I need your advise please. My husband has stage 3 (possibly 4 depending of further testing). Our insurance company (an HMO) has denied home health care as well as a social worker. The woman I spoke with says he is capable of transporting himself to doctors etc. Our primary physician disagrees and well as myself. He is unable to walk more than 2 ft without assistance, he sleeps in a recliner chair and uses a bedside comode and is transported to chemo in a wheel chair. I would like some advise from you as to how I can obtain a social worker. I heard that they can assist with ins companies and provide direction for assistance. We currently live in the high desert of California and there is no assistance avail from the american cancer society or any senior centers. Can you advise anything at all for us?

God Bless
Michelle

_________________
Jan 09 husband diagnosed with stage 3 adenocarcinoma.
Oct 09 passed peacefully at home after enduring a very difficult battle. I miss him dearly.

Michelle, does your oncology clinic or your hospital have a Patient Advocate? If so, perhaps they can assist you to get your HMO to approve the services you need.

Lynn

_________________
07/07: Diagnosed stage 4 SCLC. Carboplatin/VP-16, great scans. NED lung/hip, resolving liver.
11/07: Mixed scans. Repeat in 01/08.
01/08: Had seizures same week as scans. New mets: brain/adrenal glands. Active: lung/liver. In ICU overnight. Transferred to Hospice Wing next day.
01-28-08: Home on Hospice. Very critically ill.
01-31-08: Marked improvement. Sought second opinion. Yes, right diagnosis. Chose to not pursue further treatment.
02-05-08: Decided to fight w/Hycamtin.
04/08: Scans: Lung stable. Liver, adrenal gland, brain mets worse. Trying Gemzar.
05-12-08: CyberKnife for 4 of 6 brain mets. (Not WBR candidate-had radiation for non-hodgkin's lymphoma in 1984.)
05-26-08--06-10-08: Meds adjusted for increasing pain.
06-12-08: Fell down. Not injured.
06-19-08: Very wobbly. Brain MRI reveals innumerable lesions scattered throughout.
06-23-08: Hearing loss in right ear due to brain mets.
06-26-08: Not pursuing additional treatment.
07-24-08: Larry passed away at home at 8:10 pm, just the way he wanted. It was a gentle death. God's mercy is infinite.

Michelle-

I agree with Lynn - I am actually assigned a social worker through the cancer center I receive chemo at. If not, I would think your docs office would have some idea of who you can contact.

Good luck and keep us posted.

Hugs - Patti B.

_________________
My personal war against cancer:
Stage IV at diagnosis 9/29/06- told 12 months tops.......yeah, right!!!
5 rounds of radiation R hip
15 Whole brain radiation txs 7/20 - 8/7/09
8 weeks on oral Tarceva
To date, 80 IV chemo sessions and still counting
Chemos have consisted of:
Carbo/Taxol/Avastin
Avastin alone
Alimta
weekly Navalbine
weekly Gemzar, now on Gemzar every other week due to blood counts
All my veins have become inaccessible - port installed 12/30/09
Put on Alimta/Avastin as a combo
Currently on Taxotere, on 3 weeks off one

It was the doc's office that placed the requests initally to the insurance company requesting the social work and home health. They have denied all requests. Odd since they seem to think they know my husband so well and yet they have never seen him. The doctor himself said that we need the assistance and they denied it. I guess my next step is to final an appeal although I need a photocopy of the denial and I wonder if they'll even send it. Thanks for your advice everyone. I told them that I was coming to their office tomorrow and they said I would be denied access. I'm just at the end of my rope here folks. ;-(

_________________
Jan 09 husband diagnosed with stage 3 adenocarcinoma.
Oct 09 passed peacefully at home after enduring a very difficult battle. I miss him dearly.

Michelle, I'm grasping at straws over this.

It seems logical to me that your onc doc must have a copy of the denial. Otherwise, how would they know you were denied?

Also, the HMO should have sent you a copy of the denial. If they did not, then I don't see how they could refuse to send you a copy if you asked.

Another thing that comes to mind -- if your insurance comes through an employer, might they help you to navigate through the appeal process?

One last thing -- California seems to be quite progressive. Perhaps there is a state agency or ombudsman that could advocate for you with the HMO.


Who told you this and why do you want to go to their office? I'm asking because this is a harsh statement.

_________________
07/07: Diagnosed stage 4 SCLC. Carboplatin/VP-16, great scans. NED lung/hip, resolving liver.
11/07: Mixed scans. Repeat in 01/08.
01/08: Had seizures same week as scans. New mets: brain/adrenal glands. Active: lung/liver. In ICU overnight. Transferred to Hospice Wing next day.
01-28-08: Home on Hospice. Very critically ill.
01-31-08: Marked improvement. Sought second opinion. Yes, right diagnosis. Chose to not pursue further treatment.
02-05-08: Decided to fight w/Hycamtin.
04/08: Scans: Lung stable. Liver, adrenal gland, brain mets worse. Trying Gemzar.
05-12-08: CyberKnife for 4 of 6 brain mets. (Not WBR candidate-had radiation for non-hodgkin's lymphoma in 1984.)
05-26-08--06-10-08: Meds adjusted for increasing pain.
06-12-08: Fell down. Not injured.
06-19-08: Very wobbly. Brain MRI reveals innumerable lesions scattered throughout.
06-23-08: Hearing loss in right ear due to brain mets.
06-26-08: Not pursuing additional treatment.
07-24-08: Larry passed away at home at 8:10 pm, just the way he wanted. It was a gentle death. God's mercy is infinite.

Michelle-

You know, drastic times call for drastic measures. We have a TV channel here that has what's called "call for action". You tell that a problem and they will attempt to fix it. And some many places want to fix things once they know that the media is involved.

This totally sucks for you and I am so sorry. Do they not realize that cancer patients and their families have enough on their plates without this kind of crap???

