Bummed

jones7676 · 09-17-2008, 10:10 AM

I have to share with all of you that I'm very scared. I've had one brain met which has caused lots of problems. After having stereotactic on it twice it appears it is growing again. I'm having a pet scan Friday to determine if it is necrosis or active - but they are pretty sure it is active. The only option I have here in the U.P. is to have surgery to remove most of it and chemo chips planted in it. I reviewed my info about Gamma Knife and it states that it often works on radiation resistant brain mets so I may be making a trip to Chicago where I had that done to the base of the first tumor I had removed.

Needless to say, I am very nervous and scared.

If anyone has any helpful information I would like to get it.

I would also like to hear from people who have had WBR and how it affected them as they are thinking that might be a wise idea so that chemo can cross the brain barrier to prevent this in the future after I have this treated as there may be more "seeds".

If you are able to send positive/success vibes my way - I could sure use them right now and anyone who has helpful information!

pattyz · 09-17-2008, 10:51 AM

Barb?,

Is there the possibility for you to have Temodar approved for use?

I have been on Xeloda/Temodar for slightly over 3 yrs now. I have had all kinds of response, from near 50% shrinkage TWICE, in just four months tx., to stable, no new mets (ever) and a few progressions size wise when we down sized my dose/schedule.

I am once again at 'no change' after this last dose/schedule upgrade re: last MRi.

This is 'now'. After having five seperate focalized rad sessions to treat 16 other brain mets successfully. Three were of headframe type SRS. Two sessions of CyberKnife/no headframe SRS. Those were over the course of about 18 mos.

Also: for the life of me I can't put my hands on the info, but:

Many trials using a lowered dose of Temodar in conjunction with various rad tx's..... most have to do with primary brain cancer. But, there are also various ca brain mets being trialed, too. These have all had positive results overall.

Just another idea, maybe, for you....

Really hoping for the best outcome no matter how you proceed,

warm hugs if you'll have them,
pattyz

Mary Jo · 09-17-2008, 11:10 AM

Hi Barb,

I can offer you no information or experience regarding WBR or Gamma Knife or anything else pertaining to brain mets but I did want to offer you a hug, my sincere care for you and prayers that God will lead you to where you should go and what you should do.

Love & Peace I send,

Mary Jo

Believe51 · 09-17-2008, 11:15 AM

Always have time for sending positive vibes your way My Sweet. Ed's WBR went rather well. Side effects were minimal and if able, he would do it again. Please do not fret about him and others that have had WBR and mets returned. They found 10 NEW mets in places that were NOT the original spots. Ed had one year without anything generating in the brain! Ew, that sounded rude!

Gamma knife went well too. His complaints were that the IV hurt more than the halo. He also had more than his fair share of Morphine (ha,ha...laughing now). His head healed nicely. No headaches, no bruising, no confusion. Decadron is tough but again, it is the best thing to take for the swelling. He did not get the sleep he needed because one of the mets was in the 'sleep center'. Even the met on the brain stem was creatively treated. It was an all day event for him AND then some because he had to keep getting up since his bone mets (spine) were killing him. He did stay overnight but I know others who went shopping that day.

I am sure you will get better responses from our 'Brain Specialists' here. They will rescue you, as they have rescued us!

I wish I could hug you right now but I can only embrace you in heart. Although I will be cruising the Carribbean, prayers will still come. I will send all my love, prayers and positive enery to those I love here. I was told by a friend NOT to think about cancer while I am on vacation. How can I not?? Cancer is our life and my friends all need prayers and good healing vibes.

I am so sorry that you are facing this. Yes Lovey, it is very scary. One thing I can say is that his cancer appears to be ONLY in the brain, not within the body (others too). I did not know this could happen. He is a great responder to radiation. We do not have the results yet so I cannot share.

Until we talk again, listen for your ears to ring, it will be those prayers and vibes. A loving, positive, healing hug for you. Remember, you have a wealth of knowledge and support here. You also have different angles to attack this from. I know you can do this.

