Well it's been a few years but unfortunately I am back and hoping to get a little feed back on my next step. Last month at my check up I found out that my met in my lower back was active again and we needed to do 10 days of radiation. I've since completed the radiation but the Doc. also wanted a PET scan done. Upon further review my other met in my pelvis also showed some uptake. His recommendation now is either trying the alimta again once every 3 weeks along with zometa every other treatment or a fairly new drug that I'm finding out is pretty incredible called crizotinib. What I want to know from you my fellow experts who have to go thru this hell is this crizotinib as effective and easy to handle as they say? Also and I thought this was kind of odd but my Doc. said he sent my tumor out almost a year ago and that the crizotinib worked on it. Do they normally do this?

_________________
Diagnosed 11-04 IIIa Adenocarcinoma age 34
Clinical trial phase 1 of paclitaxel,carboplatin and osi-774(tarceva) with concurrent accelerated hyperfractionation radiation followed by maint. therapy with tarceva. The trial was broken down in two courses the first being 3 weeks of combo chemo and 12 days of twice a day radiation and tarceva each day. After was approved for surgery 2-05 rt pneumonectomy, 4 nodes and a rib. Recovered from surgery about 6 weeks and started course 2 which was the same as 1. Continued tarceva about another year and a half. Go every 6 months for check up 3 years scans clear. Here we go again 5-08 spine met to L-2, treatment 6-08 of 10 days of radiation will wait about a month and re-scan. 7-08 re-scan met shows no change everything else clear, start zometa once a month, follow up in 90 day's. 10-08 re-scan spine no change, chest/abdomen clear, new spot on pelvis will start alimta once a month and continue zometa for 90 day's. Re-scan in 90 day's. I continued the Alimta and Zometa till about December 2009 with NED scans. At that time Doc. agreed to stop treatment and go to monitoring with scans every 90 day's. Around Feb. 2011 started to develop some lower back pain but scans NED. October 2011 lower back pain still present ct suspicious so Doc. orders mri. Dx small fracture and disease progression. Start 15 day's radiation and order pet scan. Results of pet chest, abdomen clear but small uptake in pelvis again. Doc. recommends new drug crizotinib or alimta treatments again every 3 weeks.

Strah, I really have no information only wanted to say I am sorry you have started on this journey again. Hope the treatment is successful this time too.

_________________
Ginny
Please use gdecoursey@aol.com for email.

Earl born 1/28/42 - dx 9/21/02 - died 8/18/04. He was the sunshine of my life.

Sending a tumor out to be tested isn't "normal" ...yet....but I'd love for it to be. Doctors and medical facilities who do the tumor tests are ahead of the game in my opinion.

Knowing whether or not you have a gene mutation can determine what kind of treatment will work effectively on you. There's controversy over the expense of such testing but if it saves lives, there's no debate with me. Testing to see if your cancer has a mutation and your treatments can be personalize to YOUR cancer is common sense to me.

I've read many stories on how well crizotinib works.

I hate that you have to battle the beast again, but I'm so optimistic reading that you will begin Crizotinib.

My prayers for your total success.

Please keep us posted.

Hugs,
K

_________________
- Katie Brown, Co-Founder and Director of LCSC-

15 yr cancer survivor.

"Any of us who have experienced the cancer journey- and survived it-
have an obligation to make the path clearer and aid those that come after us."
- Lance Armstrong

In memory of Jessee Dewey, SCLC
December 29, 1938 - September 6, 2003
Lisa Dewey- Jan. 22, 2007
my parents are together in heaven


facebook www.facebook.com/lungevity

Sounds like a positive plan. I'm going to remember the name of the chemo since I'm possibly dealing with it again too.

I just came in to say HI. I am relatively new here. I'm Judy in MI so that they don't confuse me with Judy in KW!

Judy in MI

_________________
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25

Thanks Katie and thanks again for your dedication and all that you do. As far as testing my tumor the reason my doctor gave me and hopefully I'm understanding it correctly was at the time they were getting ready to start a clinical trial at the Cleveland Clinic and this crizotinib only works with certain lung cancers (adenocarcinoma) and you have to have I believe it's called the ALK gene. Well anyway I had that and he said the crizotinib worked and I qualified for the trial. At the time I said I didn't want to participate because I wasn't having any problems and there was nothing for them to compare which he agreed. I think I'm leaning toward starting the crizotinib but I was hoping to get some opinions on how it's worked and the real side effects people are dealing with.

