Need some advice........QUICK(WBR)

[Angie Daughter of Bill]

O.K. troops, I need a bit of advice from those who have had brain mets. The little that I know...........whole brain radiation is a booger! I know that there is conflicting views on the treatment of brain mets. If there are 4-6 mets, a lot of doctors say NOT to do WBR..........just radiate the mets.

John, Fay A., Oncodoc......any of you who have researched WBR vs. spot radiation, please let me know your thoughts. I just don't have the strength, courage or energy to research this morning. Any info would be appreciated. Also, those who have had WBR, what side effects did you have? (short and long term side effects) I want to go in to the doctor's office armed with a little info.

Thanks in advance. Love to all!

Angie

[kimmek]

Good Morning Angie

I know nothing about WBR but I wanted you to know you, and your Dad will be in my thoughts and prayers today and everyday as you battle on.

God bless you

Kim

[stand4hope]

Angie,

I only have a short minute to respond here. My husband started with WBR for 8 brain mets. They wouldn't do chemo until after the WBR. They started with WBR to shrink the mets as much as possible and to destroy any unseen mets. They advised they could next do spot radiation (Novalis in Indy), although normally only 4 mets was the maximum number most doctors would treat. He had no problems at all with the WBR other than losing his hair and getting an incredibly dry scalp. After WBR 6 brain mets remained. By this time, he no longer had headaches. Actually, the headaches stopped within 24 hours after starting decadron.

He then went through chemo and Novalis (a different type of gamma knife, stereotactic radiosurgery) last November. They radiated all 6 mets. It was a very long day to get it done, and there were no side effects or problems of any kind except a slight headache from where they attached the helmet to his head. Two mets disappeared completely after this treatment, and only 4 remained. Total shrinkage from WBR and Novalis was a little more than 30%. To date, the mets are stable (1 year later) and he has no symptoms at all.

A new MRI is scheduled for later this month.

From other posts here, fatigue seems to be a big problem for those who received chemo before WBR. This is because the mets didn't develop until later. I assume the reason for the added fatigue is because the body has been weakened by previous chemo. TAnn comes to mind as having had extreme fatigue with WBR and she had chemo before she got WBR. As a matter of fact, I think she was getting results of a new MRI yesterday, but we haven't heard from her yet.

Gotta run - but, as always, please remember that I am praying.

Love,

Peggy

[shelliemacs]

bad side effects. fatigue, short term memory loss, unsteady on feet hair loss,

positive side effects: the BBB is broken so chemo can now get into the brain itself. decadron almost eliminates any symptoms and increases appetite. works quickly and can be very effective

these are my moms experiances, not saying this is law.

[stand4hope]

Angie,

I forgot to mention that he also had some short term memory loss and confusion, kind of slow to respond, but this only last for a few weeks after WBR.

Love,

Peggy

[john]

I have read that one study saw the best results when gamma knife was used on a few lesions, THEN WBR to take care of any micrometastasis

Iressa may help with the brain mets, I think most of the evidence is anectdotal. There have been no trials that prove this yet.

Temodar is being used in clinical trials with primary brain and brain mets and I believe it does response rate.

http://www.docguide.com/news/content.ns ... 4D00662137

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

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

There is also a drug in trials called RSR13 (a radiosensitizer)

There is another drug called Xcytrin that is supposed to help with neurological effects of radiation

Melatonin was used in a trial a while ago, but I don't think the results were that great since I have not heard any more about Melatonin lately

[SBeth]

Angie,

In addition to what the others have said; Bill (my husband) had his original two mets to the brain treated with the radiosurgery to directly radiate the two spots on the brain and had no complications from this procedure. However, when he returned in late October for his MRI and 5 more spots were discovered; the neurologist and radiologist would not recommend the radiosurgery. They STRONGLY encouraged the WBR to treat the new mets. It has only been a few weeks since he completed his WBR treatments, but it certainly took it's toll on him. He went to bed for about 10 days and was pretty much fasting the whole time. I was positive that this was from the progression of the disease, but just as everyone on the board assured me, it was only the side effects of the radiation and he is already beginning to feel much better. As far as other side effects, we haven't noticed any to date, but it was our understanding that the memory loss, confusion etc. would not present until further out from the treatment. Good luck with your Dad's appointment and I'm still keeping your family in my prayers.

Love,

[Bill]

Also, those who have had WBR, what side effects did you have? (short and long term side effects) Thanks in advance. Love to all!

Angie

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

Angie :

My wife experienced some fatigue and temporarily lost her sensation of taste. She lost her head hair and eyebrows but that didn't occur until a week or two after completing WBR. No other symptoms or problems. So far the WBR seems to have been very successful.

Good luck.

[TAnn]

Hi Angie,

I was told when they found my 6 brain mets that the only type of treatment for this many tumors was WBR. I believe less than 4 and they can do stereotactic or Gamma Knife. The feeling is that if there are more than 4 mets there are probably more cancer cells floating around up there that haven't formed tumors yet, so they get all of them with WBR.

My main side effect has been fatigue. It has actually gotten worse the further out from radiation I get. The dr. said it is probably a combination of the wbr effects and the Iressa. I go to sleep at night at 9:00, sleep all night until about 9:00 am, and I can go until about noon and I need a nap, which sometimes lasts 2-3 hours and then I'm pretty much "toast" the rest of the evening. Also lost my hair, have occassional headaches and my ears ring constantly.

I guess I don't make it too appealing, do I? I'm sure your dad will do just fine. The good news is that the actual radiation only lasts 1 minute, 30 seconds on each side of the head!

TAnn

[Fay A.]

Angie,

I am not ignoring this...but I have some things going on at home that are making it difficult to spend too much time at the computer. I will try my hardest to come up with recent and reliable and reputable information for you this weekend. I am just so sorry to hear of this setback, but I am encouraged by your Dad's improvement on Decadron. Thank Goodness for these miracles... because that is what they are.

Much Affection,

Fay A.

[SJAS]

WBR was VERY hard on Steve. Severe scalp burns, his ears swelled up (making it difficult to hear) and turned a blackish color. Fatigue was overwhelming, but has improved in the last few months (finished WBR in 3/04). He seems to be having some short term memory problems, but only noticeable in that Steve used to have one of the most incredible memories I have ever seen. Even he has commented on how he is forgetting things, but it's not really compromising his life at this point.

You can read some of my old posts about Steve's WBR. He was being evaluated for Gamma Knife for 4 mets which disappeared with chemo. We resisted WBR because of possible side effects, but he soon had 15 mets. No choice at that point.

Not to freak you out, but I am soon posting a request for info regarding bleeding in the retinas. The opthamologist asked if his eyes had been shielded during WBR - but it was our understanding that the WBR only went to the top of his eyebrows. Will post when we get more info.