Good luck!!!!

Hugs - Patti B.

_________________
My personal war against cancer:
Stage IV at diagnosis 9/29/06- told 12 months tops.......yeah, right!!!
5 rounds of radiation R hip
15 Whole brain radiation txs 7/20 - 8/7/09
8 weeks on oral Tarceva
To date, 80 IV chemo sessions and still counting
Chemos have consisted of:
Carbo/Taxol/Avastin
Avastin alone
Alimta
weekly Navalbine
weekly Gemzar, now on Gemzar every other week due to blood counts
All my veins have become inaccessible - port installed 12/30/09
Put on Alimta/Avastin as a combo
Currently on Taxotere, on 3 weeks off one

Larry's Wife said:

I poked around Google for a few minutes using a search for "california health insurance complaints" and found several state government agencies that should be able to help, depending on the specific type of insurance or HMO. Here's one:

Department of Managed Health Care, Help Center, 1-888-466-2219, http://www.hmohelp.ca.gov/

If that's not the correct agency, they should at least be able to refer you to the correct one. Please let us know what you find out. Aloha,

Ned

_________________
Ned is just my nickname, though it would be nice to merge it with the other meaning eventually...

Aloha means "Hello, goodbye, love, compassion, welcome, good wishes." It means belonging to others with a common humanity. It's defined better as a feeling in the heart than by words.

Dx NSCLC adenocarcinoma IIIb Sep 2006, now stage IV. Taxol+Carboplatin+Avastin 4 mo., Avastin 8 mo., Tarceva 16 mo., Alimta 12 mo. (sometimes combined with Cisplatin or Carboplatin), Navelbine since Feb 2010, 10 sessions of WBR in March 2011. See My Cancer Journey: viewtopic.php?p=351369#p351369 — UPDATED 03/05/2011.

Above left: Our golden retriever Rosie, who joined the family on 3/5/08 at the playful age of 2.

Below: Hannah, our golden companion 1994-2007.

I wonder if this might help you out!!

http://www.patientadvocate.org/help.php?p=186

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

I'm so sorry you are having to go through this. I agreed with Patti about the Patient Advocate. That's who helped me at MDACC. Does your husband go to a hospital or a Cancer Center of any size? I understand that most all hospitals have one. I'm thinking, though, if I went to our small Cancer Center in Key West, I would have probably had a hard time getting help.

Hope that one of the suggestions (like the media or Randy's or Ned's links) will help you out.

Judy in Key West

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.

To The top !!!

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

Randy, what "to the top?" I went back and reread Michelle's original post and still don't see what I missed. The post doesn't say to where he is transported for chemo. I read it and all the others before. Am I missing something else?

Judy in Key West

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.

Randy was just bumping this thread up, in hopes of finding some help for the original poster.

I guess the one thing I would mention is maybe trying www.livestrong.org, see if they have any input or advice. I would toss the net as far and wide as I can to any and all outreach programs. It seems terribly unacceptable that you are dealing with this as well as the cancer itself.

_________________
My sister Kelly was diagnosed with 3b NSCLC in May of 2007. A nodule on her adrenal gland has at times been thought to also be involved, but I, her surgeon, her radiation oncologist, and many oncologists I work with don't think it is. So we're going with that. She completed 5 rounds of carbo/taxol on a weekly schedule with concurrent radiation for 37 days. CT and PET showed nodes were clean but still residual activity in the tumor, which was reduced in size from 8x5 cm to 3x2cm. She attempted a lobectomy on 22 January 08 but the tumor resides a bit in the lower lobe in addition to the upper lobe, and the surgeon would not remove the entire left lung. She started Tarceva on 27 February 08. Her first scan showed decreased activity in the tumor and yet again, nothing new outside of that tumor. Her Dr. and I were actually kind of shocked! June '08 she had a total of 48 Gy of radiation via cyberknife. Her PET from 10 Sept '08 showed nothing new, the tumor size not really changed, but the SUV went down again, from 3.9 in May to 3.1, down from about 19 when this all started. She took a bit of a Tarceva holiday as we had some electrolyte issues due to not eating anything. She is currently back on it and taking 50 mg with tolerable toxicity. December '08 scan showed stable disease and yet again, less activity than before. April '09 scan actually said "area of hypermetabolic activity previously noted is not visualized today"! I could hardly believe my eyes and read it over and over. August and December '09 scans nearly identical! Now the June 2010 scan is just like the last ones - no uptake in the tumor, no new sites! Scan in January 2011 showed something on a rib on the contralateral side. Everyone in agreement that she broke a rib when she took a really bad fall a couple months ago. No one seems to think it is cancer, since the PET showed nothing in the lung or lymph nodes! Not moving to yearly scans yet though, so back in July! Our family really needed that good news as a month before we buried our 26 yr old nephew and are all still reeling from the shock and pain. July 2011 scan showed nothing new and she and the dr agreed to give her a drug break, so she went off Tarceva and so he wants to scan again in 3 months. There was a 3 mm nodule in the other lung and he didn't want to wait too long to scan given that and the no drug status. Scan in October of 2011 again showed nothing new, no growth, all is stable. The nodule in the other lung still listed as 2-3 mm. February 2012 scan was same as it ever was. :) Next scan is in August and she'll have gone one year without any treatment at that point. On May 19th it was 5 yrs from the day we heard she had lung cancer and we marked the occasion with a big party full of family and friends! She had a scan on Aug 24th and the results were more of the same, and marching orders from her oncologist that he doesn't need to see her for another year!

Yes To The top just puts the post at top of page for more attention and responses ! I hope Michelle gets her help in here !!

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

Went for chemo today and asked about the advocate. Sorry to say that they don't have one.

_________________
Jan 09 husband diagnosed with stage 3 adenocarcinoma.
Oct 09 passed peacefully at home after enduring a very difficult battle. I miss him dearly.

