Nsclc-Brain Mets

Hi all,

My dad was diagnosed with NSCLC lung cancer in June 05, and has had a total of 3 treatments using a combination of chemotherapy along with a new drug Avastin. It has done wonders for my dad. He has liver mets, bones mets, and just recently we found out through the MRI scan that it has spread to the brain. Using the new drug,his tumor in his left lung has broken down and necrosed in the center, and his lab results had seemed to drop down dramatically. The only concerned now is the brain mets....does anyone know if this new medicine avastin help w the brain mets....
The radiation doc says that he needs whole brain radiation immediately, but the problem is I don't know what side affects may occur....
Memory loss? Brain damage?????

worried and confused,
luckystar

Hi Kathy N.
Hello my name is john and I also have nsclc lung cancer w/brain mets. I had surgery to remove 1 large tumor and also had my whole head radiated.
As for side affects I guess maybe everyone might be different. I had 14 radiation treatments as for side affects I lost my hair, my head was burnt like a bad sunburn and had a little hearing problem. That’s about all I had. So hope I may have helped you out. If you have anymore questions please ask I wish you luck and hope to here from you

John M.

Hi,
I'm thrilled with your success with the tumor using Avastin. My husband has had Carbo/Taxol/Avastin for 4 rounds and we go today for our CT Scan results.

As for the brain mets, the treatment seems to be tied to the number of mets at first. Most of the people I talk to agree that they have had WBRT recommended to them if there are more than 4-6 brain mets. The side effects I read about can be serious, but the argument is that one can surely die from the brain mets growth sooner than the cancer tumor and the Docs want to give even the smallest ones that don't show up yet a good dose of radiation to deter them and the bigger ones from growing.

However, after the initial treatment seek out advice how to proceed if the mets grow or return. There are other options than GammaKnife out there; look up Novalis Variable Beam. It has more accuracy capability for some shapes of mets.

I would also like to talk to someone who is one to two years out with WBRT. Anyone?

aly

My 57 yo mom was diagnosed with NSCL mets to brain with 6 marble size tumors 'showered' over her brain. They did 10 rounds of whole head rads and between the Decadron and the rads, she was kind of a mess. Her head was very burned and she lost all her hair quite painfully. I wish I could describe what changes have happened but they are so vast, it is impossible to tell what caused the damage and if it is permanent. Her personality is so different, she is very emotional and short tempered and really is just not the same person. I pray that I get a little bit of her back as she heals. A recent MRI has shown significant shrinkage, but tumors are still present. Taxol/Carbo Chemo also has her so weak she has taken a few weeks off but uinfortunatly she is just not gettting her energy back.

Kim, with stg 4 disease do you find it is worth feeling so lousy? my mom has stg 4 with mets to brain but she doesnt have enough energy to leave the house more than her chemo day. would it be better to just live out life as is, does your family push you, are you waiting for them to say enough or is it what you want.

my mom has stg 4 lung ca with brain mets. she underwent 3 weeks (15 treatments) of full brain radiation which removed 3 lesions.She then had a one time stereotactic radiotherapy to remove the last lesion. she has not had any problems with severe memory loss,confusion or seizures etc. she does seem a little forgetful at times ie.. "where did i put the keys" etc.. but i'm not sure if that isnt from the chemo and fatigue she has now. she is very exhausted which is the most common side effect of the radiation per her md. hope this helps

Its actually my mom and not me, but my honest opinion is this... I think that my mom is miserable. If this is all there is (sleeping half the time and too weak to make it to the bathroom and too confused for more than a simple conversation) she would just prefer to let go BUT... nobody will say this is permanent. Nobody knows. I think if she knew this was what would happen then maybe all those people who said quality over quantity of life is what matters were right.
I think maybe I am being selfish to push her to stay for me and my kids. But is my step dad selfish to keep her for himself? As I sit here feeling like I might die myself from the heart ache, maybe it would be better.... but I am 35 and too young to not have a mom. I am so scared my kids won't remember her. I am just so scared of everyhting.

Kathy,
My mom was diagnosed with Stage IV NSCLC one year ago. Her most life-threatening issue
was brain mets. A couple of things regarding your dad's brain mets:
- Whole brain radiation: We declined this treatment based on our homework which showed signficant and permanant side effects. Maybe worse than the cancer itself. This is a very serious decision and alternatives should be investigated.
- My understanding is that Avastin can be dangerous when used in the presence of brain mets. Avastin can cause hemorraging which in the brain can be probablematic to say the least.
- My mom abandoned chemo (and was not a candidate for Avastin) and has been on Tarceva.
We are getting miraculous results. We know the drug will stop working at some point. But she has already outlived the statistics with a relatively good QOL.
Hope this helps and best wishes battling this terrible disease.
Paul.

Hi! I have the same cancer as your Dad (dx in March). I have spine and now brain mets. I did whole brain radiation for 4 weeks and just finished it last Friday. It's hard to say what side effects I had from it b/c of all the meds I'm taking. The Dr. said I'll continue to get benefits from the treatment for a couple of more weeks; so we haven't done a scan yet.
I had started on Decadron and Dilantin b/c of a seizure I had before we started the radiation (how we found the brain mets). Dilantin is for the swelling and Decadron is a steroid. I felt great while on the Deacadron; good energy, felt like "my old self". That prescription was finished a couple of weeks ago. Then I crashed from coming off the Decadron - no energy, no appetite. A Dr. I'd not seen before Friday told me that 1 mg of Decadron is equal to 30 mg of Prednisone! So know about the meds; I think they should have weaned me off of it gradually.
I know that I don't think as clearly or quickly; the cause I don't know; seizure, tumors, radiation?
I think the radiation does cause fatigue. That's the main thing I've noticed.
Best wishes to you and your Dad.
Susan

Oh yeah! I forgot about the hair loss!! I lost all my hair again and eye brows. And my scalp and forhead and ears are very dry with flaky skin. My forehead and ears look sunburned.
Susan