trishnmiller

I have been following your saga and re-living our battles with the doctors and the insurance companies..all I can offer is do not give in. You will win. They depend on exhausting you and kicking you while you are down so you will go away. They are going to lie about the denial or you would have seen that denial paper by now. You have the record here for reference. I ended up using my own rants to remind me what I had been through. Call the pharmaceutical companies and tell them that you are being denied coverage. Take video of your husband's struggle. Offer it to your local "action" reporter, call the insurance company everyday to remind them that you will need more home health and , as was suggested, record all calls. It was a battle but it didn't kill me and it surely made me strong. You are doing great so just keep it uper! Bless you, Trish

She was here to greet us when we were frightened and alone. Light a candle for her loving soul on the journey home. Trish and Jeffrey

My husband had 21 tumors removed from his brain by Gamma Knife back in 2005 (4 procedures). There have never been anymore. He will take seizure medication for the rest of his life because of the 21 "dead" spots in his head but this is an acceptable alternative to what might have happened. He also had tumors in his liver and right lung removed with Cyberknife. This is not ordinary protocol by any means and it is hard to convince the docs and insurance company that it is a viable complement to traditional chemotherepy in Stage IV NSLC patients. It is a statistical thing with them and they don't want to throw money out the window. The end result is that they did it our way, he is still cancer free 4 1/2 years out from his original diagnosis and he has not been on chemo of any kind in 3 years. Our path and results are atypical but you can't argue with success. I am praying for you as I do for all of us everyday of my life. Trish

Welcome to our world of "somewhat normal". What a blessing! Trish and Jeffrey

I think the answer is in treatment and in the cold fact that not every Stage IV NSCLC is the same. My husband who is still holding his own and has been NED for over a year only had one tumor in his lung which was in the upper right quadrant away from vital organs making it treatable by cyberknife. He had one tumor in his liver and it was treated the same way. He had 18 tumors in his brain which were Gamma Knifed..so, yeah at the end of the day it is still Stage 4 but he was able to have unconventional treatments which have saved his life up to now. My dear friend's husband was diagnosed in April of '05 and died in August..same disease but very, very different outcome. Trish

frank, you truly are the best and it sure doesn't hurt to have a great sister! i feel like crawling across that rug to give you a big hug..consider it done! trish

The April after my husband was diagnosed (1/13/05) my friend's husband was also diagnosed with NSCLC stage IV. He was gone by Septmenber. My husband is still with us and cancer free. We both were quite distressed by Dana Reeves' case. Just because you have the money doesn't mean you get the goods if your cancer team is not open to aggressive, fresh off the show room floor techniques. I have found that many oncologists are comfortable with the textbook answers and fail to take into account the many, many options that are out there. If the doctor doesn't believe the patient can make it then what can you do? We changed doctors and even then they thought we were in denial. We didn't care what they thought as long as we got our way. Best to you in your fight with the 'beast". Trish

How in the heck would that doctor know how long your husband has to live?? He is not even your hubby's regular oncologist..how arrogant. I had a similar experience with a neurologist who was new to my husband's case telling me that his seizures were new brain tumors and I must prepare myself for the inevitable. I was furious because we were only seeing her for a meds evaluation. I'm so sorry for what you went through when you were only seeking support. Please don't get too disheartened and remember that doctors are just people wearing lab coats, not seers, and certainly not gods. One day at a Time, Trish

My husband, Jeffrey is 55 and he just passed his 2 year survival date on January 13. He is working, has always worked and has excellent quality of life Trish Miller

I know you are frightened for your Dad but there is much hope to be had. My husband has survived 18 tumors. If you scroll down to his profile at the bottom of this post you will see our 2 year journey. Best to you, Trish

Welcome Ann, Sorry you have to be here but rest assured that the fine people on this board will help you muddle through this difficult time and the strange new jargon you are about to learn. Trish

She must get a second opinion. There are chemos available that can work for brain mets. Here's the thing that I have found over and over again: Doctors (even specialists) are not always as aware of new medicines and technologies as many of the people here on this board and at the end of the day we are all consumers. The doctors are selling and we are buying. You know what they say, "Buyer Beware". Please enourage your friend to get another opinion. Best to you. Trish

Dr Aziak Wolf (neurosurgeon) at Doctors Hospital in Miami, Fl. will do more than 7 mets. In fact he feels that putting a number on the amount is insane. He is quite vocal about it. My husband has had a total of 18 and he used GK on all of them. In the beginning he had 8 and none of the other oncologists would let him have GK and I would not permit WBR. I found Dr. Wolf on the internet. I was so determined that I dragged Jeffrey to him and asked him to recommend an oncologist who would refer us back (for insurance purposes) to him (Dr. Wolf) and that is how we got the oncologist that we have today. I hope this all makes sense to you because you really can't just walk into a neurosurgeon's office without a referral (unless you have megabucks). We are lucky to live in South Florida but we would have flown here to get the treatment. I am sure there are others who will treat more than 4 but I don't know where they are. Best wishes, Trish

It was a normal day and that is the most wonderful thing of all. We never expected to have normal days again. Jeff has been cancer free since the cyberknife of his lung tumor last January. He is scheduled for a PET scan this week but we have no reason to afraid. He had surgical abridement of necrosis in his brain (from gammaknife) in early December and that has solved his seizure problems. Other than that, life goes on and everyday that daily, nagging fear that you all know is a little less present. Jeff still goes to work everyday, we still see our friends and go to dinner now and then and we still have our lttle battles. The biggest difference in our lives today is the appreciation of NORMAL. We know we won the cancer lottery and we vow not to squander the time we have. Even if I can't post as much I still try to help anyone who needs it. We must continue to battle the cancer demons together (including the doctors who won't treat Stage IV aggressively) wherever we may find them. Trish (survivors' wife)

We're praying for you, too. Merry Christmas! Trish