The doc does not have a copy because the ins company says it hasn't been generated yet. My husband is retired from Nasa and I have placed calls to them for assistance. And the reason I wanted to go to their office is because in order to file and appeal I must have a copy of the denial form and so far no luck getting it.

_________________
Jan 09 husband diagnosed with stage 3 adenocarcinoma.
Oct 09 passed peacefully at home after enduring a very difficult battle. I miss him dearly.

Thanks for all the suggestions etc. So far no luck with this problem but I will continue to research and see what I can do. I spoke with someone from the medical group today and for some unknown reason (which she refused to explain) she says my husband's physical condition is "fine". I told her that he is unable to walk more than 2 ft at a time without assistance etc....She just said to me....Well, Mrs XXXX "You are mistaken". I then let her know that I have begun tape recording all conversations. HA HA

Anyway, I have made up my mind about something. I absolutely refuse to beg anyone for anything anymore. From now on I shall be formally known as the "steam roller". I will process appeals....call newspapers....tv stations...what ever it takes so that my husband will get the care he needs. I figure that with Obama's plans for universal health care the news media might be interested.

_________________
Jan 09 husband diagnosed with stage 3 adenocarcinoma.
Oct 09 passed peacefully at home after enduring a very difficult battle. I miss him dearly.

Good for you, Michelle - give them hell!!!

What about calling your state senators office or state representative. Maybe they can get something moving!!!

Good luck !!

Hugs - Patti B.

_________________
My personal war against cancer:
Stage IV at diagnosis 9/29/06- told 12 months tops.......yeah, right!!!
5 rounds of radiation R hip
15 Whole brain radiation txs 7/20 - 8/7/09
8 weeks on oral Tarceva
To date, 80 IV chemo sessions and still counting
Chemos have consisted of:
Carbo/Taxol/Avastin
Avastin alone
Alimta
weekly Navalbine
weekly Gemzar, now on Gemzar every other week due to blood counts
All my veins have become inaccessible - port installed 12/30/09
Put on Alimta/Avastin as a combo
Currently on Taxotere, on 3 weeks off one

You go get them Michelle. I believe in diplomacy in the beginning but you are definitely getting the run around. I'm all for steam rolling at this point.

Judy in Key West

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.

Judy I see your a retired mental health counselor......HELP! ha ha

_________________
Jan 09 husband diagnosed with stage 3 adenocarcinoma.
Oct 09 passed peacefully at home after enduring a very difficult battle. I miss him dearly.

Wow, Michelle. I'm blown away by your dilemma. The answer is no, but you can't appeal it because the paperwork hasn't been generated yet? That's just not right!!

Yes, you now must be a barracuda and rip them up!!

You know, this reminds me of the plot of Matt Damon's movie "The Rainmaker" — seriously! Damon plays the role of a young law school graduate who, as his first big case, takes on an established health insurance company whose modus operandi is ripping off their clients. With the help of a gutsy associate (Danny DeVito) and a sympathetic judge, he ripped that company a new one! I picked up the DVD in the $5 bin of our local Walmart, and have watched it 3 times.

Go get em, Michelle! This is ridiculous.

Ned

Michelle,
I know you probably already did this, but there were a couple of responses to your question at cancergrace.org

Dana

_________________
Mar. '08-Routine xray found Spot tip of upper left lung.
Dr orders CAT. growth confirmed.
Sent to Pulmonolgist who orders PET.
Pet results-my spot lights up like a Christmas tree.
Can't reach spot for biopsy referred to surgeon.
Surgical Biopsy scheduled for Apr. 28th '08
Apr. '08-Surgeon found SCLC, removed upper left lobe and surronding lymph nodes.
Everything biopsied no other cancer found, declaired NED by surgeon on Apr.28th '08
ONC wants me to start adjuvant therapy.
June '08-MRI brain scan and CAT NED
Chemo cisplatin/vp16 3 days every 3 weeks 4 sessions ended Aug. '08
Partial hearing loss due to Cisplatin
Sept. '08 1st CAT after treatment NED
Dec. '08-2nd CAT after treatment NED
Apr. '09-MRI (brain) and CAT NED
Aug. '09-CAT NED
Dec. '09-CAT and MRI NED
Apr. '10-CAT and MRI NED
Oct. '10-CAT and MRI NED
Jan. '11-XRay NED
Oct. '11-CAT NED

Michelle,

I have no advice that hasn't already been given but I just wanted to say how sorry I am that you are going through this at a time when your focus and attention should be on your husband, not worrying about his insurance. How dare they say based on what they are reading in some book what your husband's condition is?

Someone suggested going to your congressman/woman and I would sure give that a try. I've said from the beginning that I have been lucky with Gene's insurance and hearing your story makes me realize how unbelievably lucky we are! I will keep you both in my thoughts and prayers...this has to work out for you!

A bit of an update I guess.....I filed an emergency appeal with the insurance company this morning on the phone ( expedited with 3 day response) and I also contacted the Dept of Managed Health Care for the State of California. The DMHC says I need a copy of the denial in order to proceed.....so guess what? I'm getting into my car and driving over the the same medical group that said they would call security on me if I show up. If you don't hear back soon, perhaps it will be because I'm in handcuffs? ha ha As soon as someone comes to stay with my husband....I'm on my way!

_________________
Jan 09 husband diagnosed with stage 3 adenocarcinoma.
Oct 09 passed peacefully at home after enduring a very difficult battle. I miss him dearly.

YOU GO, GIRLFRIEND!!!!!

If they threaten to call the cops on you, tell them your one call will be to the news media!!!! NOONE deserves the treatment you have been given!!!! I am beginning to not like the state of California at all!!!!

Good luck!!!!

Hugs - Patti B.

