Steve, my stepdad is still in the hospital...he got 4 rediation treatiments to the new area on his spine where they saw another mass..(really...its isolated throughout his hips). He was fine when he went in except for pain, but now he is not eating, and very very weak. THey also see some inflammation in his lungs and said maybe the very beginning of pneumonia, but got him on antibiotics right away. His vitals are good, he got a transfusion for his low platelets and he is drinking well. I have been very optimistic until last night when I went to see him and he looked really bad. Very skinny, very weak and hardly talking. He is coherent when he is awake, but is on a lot of meds for pain until the radiation kicks in and stops the hip pain. We are hopeful that he will rally and get through the radiation and be pain free...but he looks so sick! It was so hard to see him that way, when just a week ago he was eating full meals and got the news of substantial shrinkage of the lung tumor. Its so hard how this disease can be so up and down all the time. So, now my mom is looking into her options if the radiation doesnt work and what she needs to do to keep him comfortable. I have been praying so hard that he can come through this. THe fever is gone, so we are hoping that the inflammation is under control. He has NO lung congestion either. The docs say that the inflammation could be from the radiation...but who knows. He is also on Tarceva right now, and that is making his mouth really sore and dry. We just want him to pull through...please pray for Steve. We need him to get better and get those next 5 radiations next week and be able to get up and come home!! Thank you all for your support and advice.

Jenn

Jenn, words can't express how sorry I am for all your step dad, mom and you are going through. I know how awful it is to see someone you love so thin and weakened. I don't have personal experience with radiation but know from reading here that it can knock some people for a loop but they can rebound. I hope your step dad recovers soon, and the fever leaving is a positive sign, so he can resume treatment. Sending many healing thoughts his way.

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.

Praying!

_________________
God Bless You!

Tina

"Charlie didn't let life happen to him, he let life happen through him." Rev. Joe Green, 4/19/06

Husband Charlie, lived 27 months with stage IV NSCLC, adenocarcinoma,
51 yo at diagnosis; 53 at death
daughters now 19 & 13, niece 16
DX 01/09/04, Died 04/16/06 (Easter Sunday)
Treatments: (1) Carbo/Gemzar & radiation, (2) Navelbine and rad to neck lymph node, (3) Vanderbilt clinical trial of Targretin, (4)Alimta, (5) Tarceva, (6)Taxotere & rad to lymph node next to aorta, (7) Gemzar, (8)Etoposide, Carbo and Avastin with brachytherapy for bronchial tumors, and (9) CPT-11.
03/17/06 Charlie able to go with Rachel to get her "dream car"
04/16/06 Easter Sunday - taken to Heaven after having been able to go to our church drama on Saturday, helping me make Easter deviled eggs Sunday morning, enjoying a good family dinner and long talk with his dad in Florida
_________________________________
My Uncle Dave, SCLC, died in Feb. 2007.
My Dad, SCLC 06/11/07, 86 years old, quit smoking 32 years ago; 8/1/07 signed up with Hospice; passed to Heaven on 10/08/07.
Aunt Catherine, brain tumor, died in Feb. 2008

Feb. 28, 2008: My Mom likely has NSCLC
Mid-March: PET shows high SUVs; she is not healthy enough for biopsy or treatment; she falls and gets a bad leg wound and infection; aggressive daily painful treatments to save her leg.
June 10: CT shows stable disease; leg wound finally healing.
Sept: CT shows progression.
Late Dec. 2008: admitted to hospital for shortness of breath. Radiation started due to tumor pressing on her spine. Goes home on New Year's Day. Admitted to Hospice a few days later as palliative rad. continues for 3 weeks.
Late Jan. 2009: falls and breaks hip; repaired the next day and goes to rehab. facil. 4 days later...AMAZING!
Ups and downs at rehab. facil.
Transferred to Hospice House - wonderful people!
April 6, 2009 - my mom passes on with my brother and I by her side

Jenn, I am sorry about your step dad and all your family is going thru. My prayers are with you and your family at this time. I hope he gets to feeling better and can go home.

_________________
Dxed nslc stage2b,Aug.05 had right lung and 17 nodes removed which 2 had shown to be effected.August 27,05 had surgery redone again to stop bleeding. Started chemo sept.05 as a precaustioary. Have 3 month visit followups and have been ned so far and am hoping and praying to stay that way.Grade3 squamous cell type(T2,N1,Mo)tumor 10.5 cemtimeters,1 peribronchial node and 1 10R node involved

Jenn, I am so sorry for all you are going through. Many prayers, positive thoughs and vibes going out for Steve and your family.

