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

I just wanted to post quickly tonight as I have to get back to my Harvard on-line course (no, don't ask). Anyway, some have asked me if I was sorry about the Gamma Knife..NO WAY. The procedures saved his life without question. Yes, the seizures were scary but did no irreversible damage. His scar has gone away so quickly it seems like all this happened 6 months ago. Additionally, Gamma Knife led us to CyberKnife and IMRT for the lung and liver tumors. It all worked for him so I have to say we are believers in all kinds of stereotactic radiation. The other thing is that Jeff was on chemotherapy for an entire year with no breaks. many patients simply cannot handle the medicine. Jeff's stamina, the doctors willingness to switch chemotherapy protocols quickly if they did not show immediate results and the Good Lord have truly blessed us beyond comprehension (given the original diagnosis and prognosis). It is hard to believe that in January it will be two full years since they told me he had just a few months to live. There is hope in the world! Thinking of you all, Trish

I know I'm coming in kind of late but why is there no chance of radiation? There are so many knids of radiation treatments. Just curious. I would never go with the opinion of one doc. They are just so...human. Trish

I have been away a long, long, time. The last time I was here Jeff had been arrested for road rage caused in part of his reaction to decadron. In the mean time my dad in Dallas began suffering from congestive heart failure. I flew out there to make sure that he ws comfortable in the nursing home. It was just a matter of time for him. No sooner had I returned then Jeffrey started suffering seizures! His whole right side almost collapsed.Then my Dad died while Jeff was in the hospital. While I was gone Jeffrey regained most of the control on his right side, had an MRI and the doc said he needed brain surgery ASAP. Right after I got back Jeff suffered another seizure. All of the problems were being brought on by edema and growths in his brain that were caused by so many Gamma Knife treatments (18). On November 14th He had his brain vacuumed out (literally), biopsied (negative) and now he is back at work and his old self. For now he is still NED so inspite of everything, I am greatful. So much has happened to everyone while I have been running around like a chicken with my head cut off. I hope you all can forgive me..sometimes we get so caught up in our own drama we forget others. Trish Trish

Dear all, Jeffrey is still alive and kicking and still working but....and this is a BIG one. We think due to the decadron and delayed radiation brain necrosis he had a terrible road rage incident (no one was hurt) and was arrested and thrown in the County jail. I didn't find him until the next day when I had someone run my tag and found my car in an impound and the police informed me that he had been locked-up. Now we have to deal with 2 felony counts, hire a lawyer, and if we they take his license, deal with him not working or figuring out public transportation. I keep trying to turn all of this over to God but I am at the verge of "melt-down". The good news is that his cancer has never come back and that is a miracle. I think of all of you often and read the posts but have been so paralized with angst that I have not posted..sorry Trish

Kasey you are such a wonderful cheerleader for all of us! Heck I am terrible with names..Jeffrey is still better than I even with the darn holes in his head. Hmm, what can I blame it on? mentalpause. Love, Trish

Finally, the scanning thing is over again for 3 months! His brain is still clear. He has no more appointments until the end of August. The doctor said that some of his residual problems like groping for the right word and short term memory loss will continue to improve to a point but for the most part he will just have to learn to live with his new self. All in all I say it is a small price to pay to have him whole and happy..a blessing and a miracle everyday. Prayers for all. Trish

My husband had 13 brain tumors and trust me, he was completely out of it. They can be dealt with by cyberkniofe or gamma knife. Our Doctor has removed 40 brain tumors from one person so I know it can be done. Very few doctors will do this because it is not standard protocal but if she is responding to the chemo in the rest of her body then I would demand treatment ASAP. I know the brain thing is scary but I certainly not throw in the towel! Best to you, Trish

Well the good news is that he is clean again from the neck down. The doc couldn't or wouldn't read the brain MRI so he has to go down to the Gamma Knife Doc for that reading. I can't go with him because Iave to give a final exam this morning. I am sending a friend because Jeffrey never asks questions and he never writes anything down! Keep those prayers coming one scan at a time. Trish

Dear Terri, you are very brave with all of this. I really hope that your days can be made pain free. You deserve serenity. I have heard that hospice is wonderful. God bless. Trish

Hi Pam, Have the doctors suggested IMRT or Cyberknife on the tumors? My husband had both procedures on his lung tumor. Trish