_________________
My personal war against cancer:
Stage IV at diagnosis 9/29/06- told 12 months tops.......yeah, right!!!
5 rounds of radiation R hip
15 Whole brain radiation txs 7/20 - 8/7/09
8 weeks on oral Tarceva
To date, 80 IV chemo sessions and still counting
Chemos have consisted of:
Carbo/Taxol/Avastin
Avastin alone
Alimta
weekly Navalbine
weekly Gemzar, now on Gemzar every other week due to blood counts
All my veins have become inaccessible - port installed 12/30/09
Put on Alimta/Avastin as a combo
Currently on Taxotere, on 3 weeks off one

Well, went over to the office and it was not pleasant. They gave me a copy saying that 10 nursing visits have been approved HOWEVER it was dated today which is July 8th stating that all visits must be completed no later then July 15th. That's it.....I'm finished begging for anything. I took a few hours once I came home and have decided that I will sell anything and everything we own to take care of him myself. We are lucky in the respect that our home is fully paid for, but sad to say it's only worth half now. But, I don't care....the one and only thing that matters is my husband. I'm thinking that I will call private companies and just go from there. I feel like they are trying to force me my denials into calling hospice, but geeeeeeez we just started chem two months ago and don't even have a progress report yet. I don't know.....all I can say is that I'm trying.

_________________
Jan 09 husband diagnosed with stage 3 adenocarcinoma.
Oct 09 passed peacefully at home after enduring a very difficult battle. I miss him dearly.

In addition to this one...

http://www.patientadvocate.org/help.php?p=186

Maybe this link will prove helpful??

http://clarkhoward.com/

Clark is a consumer advocate and knows a lot or finds out a lot about anything. I don't know if it will help or not but worth a shot though!!

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

Thanks Randy....I'll check these sites out and see if they can help in anyway.

Michelle

_________________
Jan 09 husband diagnosed with stage 3 adenocarcinoma.
Oct 09 passed peacefully at home after enduring a very difficult battle. I miss him dearly.

Michelle,

I had started a reply back yesterday saying that I wondered if this was their way of "forcing" you into Hospice...Just wrong. I actually work for an organization that includes a hospice home care and solace center. This is not how someone needs to decide that is the level of care they need.

Most ins companies hhave nurses on staff who work as patient advocates...perhaps this is your first route.

Initially the insurance co refused to pay for half of my mother's double mastechtomy because she only had one tumor...the patient advocate got them to pay for the whole thing.

Also, the hospital SHOULD have someone on staff who can help you as part of their programs.

Way to go Michelle!
At least you got 10 visits out of them! Now you just need to keep going!!! Go GET 'EM!!!!!!

Dana

_________________
Mar. '08-Routine xray found Spot tip of upper left lung.
Dr orders CAT. growth confirmed.
Sent to Pulmonolgist who orders PET.
Pet results-my spot lights up like a Christmas tree.
Can't reach spot for biopsy referred to surgeon.
Surgical Biopsy scheduled for Apr. 28th '08
Apr. '08-Surgeon found SCLC, removed upper left lobe and surronding lymph nodes.
Everything biopsied no other cancer found, declaired NED by surgeon on Apr.28th '08
ONC wants me to start adjuvant therapy.
June '08-MRI brain scan and CAT NED
Chemo cisplatin/vp16 3 days every 3 weeks 4 sessions ended Aug. '08
Partial hearing loss due to Cisplatin
Sept. '08 1st CAT after treatment NED
Dec. '08-2nd CAT after treatment NED
Apr. '09-MRI (brain) and CAT NED
Aug. '09-CAT NED
Dec. '09-CAT and MRI NED
Apr. '10-CAT and MRI NED
Oct. '10-CAT and MRI NED
Jan. '11-XRay NED
Oct. '11-CAT NED

I wish I could get all 10 of the visits....the approval says "all" must be used within 7 days......impossible! They knew exactly what they were doing when they generated their so-called approval. I will most likely only be able to get one visit before July 15th.

_________________
Jan 09 husband diagnosed with stage 3 adenocarcinoma.
Oct 09 passed peacefully at home after enduring a very difficult battle. I miss him dearly.

Hey!
Maybe you could talk to the people that will be working with your husband and tell them the whole situation. Could they just go ahead and bill all 10 visit between now and the 15th? They would get paid and you could see if they would spread the visit out a little more? Just a thought!

Dana

_________________
Mar. '08-Routine xray found Spot tip of upper left lung.
Dr orders CAT. growth confirmed.
Sent to Pulmonolgist who orders PET.
Pet results-my spot lights up like a Christmas tree.
Can't reach spot for biopsy referred to surgeon.
Surgical Biopsy scheduled for Apr. 28th '08
Apr. '08-Surgeon found SCLC, removed upper left lobe and surronding lymph nodes.
Everything biopsied no other cancer found, declaired NED by surgeon on Apr.28th '08
ONC wants me to start adjuvant therapy.
June '08-MRI brain scan and CAT NED
Chemo cisplatin/vp16 3 days every 3 weeks 4 sessions ended Aug. '08
Partial hearing loss due to Cisplatin
Sept. '08 1st CAT after treatment NED
Dec. '08-2nd CAT after treatment NED
Apr. '09-MRI (brain) and CAT NED
Aug. '09-CAT NED
Dec. '09-CAT and MRI NED
Apr. '10-CAT and MRI NED
Oct. '10-CAT and MRI NED
Jan. '11-XRay NED
Oct. '11-CAT NED

I know I juggled dates for people when I was a counselor. Hey the insurance companies are stealing people blind. My clients were who counted. And like you say, I got paid and the client got the services he/she was paying for.

Judy in Key West

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.

