimer's patient now. She also said that the risks were not fully explained to her. As I read about many of the board members WBR treatments, I keep praying that medicine has improved since he had his done. Great advances are made every year, so I am hopeful.

Kelly

[mamasbabygirl]

Bill,

My mom's cancer has been stable for months since her Alimta treatments, but the radiation necrosis has made her disabled. My mom had WBR in January and has been treated with SRS twice, but now the necrosis is terrible. Between the high steroid dose (which wreaks havoc on her emotions, adding 50+ pounds which makes her breathing difficult, etc.) and the necrosis making her left side unusable (kind of looks like she has had a stroke bc her leg drags and her left hand is drawn in), she struggles with almost everything.

Good news is, she is here and has some days where she is her old self and some days where she is not. Hang in there. By the way, my mom is getting ready to start 60 daily treatments of hyperbaric oxygen therapy to try to help the necrosis. Have you guys checked into that at all?

[Sundrop1964]

My 65 year old father was never properly informed of the potential risks of WBR either. We were only told it was for "preventative reasons" to help prevent further brain mets. We were way too trusting of the medical establishment. He developed the symptoms 6 months after completing WBR. The mental and physical deteriation was terrible and progressive. At first he had trouble walking.. then he was falling.. and within a few months he couldn't walk at all & was 100% bedridden. He couldn't handle any of his personal needs. He was unable to even move which led to futher problems. When he ate he would first hold the fork out in front of his face - then open his mouth.. then slowly bring the fork to his mouth. It was terrible to watch his mental status to deteriate to that of an Alzehimers patient. His speech was slow and deliberate. It was so sad. It was devastating. After the CT the doctors would only say "damage to the white matter" but as soon as I said "radiation necrosis" they would downplay the whole thing.. oh-oh we have an informed caregiver. His cancer was also NED and he had a succesful lung removal prior to developing radiation necrosis. My father may have had LC.. but he died due to treatment options. He had the WBR early in the game... within a month of onset.. before I had adequately researched WBR. We didn't question the treatment.. I wish we had.. please.. if you are ever offered WBR.. question your radiologist... sundrop.

[Ellen B.]

Thank you for posting this info, Bill.

So sorry for you and your wife. You are in my prayers.

Ellen.

[Ann]

So sorry to hear that there are so many "side affects" asscoiated with your wifes' treatment. I pray that none of these symptoms will ever become a part of your lives.

[karen335]

I had a brain met that was removed surgically. I went to the City of Hope in Duarte, CA. The first thing they said to me was I needed WBR to remove any left over cells from the tumor. That was a year and a half ago. I said "NO" to WBR. I was very very adamate about not doing WBR. I instead had stereotactic. I did a :OT of reading about WBR and had a lot of informed people here on this site share information. I recently had an MRI done and the scan was read by my nuerosurgeon and he said all was clear. It looked like I had radiation necrosis and I had two options. 1. Remove necrosis via surgery

2.Stay on very very low dose Decadron for the balance probs and headache. Said Decadron was such a low low dose and virtually no side effects. I'm taking .05mg per day and it works.

Nuerosurgeon wants to do a PET/CT scan to rule out anything else deffinately. He said I had beaten the odds. I am so blessed. Thank you, Jesus.

Radiation Onc from City of Hope called me yesterday, very pestimistic and said we need to do scan, it may be cancer and would have to do WBR. I said we can doe scan, but again "NO" to WBR. I said to him, I have necrosis. Now this is the doctor who originally gave me stereotactic. Sounds like he is trying to cover his bootay and shut me up as Sundrop said happened to them.

These doctors go by Protocal, they don't know how much treatment can be given to a patient. They are guessing and practicing on us. That's why they are called practicing physicians. I put my faith in God, he knows when it is my time and these doctor's don't, they are only assisting Him. If you feel a treatment is not right for you, don't do it. Listen to your body.

I said to the doctor from the City of Hope that it is necrosis and he became VERY defensive...

I hope I didn't offend anyone. I just pray for all of us.

Hugs,

Karen

PS - Bill, I see you are in So. CA.... So am I

[Fay A.]

I don't see how anyone would take offense at you sharing your experiences, Karen.

I began researching the issue of WBR when I learned that the "Not a Tumor/Is a Tumor" in my brain really is a tumor. At the time there was a good chance it would be malignant, and the truth is we won't really know the pathology for certain until it is removed. But back then I started doing research on the subject of WBR, etc. and after reading everything I could on the treatment of primary and metastatic brain tumors I made the decision that when the time came for treatment it was going to be Intrathecal Chemo and Surgery. My tumor is not deep in the brain and would be easily accessed and excised with conventional surgical techniques.

I know two people who went the Intrathecal chemo route...one had small cell and the other had NSCLC. They did not experience what you folks are describing. And they went with the Intrathecal Chemo for exactly the reasons you describe.

[gerbil runner]

The real tragedy here, IMHO, is that the risks are not fully explained by so many doctors. For some patients, the decision is 99.9% chance of death soon by disease or 50% chance of incapacitaion/early death due to WBR. Many patients would make the same treatment decision, but with a more appropriate frame of mind. And it seems WBR should be a treatment of last resort.

My mother turned down PCI due to the risks. She is now dying of brain mets. But if she had had PCI, we all strongly believe the infection she suffered last December would have killed her due to a weakened body.

Without a crystal ball, it is impossible to know which option is best. But everyone deserves to know the risks involved, even if WBR is the only option available. Ignorance is not bliss.

[Bill]

I have received several messages asking me about my wife's ( WBR ) postradiation leukoencephalopathy symptoms and leukoencephalopathy symptoms in general. If you do an on-line search of the condition the cause and symptoms are clearly and accurately outlined.In my wife's case the symptomatology is right on. Balance and related issues are a prominent feature along with mental changes. But, in my wife's case, as she has had two spine surgeries and already walks in a slow and guarded manner with a cane, hunched over, the balance related symptoms are harder to identify. But, I am noticing more unsteadiness and use of the cane to correct it. She has fallen once and I was stunned to hear her scream like a little child. Her mental deterioration, esp. loss of memory, loss of intellect and confusion are significant. All of this just sudddenly hit at about 14 - 15 months post WBR. Initially, we couldn't figure out what suddenlly happened until the brain MRI revealed the diffuse white matter damage. It doesn't appear that she has gotten worse in the last couple of weeks but in her current condition she can no longer safely take care of herself. There has already been two kitchen ( grease ) fires and she's the mental and emotional equivalent of a young child wandering around. We are aware of a gentlemen cancer patient in his mid 50s that's ~ 3 + years post-WBR. He has no balance or ability to walk w/o falling. I'm estimating that it took ~ 2 1/2 years for him to reach this point. He has just received an electric wheel chair but hates it, therefore, he is bedridden. He has no bladder / bowel control and is also mentally child like. My wife hasn't lost bladder / bowel control yet but she has had several " accidents " which indicate a borderline situation. The Alzheimer comparison that others have mentioned is pretty accurate. My big fear now is that with further deterioration vascular damage will cause my wife to have a stroke.

Bye for now.

[J.C.]

Bill

I am so sorry for the condition of your wife.

Sending prayers hoping they help both of you.

Gentle hugs

J.C.