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new to this board/dad has NSCLC

debaroo
Posts: 5
Joined: Jan 2003

Hi, I am new to this board, I must confess that I was looking for the lung cancer survivors message board, but it seems to be offline for some reason. My computer went down and is back up and running but I can no longer find this site, and really wanted to check up on the people there that I have grown to know and care about. Anyway, my dad was diagnosed in Jan 2002, orig. with SCLC, but a more recent; accurate biopsy shows it is actually NSCLC. Started Iressa after no chemo for three months, but had to stop as he now has 3 brain mets. Scheduled for Gamma knife on Thursday 1/10/03. Is otherwise in great shape. No pain, and honestly you find yourself having to remind yourself that he has cancer at all. I hope to build new relationships here, and hope to be able to offer support to anyone that needs it. I believe it is true that knowledge is power, and where better to get that knowledge but from others that are weathering the storm too? We're not sure if we should go for full brain radiation after the gamma knife, as precationary, or get him back on Iressa, since he never really got a chanced to allow it to work (if it will). I think we're opting for the latter, as it may protect the rest of his body from mets. I don't know, its such a huge decision. Any advice or insite would be welcome and greatly appreciated. Thank you in advance. Take care, Deb

betty2
Posts: 91
Joined: Apr 2002

Hi, I just read your message, I'm afraid I can't help you with the meds, And I don't know what you are talking about Mets in the brain. I had adinocarcinoma in my left lung and large cell carcinoma in my right lung 3 1/2 yrs apart. all they did for me was to remove 1/2 of my left lung and a little better than 1/4th of my right lung. I'm on this message board quite a bit here lately and I don't hear much lung surgery being done. I didn't have to have any treatment either time. Of course this all started in 1987 and again 1991, and I'm sure they did things different then. What is a Gamma knife, and what are mets?
Would love to hear from you and tell your Dad good luck on the 10th.
betty2 email address jodnns@aol.com

peg921
Posts: 10
Joined: Dec 2002

Betty,
Mets means that the cancer has spread (or metastacised) to other places. In this case, the brain. Gamma Knife is a radiation procedure with an intense dose going directly into the tumors in the brain without having surgery on the brain. My husband also has NSCLC and mets to the brain. He has had whole head radiation and next they are scheduling the stereotactic radiosurgery (gamma knife is one of those procedures) for him as well. Hope this helps. Peg

betty2
Posts: 91
Joined: Apr 2002

Thanks Peg, What is the survival rate with this treatment? I have never heard of any of these treatments. I had a real good friend who had surgery , on the brain but they couldn't get it all, but to my knowledge he was never offered anything like what you have described. Hes been gone now almost 3 years. Too bad that they didn't offer him this treatment. Who knows what might have happened.
Thanks again,
betty2

debaroo
Posts: 5
Joined: Jan 2003

To Betty and Peg, I heard about gamma knife when my dad was diagnosed in January. While doing research I came upon the message board that I mentioned earlier, and there were posts from a woman named Kerry that were about how her dad (also diagnosed with NSCLC several years ago) had received gamma knife on two seperate occasions, with a couple of years in between the procedures. I know he was scheduled to have it for a third time recently, but unfortunatly I can't find a way to get in touch with her to find out how it went. I know that from what my fathers radiologist said there is a 50% chance of a recurrance of tumors in the brain after the gamma knife. My dad will be watched closely after the procedure, and recieve another MRI one month after treatment. There are websites about gamma knife, and it is becoming more available. I live on Long Island, and there are now 2 hospitals that offer this amazing technology, and these only came to Lond Island within the past six months! We lucked out. The best thing is that gamma knife basically kill the tumors and leave the unaffected brain tissue alone, so there are hardly ANY side effects. I hope this was of some help to you. Good luck to you and also good luck to your husband, Peg. Keep us posted. Take care, Deb

betty2
Posts: 91
Joined: Apr 2002

Wow, that sounds like a great thing to me. I had just never heard about it. I will go to the web and read up on it. I guess when I had my lung cancer they didn't have such a thing. I was just lucky , they caught it in time.
Good luck Deb & Peg. I would be very intrested in hearing from both of you. betty2
email address jodnns@aol.com

jazznpets
Posts: 2
Joined: Jan 2003

Hi! I'm new to the board, too, having looked for some time for a caregivers' support group. My dad has Stage 1V lung cancer. He had the upper lobe of his right lung removed 2 years ago, was told that there was no metastasis; however, it reappeared in another lobe, met to a rib, and to the other lung and lymph nodes. The only way this was discovered was when my dad decided to ask for a follow up CT scan? Why don't doctors suggest follow up scans! He has been given 6 months to live, was on Iressa and decided to quit because he felt worse with the Iressa, and is on pred, and Hospice has been called in. He is doing very well right now--little pain, little coughing, appetite increased. He is ambulatory, gets to go out and eat with my husband, mom and me pretty often, and has support of friends as well. He is 87 and has decided on DNR (has a living will). I'm scared about what is to come. I, too, am concerned about met to the brain and I guess due to the circumstances with his decision, his absence of pain and our loving presence should be our greatest concern. I just don't know what to expect in thee coming months. My mom has a compressed vetebrae in her back, too, which happened just before the holidays. She is just starting treatment for that now (she is 81 and in good health). My husband and I are caregivers for them, live close by, and are over daily.

Just nice to know that this support group is here. I was going to mention Hospice to you because their support is so wonderful.

jazznpets
Posts: 2
Joined: Jan 2003

Another thing I wanted to mention. Have you checked out everything you can get on Iressa and its success rate. I can see you have a difficult decision.

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