I'm trying to remember how old your husband is - over 65? Just because you have private insurance doesn't mean you can't use Medicare as well. If I am right, here's a link to their policy. If you aren't eligible, someone else might find it helpful.
http://www.medicare.gov/Publications/Pubs/pdf/10969.pdf
[/url]

I think I've finally gotten them GOOD and I have all of you to thank. According to Federal Law....all HMO's must provide a medicare patient with the exact same benefits. Now....from what I have been told today from State and Federal contacts is that Blue Cross had created a major problem for themselves by denying my husband home health care that his primary care physician stated he needed. (So far I have that in writing). The only issue I am running into now is "written proof" of the denial itself in order to proceed with my complaint which they require. The medical group has danced around my request for a few days now. I am hoping that the primary care physician will be able to provide that to me. I didn't bother him today because the poor man has food poisoning. ( oh good lord...I hope he doesn't need assistance from the insurance group :-O) I will indeed call Monday morning and see what I can find out. I would have asked his staff to send me the request, but they don't quite understand what I need so waiting till Monday is best.

Thanks and Good Bless all of you for your help!!!!!!!!!!!! Now I'm off to have a very well deserved glass of wine!!!!!!!!!!!!!!!!!!

_________________
Jan 09 husband diagnosed with stage 3 adenocarcinoma.
Oct 09 passed peacefully at home after enduring a very difficult battle. I miss him dearly.

Wow Michelle, it's been a tough run but the checkered flag is in view. Good for you girl. Hope you enjoyed that glass of wine (or maybe two or three would have been o.k. lol)

Judy in Key West

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.

Yeah Michelle I knew you would kick their *ss

_________________
Mar. '08-Routine xray found Spot tip of upper left lung.
Dr orders CAT. growth confirmed.
Sent to Pulmonolgist who orders PET.
Pet results-my spot lights up like a Christmas tree.
Can't reach spot for biopsy referred to surgeon.
Surgical Biopsy scheduled for Apr. 28th '08
Apr. '08-Surgeon found SCLC, removed upper left lobe and surronding lymph nodes.
Everything biopsied no other cancer found, declaired NED by surgeon on Apr.28th '08
ONC wants me to start adjuvant therapy.
June '08-MRI brain scan and CAT NED
Chemo cisplatin/vp16 3 days every 3 weeks 4 sessions ended Aug. '08
Partial hearing loss due to Cisplatin
Sept. '08 1st CAT after treatment NED
Dec. '08-2nd CAT after treatment NED
Apr. '09-MRI (brain) and CAT NED
Aug. '09-CAT NED
Dec. '09-CAT and MRI NED
Apr. '10-CAT and MRI NED
Oct. '10-CAT and MRI NED
Jan. '11-XRay NED
Oct. '11-CAT NED

Good Job, Michelle!!!

They know not to mess with you again!!!!

Hugs - Patti B.

_________________
My personal war against cancer:
Stage IV at diagnosis 9/29/06- told 12 months tops.......yeah, right!!!
5 rounds of radiation R hip
15 Whole brain radiation txs 7/20 - 8/7/09
8 weeks on oral Tarceva
To date, 80 IV chemo sessions and still counting
Chemos have consisted of:
Carbo/Taxol/Avastin
Avastin alone
Alimta
weekly Navalbine
weekly Gemzar, now on Gemzar every other week due to blood counts
All my veins have become inaccessible - port installed 12/30/09
Put on Alimta/Avastin as a combo
Currently on Taxotere, on 3 weeks off one

Filed an appeal with Blue Cross with 3 day process time. Then I have been in contact with the Dept of Managed Health Care...HICAP advocacy as well as Patientadvocate.org.

While waiting I took my husband for a scheduled ultrasound this morning. He was not happy about it since he didn't sleep well last night and could not eat before the procedure. Well, we finally got there only to be told the medical group has "denied" the procedure. uggghhhhhhhhh

Upon leaving this place I decide to pick of his medications from the pharmacy......bet you can't guess huh? Again DENIED...and again I'm putting another $600 on my credit card.

Still no return phone calls from them about the unpaid anesthesia bills or the ambulance trips.

I'm actually holding up well under the circumstances. No tears this time...just sheer anger with these idiots. Maybe I'll have to take another rider over there this week. I wonder if they'll make me go outside to talk again! ha ha This time I'm prepared with a tape recorder!

It's hard now, but I know we'll come out of all this just fine. Doubt those people at the medical group will though :-O

_________________
Jan 09 husband diagnosed with stage 3 adenocarcinoma.
Oct 09 passed peacefully at home after enduring a very difficult battle. I miss him dearly.

(((((((Michelle)))))))

THIS IS ABSOLUTELY Bull-@@@@!!!!!!!!!!!!!!

How can they do this??? I am so mad right now I feel like coming out there and denying them a few things!!!!

Once again, I think calling your state representative or congressperson may help. I have known many people who got things done that way.

Glad you are in fighting mode - YOU ROCK!!!!!!! Don't let the idiots get you down!!!

Hugs - Patti B.

_________________
My personal war against cancer:
Stage IV at diagnosis 9/29/06- told 12 months tops.......yeah, right!!!
5 rounds of radiation R hip
15 Whole brain radiation txs 7/20 - 8/7/09
8 weeks on oral Tarceva
To date, 80 IV chemo sessions and still counting
Chemos have consisted of:
Carbo/Taxol/Avastin
Avastin alone
Alimta
weekly Navalbine
weekly Gemzar, now on Gemzar every other week due to blood counts
All my veins have become inaccessible - port installed 12/30/09
Put on Alimta/Avastin as a combo
Currently on Taxotere, on 3 weeks off one

OMG Michelle, I am so sorry. I'm glad you are holding up like you are though. Don't know if I could manage to not totally lose it with those people. Oh, you probably have lol. Hang in there and come here and vent whenever you can.

Judy in Key West

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.