Denise

_________________
[color=green]Tom 77 yrs young, Devoted Wife of 20 yrs Denise age 49 yrs, 6 kids, 5 granddaughters, 2 grandsons [/color]
__________________________________
[color=blue]1/29/08 Diagnosed with Stage IIIA NSCLC Squamous Cell with lymphnode and liver involvement.
1/29/13 - 5 Year survivor!!
1/29/12 -4 years Survivor!!
2/11/08 - 7/16/08 7 rounds of chemo w/ Carbo/Taxol
3/24/08 Restaged at IV.
4/28 CT Scan
5/5 Results day / Great scan w/ overall shrinkage.
5/12 MRI scheduled.
5/20 - Rad consult
5/28 - 7/16 Radiation to chest 35 rounds
8/18 - CT shows the lung tumor is down to 3.7cm x 2.7cm and liver lesion is GONE!! No signs of metastatic disease within the abdomen. No further treatment need at this time. Next scan in 3 months.
12/5 Hospitalized with pneumonia
12/6 CT Scan all clear. Tumor continues to shrink.
12/10 Home on 24/7 Oxygen. SOB continues.
5/18/09 PET SCAN ALL CLEAR!!!
5/2010 NED!!
4/2012 NED!!
10/2012 CT = Mixed bag of nuts
[/color]

[color=purple]Don’t be afraid your life will end, be afraid that it will never begin. [/color]

[color=red]READ TOM'S STORY @ [/color]
http://www.lungevity.org/l_community/viewtopic.php?t=37425

Prayers on the way.

_________________
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

Jenn-

Many, many prayers for your stepdad and your entire family. Please keep us updated on how things are going.

Hugs - Patti B.

Hi Jenn,

I too am sending you and your family prayers.

I wanted to add also that I have had mouth irritation and dryness with tarceva. There are several products out there that miight help. Oasis and Biotene brands of mouth wash for dry mouth work good and Biotene has a toothpaste that works too.

Keep us posted,

Wendy

_________________
3/2004 Stage 3a-adeno @ 39yrs
3/2004 Left Lung removed, 21 nodes +, paralyzed left vocal cord
3/2006 - New Mets - Spine T12 & Right ischium bone
1/2008 - New Met Spine t10, Possible thyroid

CHEMO
May-Jun 2004 Cisplatin/VP16, 6 days straight every 3 wks, 3 cycles
Jul-Aug 2004 Taxotere 1X every 3 wks, 3 cycles
Sep-April 05 Iressa trial daily
Jan 06-Jan 07 Avastin ev 3 weeks, tarceva daily, zometa ev 6 weeks
Feb 07-Jan 08 Tarceva daily
Jan 08-Present Avastin ev 3 wks + Tarceva Daily

Radiation May-Jun 04 chest 28 days
Feb 06 Spot radiation X 10 days to spine t12 and pelvis (ischium bone)

Thank you everyone for your kind word and prayers! We are still praying...I will be going there to visit him tomorrow and every night I just pray that the morning will bring any improvement....

This website has been so wonderful for me. I have kept my optimism by reading all the wonderful stories and advice...

Jenn

Prayers are being said Jenn!
Janet

_________________
Diagnosed at 47 years old - never smoked
3 amazing children, now 27, 25, and 24
Married 30 years

12/22/06 Diagnosed NSCLC Stage IV - Adnocarcinoma
Tumor in Rt Lung, 3 on Spine, one on the Pons of the brain
Radiation to the spine
Fractionated Linac Stereotactic Radiotherapy to the Pons of the brain

2/15/07 Start Tarceva 150 mg
4 1/2 years of "no progression of disease"

4/11/11 New mets on brain, Gamma Knife Radiation
Probable Leptomeningeal Disease.
Start "pulsing Tarceva" 1500mg 1xweek

7/11 - Brain mets swelling as an after effect of Gamma Knife, put on anti seizure meds, steroids.
New mets on spine and lung - watching.

9/11 - No new growth in Brain - more growth on spine and ribs. Back to Tarceva 100mg daily, adding Avastin every 3 weeks.

12/11 - Scans show no new growth, some mets stable, others have shrunk!

12/22/11 - 5 year survivor!!!!!

7/20/12 - scans show new growth in lungs and spine. Staying on Tarceva and Avastin and adding Alimta and Carboplatin.

10/12 Taken off Alimta and Carboplatin due to extreme side effects, continuing on Tarceva and Avastin - scans stable

Winter/13. Scans show growth again. Bones, lungs, lymph nodes, spleen. Time to look into clinical trials

4/13. Started clinical trial at Yale AP26113 by ARIAD, a "second generation Tarceva", side effects so far, diarrhea and nausea.

My story - http://lungevity.org/l_community/viewtopic.php?f=47&t=46162