DMLB35 Posted January 9, 2004 Share Posted January 9, 2004 I can't believe the roller coaster my family is on! My dad, Don and at only 68 was diagnosed with lung cancer-bronchoalveolar to be exact. The VA doctors were in no hurry to determine what the "spot" was on his lung due to the fact that "we have such aggressive treatments, there's no real hurry" The doctors encouraged him this was treatable, slow growing and no real concern. Yeah, right! Well the cancer has spread from the left to the right lung and now there is no hope for radiation! The chemo really kicked his butt and left him in the hospital with a phone call to all family to come and say their good byes! My dad is strong and pulled through only to find out his prognosis was 3 to 6 months to live. That was in August when he was diagnosed. We were devastated and my dad very down, feeling betrayed. I did my own research and found a procedure called RFA (radiofrequency ablation) I actually had several choices of doctors. Many others I called will only do this procedure for liver cancer. My dad went to Dr. Jason Williams at the Cancer Ablation Center in Gulf Shores, Alabama cancerablation.com The procedure only took 2 and half hours and when we went back to check my dad in a recovery room, he was sitting up and ready to go get something to eat. He had a bit of pain for a few days in the spot that the needle entered his back but other than that he did fantastic. The doctor and his staff were so personable and thorough! Although VERY EXPENSIVE! plan on a ticket price around 20k- they take credit cards, checks, cash and a mixture of all 3 if necessary! My dad only had the left tumor removed and is using the new Iressa chemo pill which Dr. Williams said is an ideal medication for this particular type of cancer. Again, VERY EXPENSIVE! My parents found the lowest price at a drug mart and for 30 days, costs $1750.00. My dad isn't confident that he will afford to be on this med very long. ( he has no health insurance- his care comes from the VA hospital) Dr. Williams told us one gentleman took it for 3 months and the tumor was gone on the followup CT. I'll keep you posted on his progess. He gets the results from his CT in 12 days. The procedure was done Dec. 19th. I hope this can encourage all of you for possible another option of treatment and/or cure. I am more than happy to answere anyone's questions on this. . My intention is to save a few more cancer victims! God Bless each and every you! Quote Link to comment Share on other sites More sharing options...
Snowflake Posted January 9, 2004 Share Posted January 9, 2004 If your father is a vet (VA hospital), get in contact with your congressperson and local VA rep and start the ball rolling on the cost of his care and medication. I will do some homework for you and see what I can find out (why not, it includes contacting a friend of mine from years ago). One thing about the virtual world, you run into people with "contacts" you never expected.... If I get a list of steps and people to call, I will forward the information on to you. All my best, Becky Quote Link to comment Share on other sites More sharing options...
DMLB35 Posted January 9, 2004 Author Share Posted January 9, 2004 Wow!!! You are good and fast!!! Do you think there is chance that VA will be willing to provide the Iressa for him? I am planning a trip from Virginia to Ohio to take him to the VA hospital in Michigan (lots of traveling! ) We will get the CT results and the doc is just looking to see if his cancer is growing. They didn't know dad was even going for the procedure... all the doctors said was "be sure you have good holidays" a polite way to say go home and die happy! The one doctor told my dad there was no need to schedule any more appts. considering his "situation" I plan to ask if they would provide or even pay half the cost for the Iressa. I don't feel very confident that they will. They seem to do as little as possible for the lowest costs to them. He has honorable discharge, no high ranking status and does not qualify for the Tri-Care Insurance through the VA hospital. I appreciate any suggestions or advice! thanks! Quote Link to comment Share on other sites More sharing options...
Fay A. Posted January 9, 2004 Share Posted January 9, 2004 Listen to Miss Snowflake. You should know that Bronchioloalveolar Carcinoma of the Lungs (AKA BAC for short) was listed as a service related cancer for anyone who can claim Atomic Veteran Status. I've known a few people who were Navy Crew members (maintained ships hull, etc. and exposed to marine paints and varnishes) who went on to develop BAC and it was found to be service connected. The cost of Iressa, as well as the other medical treatments should be covered. And in order to insure that they are you should contact your Congressional Rep ASAP. We are retired military, and the docs were very slow to diagnose me as well...and the insurance was quick to deny authorization to cover needed treatment....and I was quickest with having contacted my Congressional Rep in advance of the denial, and the denial of the appeal. A call from the Congresswoman 4 mintutes after the telephone notice of the last denial and being told I had no more appeals left turned into a follow up call to tell me that my case had been reviewed, and that they had made a compassionate decision to allow me to have the first lung cancer surgery. Please don't waste any time in writing and sending the letter to the Congressional Rep. Dealing with this is part of their job, and unfortunately they have to intervene on behalf of lung cancer patients A LOT! Another thing you may want to consider is the looking into a clinical trial with the drug Tarceva...it's an epidermal growth factor receptor inhibitor like Iressa. When we are enrolled in clinical trials we do not ususally have to pay for the investigational drugs. Best wishes to you and your Dad Quote Link to comment Share on other sites More sharing options...
Ry Posted January 9, 2004 Share Posted January 9, 2004 Wow it always amazes me how good we are on this board when someone needs something; we sure do hop to it! Are you coming to the VA in Ann Arbor? I understand it is better than the one in Saginaw. Quote Link to comment Share on other sites More sharing options...
Snowflake Posted January 9, 2004 Share Posted January 9, 2004 My suggestion for the VA in Michigan would be Ann Arbor. My ex-father-in-law (now deceased) was being seen in Saginaw and was referred to Ann Arbor. Ann Arbor's VA hospital has doctors that are onstaff at the U of M medical center (it's just down the road). My father is retired Navy, lots of military experience in the family...ex-husband was in the Army for a while, that's how I made friends with the LT (now a Captain) who is now a VA rep.... I'm currently at work but will try to get in contact with my friend this weekend and get information to you as soon as possible. Start tracking down phone numbers and addresses for the congressional reps you will need to be in contact with.... Quote Link to comment Share on other sites More sharing options...
Kslilsis4 Posted January 10, 2004 Share Posted January 10, 2004 Thanks for the update! I was just looking for some kind of new treatment that might help my husband. He was basically told to go home and die also. I wont stand for that. David and I are heading to Tulsa, Oklahoma to the Cancer Treatment Center of America at the Southwest Regional Medical Center and I just checked to see if they do this specific procedure and guess what? They do!! It is so great to hear good news. I will keep everyone informed if this procedure works for David. Quote Link to comment Share on other sites More sharing options...
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