PATTI! OMGGGGG When I read your post I thought....what the heck...try. Within an hour look at the email response I got:

Good Afternoon Michelle,



Senator Runner asked me to contact you regarding your husband’s medical care. I would like to direct you to the Patient Advocate’s Office in the Department of Managed Health Care. The website is

http://www.opa.ca.gov/ Their telephone number is 1-866-466-8900. We have found them to be very helpful in the past. If you have any other questions please feel free to call me at (661) 729-6232.



Regards,



Lisa



Lisa Moulton, District Director

Office of Senator George Runner

848 Lancaster Blvd.

Lancaster, CA 93534

P-( 661) 729-6232

F-( 661) 729-1683

And Judy.....don't let my posts fool ya but I must admit that I'm better than I was last week....this is war! ha ha No more tears out of me with these people!

_________________
Jan 09 husband diagnosed with stage 3 adenocarcinoma.
Oct 09 passed peacefully at home after enduring a very difficult battle. I miss him dearly.

OMG Michelle-

I am so happy. Maybe they can even investigate these jerks. Just because you have the guts and the fight to go after them doesn't mean everyone does. Just think of the poor people who just gave up!!!

Let us know what happens next!!!!! Its like a soap opera on TV, isn't it. But I know you will come out the victor!!!! They will be sorry they ever messed with you!!!!

Hugs - Patti B.

_________________
My personal war against cancer:
Stage IV at diagnosis 9/29/06- told 12 months tops.......yeah, right!!!
5 rounds of radiation R hip
15 Whole brain radiation txs 7/20 - 8/7/09
8 weeks on oral Tarceva
To date, 80 IV chemo sessions and still counting
Chemos have consisted of:
Carbo/Taxol/Avastin
Avastin alone
Alimta
weekly Navalbine
weekly Gemzar, now on Gemzar every other week due to blood counts
All my veins have become inaccessible - port installed 12/30/09
Put on Alimta/Avastin as a combo
Currently on Taxotere, on 3 weeks off one

If ya tape the conversation make sure to tell them !! They can tape your conversation on the phone so you should be able to do the same thing!!!!

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

Michelle, I know all your friends here on the siti (and off) are proud of you. It's not easy to buck the system. It takes a lot of energy. Good for you! Keep us posted. We all want to see the "little guy" win.

Judy in Key West

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.

Michelle, WOW! Great work on your husband's behalf. I can't imagine the added stress of being denied healthcare you need. You keep fighting girl....we are proud of you!

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

_________________
Husband, Jeffrey
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
09/07/07 NED
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.

For ALL! Thanks for your advice....I will never EVER stop fighting for my husband. And thanks to all of you for your help and support. I can honestly say that if it weren't for all of you I would have had a total breakdown by now.

I got a call today regarding the complaint I filed with the Dept of Managed Health Care. They said that they handle laws broken with Ins Companies for "non seniors" and that I need to go somewhere else. They say that based on information provided to them, a Federal Law has been broken. So, I will contact this other place and keep all of you updated. There are so many issues in this thread that I think are important to ANYONE who has issues with insurance companies. I hope that we can continue this saga I have going so that others can benefit from it as well.

And a special note to Trish...I read about your husbands journey and my heart goes out to you...You've had a long run of this terrible disease and I wish you....just as everyone here HOPE, STRENGTH AND COURAGE....THEN....SURVIVAL.

_________________
Jan 09 husband diagnosed with stage 3 adenocarcinoma.
Oct 09 passed peacefully at home after enduring a very difficult battle. I miss him dearly.

The phone wouldn't stop ringing yesterday! First call was from the insurance company regarding my appeal. It was ruled in our favor YEAAAAA ..... Then Medicare called saying that a formal investigation has begun into the medical group........then the nursing group called and said they received approval for eight weeks of 2Xweek nursing and 2Xweek physical therapy! The nurse was here within 2 hours and gave my husband a great physical checkup.

I am BEYOND thrilled and I owe it all to the people here who have given such great advice and soooooooo much emotional support. I can't thank you enough. Finding all of you has been wonderful.

Oh.....and one experience we had on chemo day I wanted to share with all of you. When we arrived it took a while of course to get my husband out of the car, into the wheelchair and over to the elevator door. Well, guess what? The elevator was broken down and the only way up to the chemo room was to climb two flights of stairs! I just kept thinking....oh my GOD! Now what? Well, the chemo nurse told me that it had been broken for two days and suggested we re-schedule. That was NOT acceptable to me...I know it wasn't their fault because they had been calling and calling for service. SOOOOOOOOOO I pulled my cell phone out and called 911. They sent paramedics out who put my husband on the gurney and carried him up those two flights of stairs and into the chemo room. The patients who were there (that were able to walk up there) all applauded and said.....Great Job! There was no way I was going to have him miss an appt that is so physically draining for him to get to in the first place.

I know some might think that by calling 911 it was extreme but I don't agree. We have been fighting so darn hard for everything in this journey of ours that I'm at the point now where I won't let anything stop us from saving his life.....not even a lousy elevator!

Thanks again everyone!

_________________
Jan 09 husband diagnosed with stage 3 adenocarcinoma.
Oct 09 passed peacefully at home after enduring a very difficult battle. I miss him dearly.

Oh my heavens Michelle! You are soooo FREAKING AWESOME!!!!!! GREAT JOB!!!! It is a pleasure to know you!!!

Dana

_________________
Mar. '08-Routine xray found Spot tip of upper left lung.
Dr orders CAT. growth confirmed.
Sent to Pulmonolgist who orders PET.
Pet results-my spot lights up like a Christmas tree.
Can't reach spot for biopsy referred to surgeon.
Surgical Biopsy scheduled for Apr. 28th '08
Apr. '08-Surgeon found SCLC, removed upper left lobe and surronding lymph nodes.
Everything biopsied no other cancer found, declaired NED by surgeon on Apr.28th '08
ONC wants me to start adjuvant therapy.
June '08-MRI brain scan and CAT NED
Chemo cisplatin/vp16 3 days every 3 weeks 4 sessions ended Aug. '08
Partial hearing loss due to Cisplatin
Sept. '08 1st CAT after treatment NED
Dec. '08-2nd CAT after treatment NED
Apr. '09-MRI (brain) and CAT NED
Aug. '09-CAT NED
Dec. '09-CAT and MRI NED
Apr. '10-CAT and MRI NED
Oct. '10-CAT and MRI NED
Jan. '11-XRay NED
Oct. '11-CAT NED

Michelle-

You did REAL good, girlfriend!!!!!!!!