Believe51

Believe51 · 09-17-2008, 11:18 AM

Just left this post to find that one of my heros, Pattyz is quick to reply as always. Sssh...she gets uncomfortable when I praise her but she is one of my heros.>>Believe51

Lien · 09-17-2008, 12:55 PM

Dear Barb,

I'm sending heaps of good, healing vibes to your brain. May those mets wither and die! And now I'm sending you hugs, and vibes of harmony, to ease the fear and anxiety. Ofcourse you are scared! Who woudn't be? But you have the strength and prayers and healing energy of all of us coming your way, to help you through this tough time. I am sending you one perfect rose. Can you feel the velvety petals against your skin? Can you smell it's delicate scent? It is bringing you love and equilibrium. This too shall pass.

Love

Lien

Ceesun · 09-17-2008, 02:36 PM

Barb, Chicago is probably your choice for treatment but I just wanted to add that cyberknife is advertised at St Joseph Mercy in Ypsilanti, Michigan as well--there are billboards all over the central and southern parts of Michigan. Your Michigan buddy, Ceesun....my thoughts are with you...try to stay strong...no easy task, I know, but you can do it.

Sheila · 09-17-2008, 03:13 PM

Barb
You are in my thoughts and prayers in this new fight...please let me know if you come to Chicago for treatment...I am only 75 miles away....anything I can do to help, please don't hesitate to ask.

Bill · 09-17-2008, 03:14 PM

Hi Barb! I'm sending warm thoughts your way and praying that you find answers to your questions from this great group of friends that you have here. Also, I hope that as you get more answers from them, and formulate a plan of attack, that you don't fear or worry so much. I know that's easier said than done. Please know that you we're with you. hugs, Bill

dhealey · 09-17-2008, 03:18 PM

Barb, I can only offer you my prayers and wishes that you find an answer. I will be thinking of you and wishing you the best.

Barbara H. · 09-17-2008, 07:16 PM

Hi Barb,
You have had this area radiated twice. I think there is a chance that it could be radiation necrosis. It is difficult to determine this without going in a taking it out. I have had two surgeries for radiation necrosis. I would be worried about having more radiation if that is a possibility. My surgeon, Peter Black, at the Brigham in Boston was the only doctor who still thought the second time that it could be necrosis and he was right. Even the radiologist was convinced it was another tumor. This is a tough situation and you are in my thoughts. Nevertheless, you might have more options than you think. I would search for a good team to deal with this.
Best wishes,
Barbara H.

ElaineM · 09-18-2008, 04:09 PM

I don't have information to offer you, but I am sending you positive vibes. Hang in there and don't give up the ship yet. Take care.

caya · 09-18-2008, 05:42 PM

Barb -

I am sending positive vibes to you, hoping that this is necrosis. Please keep us updated as to your treatment.

all the best
caya

Joan M · 09-18-2008, 07:30 PM

Barb,

You are in my prayers for finding the right facility and treatment to zap those brain mets. I think you're being really proactive in going to Chicago where you have more options and have had success before. I give you a lof of credit for that, as it's not easy and takes a lot of effort.

Joan

tricia keegan · 09-18-2008, 08:23 PM

Barb,my friend had wbr, and surgery but they could'nt remove it all. Sadly in her case it grew again and another as well. I'm sorry I don't know much more than this but sending you lots of prayer's that someone can help you more and this works for you.

hutchibk · 09-18-2008, 09:58 PM

Barb - thinking about you and praying for a good plan to get over this hump...

jones7676 · 09-19-2008, 12:24 PM

Well, had a PET today, I haven't heard the results. I also called Chicago to see if I'm eligible for Gamma Knife to that spot - I'm now waiting for a call back. The first spot I had was on the surface and they surgically removed it and did gamma knife and it never came back. Thank you for all the good wishes and positive thoughts.

juanita · 09-19-2008, 06:14 PM

I'll say a prayer that everything turns out okay.

jones7676 · 09-23-2008, 07:02 AM

My scans and progress notes were mailed to Chicago yesterday - I may or may not be eligible for Gamma Knife. If I'm not eligible for Gamma Knife then they want to do brain surgery and implant chemo on what they cannot remove. Could end up unable to speak, hear, see....etc. I'm trying to hold it together through all this. I slept good last night for the first time in over a week. I will post again when I find out the news. I don't want to give up fighting....am I crazy?

caya · 09-23-2008, 07:07 AM

Barb - You are NOT crazy - Hopefully you will be eligible for the Gamma Knife. Did they ever determine that this could be necrosis?
I am sending my prayers for you.

all the best
caya