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
1/13/05 Confused and disoriented taken to ER and diagnosed with NSCLC,8 mets to brain and 1 to liver. Decadron helps with cognitive function
2/1,2/05 Gamma Knife to all 8 brain mets in 2 sessions.
Jeffrey is now "normal" again
2/06/05 begin chemo tacol,carboplatin
3/05/05 MRI Brain: all mets shrinking, no new mets
3/30/05 MRI Lung and Liver
4/01/05 MRI Brain: maximum shrinkage, no new mets
4/02/05 Off chemo, on Tarceva to try to get better results on liver. Primary is responding well
4/04/05 Begin planning Cyberknife for liver and lung
5/05/05 New met to brain. Scheduled Gamma Knife in 2 weeks
5/16/05 5 new mets gamma knifed
5/25/05 Scan review after 2 mths of Tarceva. No new mets but no shrinkage. Off Tarceva, on Alimta.
5/26/05 See Cyberknife surgeon
and PET scan
6/9/05 Scan results better than expected. NO activity anywhere but the 2 tumors we knew of. Liver tumor and lung tumor both showing good response to Alimta.
Cyberknife surgeon says its a GO!
06/15/05 2nd round Alimta/no side effects
7/06/05 3rd round Alimta/no side effects
7/08/05 Feeling side effects now with bouts of rage (3 days)
7/14/05 CT of liver and lung
7/25/05 2 Fiducials successfully inserted in liver. Radiologists mentions that tumor is much smaller than scan he got which was one month ago
7/27/05 Onc confirms dramatic shrinkage from Alimta in both lung and liver tumors. No chemo until after cyberknife.
08/1/05 2 fiducials implanted in liver tumor (tumor shrinkage down by 1/2 again)
8/3,4,5/05 Successful cyberknife on liver tumor
08/10/05 Alimta treatment #4
08/30/05 Clean brain scan..no mets
08/31/05 Alimta treatment #5
09/21/05 Final Alimta #6
09/28/05 Lung and Liver scan
10/12/05 Scan shows liver is NED and tumor in lung is down to 1.2 cm. doc decided to keep him on chemo and schedule Cyberknife for tumor in lung.
10/12/05 Alimta #7
10/13/05 Another follow up PET/CAT infusion scan at Mercy Hospital, Miami
11/2/05 Alimta #8
11/3/05 Brain Scan (3 month follow-up) CLEAN!
11/23/05 Liver scan clean
11//05 IMRT on host lung tumor for amonth 5 days a week
12/05 Receiving Carboplatin every Wednesday
01/03/06 Brain scan show no mets but some swelling which is causing some cognitive problems. Decadron for a week.
01/04/06 Last round of Carboplatin (only 5 rounds were prescribed)
01/11/06 Brown is new cyberknife surgeon. Yes to lung tumor removal. CAT Scan and PET scan
1/23/06 IMRT Dr. wants 6 more rounds..
2/1/06 PET Scan results no new activity anywhere
2/06/06 Lung biopsy lung collapses admitted to hospital
2/07/06 lung tumor NED
2/08/06 Fiducial placement
2/10/06 released from hospital
2/16/06 CT scan shows pneumothorax so back in hospital
2/18/06 Pneumothorax self corrected so back out of hospital
3/08/06 CT of lung (again)
3/10/06 Cyberknife of lung tumor
3/13,14/06 Cyberknife of lung tumor
5/9/06 Scans scheduled
5/17 PET scan clear
5/18 Brain MRI clear
7/20 Decadron causes 'road rage'incident
8/22 Brain Scan inconclusive
9/18 New scan shows mets (maybe)
9/19 Gamma Knife of 5 new "growths"
10/17 Brain Scan clean
10/24 Seizure while at work/in hospital
10/26 My father passed away while Jeff is still in hospital
10/27 Released from hospital
11/11 Jeff had another seizure at work
11/13 Brain scan to prepare for brain surgery
11/14 Surgery/biopsy shows no cancer in "matter" removed
11/16 Jeff released from hospital
11/24/06 Jeff back to work
12/28/06 Jeff has elective surgery to get new port for blood drawing and scan injections.
01/19/07 PET Scan (clear)
03/08/07 Brain scan (clear)
03/28/07 Lung and Liver scan (clear)
04/4/07 Oncologist (routine)
05/24/07 Colonoscopy (routine)
06/05/07 Brain scan shows evidence of necrotic growth
06/15/07 Brain PET Clear
08/20/07 Body PET Clear
11/01/07 Seizure at work due to low levels of Lamictal
01/16/08 Routine visit with Neurologist
01/20/08 Seizure at work ?? Admitted to Mount Sinai
01/21/08 Prescribed Lamictal for seizures that are a result of Gamma Knige to brain tumors 3 years ago.
06/22/08 Seizure medication increased due to additional episodes
08/19/08 Hospitalized dues to blood in vomit and urine after coming home ill from work
08/21/08 it Turned out to be minor-iriritation of the esophagus from seizure medication. Has to take a protector drug along with and that is it.
07/14/09-All is well. Jeff no longer sees the oncologist-just his primary.