Hugs - Patti B.

_________________
My personal war against cancer:
Stage IV at diagnosis 9/29/06- told 12 months tops.......yeah, right!!!
5 rounds of radiation R hip
15 Whole brain radiation txs 7/20 - 8/7/09
8 weeks on oral Tarceva
To date, 80 IV chemo sessions and still counting
Chemos have consisted of:
Carbo/Taxol/Avastin
Avastin alone
Alimta
weekly Navalbine
weekly Gemzar, now on Gemzar every other week due to blood counts
All my veins have become inaccessible - port installed 12/30/09
Put on Alimta/Avastin as a combo
Currently on Taxotere, on 3 weeks off one

Before I met all of you and this had happened I probably would not had what it takes to fight them. So, if anyone deserves credit, it's all of my friends here.

_________________
Jan 09 husband diagnosed with stage 3 adenocarcinoma.
Oct 09 passed peacefully at home after enduring a very difficult battle. I miss him dearly.

I don't think anyone here would think calling 911 was extreme. Good on ya for thinking that fast on your feet! And just all around WAY TO GO! This was a hard won battle for you, but you clearly were not taking no for an answer. I like that! Great to read this update!

_________________
My sister Kelly was diagnosed with 3b NSCLC in May of 2007. A nodule on her adrenal gland has at times been thought to also be involved, but I, her surgeon, her radiation oncologist, and many oncologists I work with don't think it is. So we're going with that. She completed 5 rounds of carbo/taxol on a weekly schedule with concurrent radiation for 37 days. CT and PET showed nodes were clean but still residual activity in the tumor, which was reduced in size from 8x5 cm to 3x2cm. She attempted a lobectomy on 22 January 08 but the tumor resides a bit in the lower lobe in addition to the upper lobe, and the surgeon would not remove the entire left lung. She started Tarceva on 27 February 08. Her first scan showed decreased activity in the tumor and yet again, nothing new outside of that tumor. Her Dr. and I were actually kind of shocked! June '08 she had a total of 48 Gy of radiation via cyberknife. Her PET from 10 Sept '08 showed nothing new, the tumor size not really changed, but the SUV went down again, from 3.9 in May to 3.1, down from about 19 when this all started. She took a bit of a Tarceva holiday as we had some electrolyte issues due to not eating anything. She is currently back on it and taking 50 mg with tolerable toxicity. December '08 scan showed stable disease and yet again, less activity than before. April '09 scan actually said "area of hypermetabolic activity previously noted is not visualized today"! I could hardly believe my eyes and read it over and over. August and December '09 scans nearly identical! Now the June 2010 scan is just like the last ones - no uptake in the tumor, no new sites! Scan in January 2011 showed something on a rib on the contralateral side. Everyone in agreement that she broke a rib when she took a really bad fall a couple months ago. No one seems to think it is cancer, since the PET showed nothing in the lung or lymph nodes! Not moving to yearly scans yet though, so back in July! Our family really needed that good news as a month before we buried our 26 yr old nephew and are all still reeling from the shock and pain. July 2011 scan showed nothing new and she and the dr agreed to give her a drug break, so she went off Tarceva and so he wants to scan again in 3 months. There was a 3 mm nodule in the other lung and he didn't want to wait too long to scan given that and the no drug status. Scan in October of 2011 again showed nothing new, no growth, all is stable. The nodule in the other lung still listed as 2-3 mm. February 2012 scan was same as it ever was. :) Next scan is in August and she'll have gone one year without any treatment at that point. On May 19th it was 5 yrs from the day we heard she had lung cancer and we marked the occasion with a big party full of family and friends! She had a scan on Aug 24th and the results were more of the same, and marching orders from her oncologist that he doesn't need to see her for another year!

Michelle, this is beyond awesome! I went back to the top of the thread and read the whole thing from the beginning, and I'm not ashamed to say that it brought tears of joy to my eyes. What a great "HOW TO" lesson — it should be required reading!

Randy, I see you're one of the moderators of this forum. How about making it a Sticky?

Ned

Michelle, I am beyond impressed with your tenacity and ingenuity. I would never have thought to call 911. But I'm going to take your little trick and put it in my back pocket, just in case the need ever arises.

You are one awesome lady!!

Lynn

Michelle,

You are fabulous! The 911 call was great. When it comes to over loved ones getting the best care possible, we do what we have to do.

Keep the faith,
Jean

Always remember this ! We have one loved one to fight for. And the Little Guy has rights also!!!!

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

I just read this thread -- and must admit I am speechless. I can't imagine having to go through all of this just to get the coverage that you have paid for and deserve. The 911 call was brilliant. Would never have occurred to me. Am saying prayers that after all this, things will now go smoothly and all fall into place.

Diane

_________________
3/98 Dx squamous cell NSCLC 2a at 50 yrs
4/98 Left lung removed, no chemo/rad
8/08 Persistent cough and shortness of breath, first appt. with pulmonary doc 11/4/08
11/08 X-ray and CT show tumor in right lung. PET scan confirms tumor, shows no apparent spread
12/08 CT/needle biopsy shows squamous cell NSCLC IIIB, doctors don't seem to agree if its a new cancer or recurrence - but onc believes it is a new one
12/08 Start concurrent radiation/chemo, Cisplatin/Etoposide
1/09 Chemo switched to Carbo/Taxol due to intolerance of Cisplatin
2/09 Radiation completed
3/09 Chemo completed
5/09 CT shows spot where tumor was likely/hopefully scar tissue
6/09 Begin Lucanix trial
9/09 CT scan - stable
12/07/09 CT scan - stable
3/1/10 CT scan - stable
6/1/10 CT scan - stable - begin 2nd year of trial
8/23/10 CT scan - stable
10/25/10 CT scan - stable
1/20/11 CT scan - stable
4/25/11 CT scan - stable - completed drug portion of trial, now follow-up with 3-mo scans
8/1/11 CT scan - stable
10/24/11 CT scan - stable. At my request, switching to 6 mo scans.
4/24/12 CT scan - stable.
10/30/12 CT scan - stable.
2/26/13 CT scan - stable

Avatar is with 10-mo-old grandson Ethan at Xmas

I'm a sticky? Does that make me famous?

_________________
Jan 09 husband diagnosed with stage 3 adenocarcinoma.
Oct 09 passed peacefully at home after enduring a very difficult battle. I miss him dearly.

Yes, and that's only the start of it!

Ned

Michelle,
A sticky not only makes you famous, it makes you FABULOUS!!!!!

Dana

_________________
Mar. '08-Routine xray found Spot tip of upper left lung.
Dr orders CAT. growth confirmed.
Sent to Pulmonolgist who orders PET.
Pet results-my spot lights up like a Christmas tree.
Can't reach spot for biopsy referred to surgeon.
Surgical Biopsy scheduled for Apr. 28th '08
Apr. '08-Surgeon found SCLC, removed upper left lobe and surronding lymph nodes.
Everything biopsied no other cancer found, declaired NED by surgeon on Apr.28th '08
ONC wants me to start adjuvant therapy.
June '08-MRI brain scan and CAT NED
Chemo cisplatin/vp16 3 days every 3 weeks 4 sessions ended Aug. '08
Partial hearing loss due to Cisplatin
Sept. '08 1st CAT after treatment NED
Dec. '08-2nd CAT after treatment NED
Apr. '09-MRI (brain) and CAT NED
Aug. '09-CAT NED
Dec. '09-CAT and MRI NED
Apr. '10-CAT and MRI NED
Oct. '10-CAT and MRI NED
Jan. '11-XRay NED
Oct. '11-CAT NED

Too bad we don't give you money for it, huh!!!!

_________________
My personal war against cancer:
Stage IV at diagnosis 9/29/06- told 12 months tops.......yeah, right!!!
5 rounds of radiation R hip
15 Whole brain radiation txs 7/20 - 8/7/09
8 weeks on oral Tarceva
To date, 80 IV chemo sessions and still counting
Chemos have consisted of:
Carbo/Taxol/Avastin
Avastin alone
Alimta
weekly Navalbine
weekly Gemzar, now on Gemzar every other week due to blood counts
All my veins have become inaccessible - port installed 12/30/09
Put on Alimta/Avastin as a combo
Currently on Taxotere, on 3 weeks off one

I ahve put up a few stickies in my time and no money is exchanged !!! Glad all is well though thats the important thing !

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

Michelle, that sticky not only makes you famous and fabulous, but it will give courage and encouragement to others who are fighting the system for their rights or the rights of their loved one. Way to go! I agree, the 911 call was brilliant.

Judy in Key West

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.

Michelle - I am waay behind on this post but you go girl! What an inspiration. Tenacity is a gift.

One thought I have is transportation and some of the more mundane things you need to do while dealing with all of this stuff - grocery shopping, help with appointments, etc. We have a disability resource center here that helps physically and mentally challenged individuals that include cancer patients. I haven't needed them yet but they hook folks up with volunteers who are willing to help with things that the @#$% insurance companies don't cover.

Thoughts and prayers for you both.

Kathleen

_________________
Husband: Glenn, Stage IV Adenocarcinoma, both lungs, spot in left hip. Former heavy smoker. Quit smoking August '08!

11.18.09 Started maintenance chemo - alimta only.
10.30.09 - One year since we found out Stage IV. Cancer is STABLE with no progression!
August - October - long SLOW recovery. From bedridden to a walker to a cane, and now Glenn is walking and driving!
7.31.09 PET Scan shows improvement EVERYWHERE!
May-August 09 - MANY trips to the hospital for side effects from platinum chemo - autonomic neuropathy is the worst. Went to inpatient rehab.
4.15.09 Improvement with mets. 2 more rounds of Cisplatin/Gemzar/Avastin combo
2.12.09 Start Cisplatin,Gemzar, Avastin combo
1.29.09 PET Scan showed spot in hip sliightly larger and two new small spots in ribs
1.30.09 Bronchoscopy showed no new cancer in lungs
1.19.09 - follow-up CT Scan, two tumors shrinking, signs of lung infiltration - bronchoscopy scheduled
11.13.08 - Chemo begins- carboplatin, taxol, avastin, 3 wk cycles
10.31.08 - PET Scan - three masses, hot spots around pulmonary nodules, 1 hot spot in left hip
10.24.08 - Needle Biopsy - positive for adenocarcinoma
10.10.08 - Bronchoscopy - negative for cancer, infection
9.27.08 - Abnomal chest CT
9.25.08 - Abnormal Chest x-ray
9.24.08 - PCP for pneumonia
8.08 - feet swelling, both feet

Having a disability resource center would be just wonderful. I will look into that but am doubtful it is available here. I can't even get a return phone call from the ACS here I'm happy you haven't needed the resource center and I hope you won't need to call at all and your hubby has many many years!

Thanks!

_________________
Jan 09 husband diagnosed with stage 3 adenocarcinoma.
Oct 09 passed peacefully at home after enduring a very difficult battle. I miss him dearly.