_________________
Diagnosed 11-04 IIIa Adenocarcinoma age 34
Clinical trial phase 1 of paclitaxel,carboplatin and osi-774(tarceva) with concurrent accelerated hyperfractionation radiation followed by maint. therapy with tarceva. The trial was broken down in two courses the first being 3 weeks of combo chemo and 12 days of twice a day radiation and tarceva each day. After was approved for surgery 2-05 rt pneumonectomy, 4 nodes and a rib. Recovered from surgery about 6 weeks and started course 2 which was the same as 1. Continued tarceva about another year and a half. Go every 6 months for check up 3 years scans clear. Here we go again 5-08 spine met to L-2, treatment 6-08 of 10 days of radiation will wait about a month and re-scan. 7-08 re-scan met shows no change everything else clear, start zometa once a month, follow up in 90 day's. 10-08 re-scan spine no change, chest/abdomen clear, new spot on pelvis will start alimta once a month and continue zometa for 90 day's. Re-scan in 90 day's. I continued the Alimta and Zometa till about December 2009 with NED scans. At that time Doc. agreed to stop treatment and go to monitoring with scans every 90 day's. Around Feb. 2011 started to develop some lower back pain but scans NED. October 2011 lower back pain still present ct suspicious so Doc. orders mri. Dx small fracture and disease progression. Start 15 day's radiation and order pet scan. Results of pet chest, abdomen clear but small uptake in pelvis again. Doc. recommends new drug crizotinib or alimta treatments again every 3 weeks.

I'll find you a patient to talk to.

Having the ALK is like hitting the jackpot...that sounds insane, but it's a very good thing...(Like EGFR mutation for those taking Tarceva)
so good that the FDA approved it at the speed of light, Pfizer (the drug company that makes it) is putting out a huge campaign to let doctors know that testing tumors for gene mutations can save lives....

_________________
- Katie Brown, Co-Founder and Director of LCSC-

15 yr cancer survivor.

"Any of us who have experienced the cancer journey- and survived it-
have an obligation to make the path clearer and aid those that come after us."
- Lance Armstrong

In memory of Jessee Dewey, SCLC
December 29, 1938 - September 6, 2003
Lisa Dewey- Jan. 22, 2007
my parents are together in heaven


facebook www.facebook.com/lungevity

Here's Kurts Story. You can message him and his wife jamie at kjshull3@gmail.com


http://blog.lungevity.org/2011/09/14/re ... r-options/

Thanks Katie and reading Kurt's story is so much what I needed to hear.

_________________
Diagnosed 11-04 IIIa Adenocarcinoma age 34
Clinical trial phase 1 of paclitaxel,carboplatin and osi-774(tarceva) with concurrent accelerated hyperfractionation radiation followed by maint. therapy with tarceva. The trial was broken down in two courses the first being 3 weeks of combo chemo and 12 days of twice a day radiation and tarceva each day. After was approved for surgery 2-05 rt pneumonectomy, 4 nodes and a rib. Recovered from surgery about 6 weeks and started course 2 which was the same as 1. Continued tarceva about another year and a half. Go every 6 months for check up 3 years scans clear. Here we go again 5-08 spine met to L-2, treatment 6-08 of 10 days of radiation will wait about a month and re-scan. 7-08 re-scan met shows no change everything else clear, start zometa once a month, follow up in 90 day's. 10-08 re-scan spine no change, chest/abdomen clear, new spot on pelvis will start alimta once a month and continue zometa for 90 day's. Re-scan in 90 day's. I continued the Alimta and Zometa till about December 2009 with NED scans. At that time Doc. agreed to stop treatment and go to monitoring with scans every 90 day's. Around Feb. 2011 started to develop some lower back pain but scans NED. October 2011 lower back pain still present ct suspicious so Doc. orders mri. Dx small fracture and disease progression. Start 15 day's radiation and order pet scan. Results of pet chest, abdomen clear but small uptake in pelvis again. Doc. recommends new drug crizotinib or alimta treatments again every 3 weeks.

Crizotinib is now called Xalkori. It received FDA approval for patients with the ALK rearrangement this past September (I think that is right.)

I think there is a LUNGevity video of State Senator Andy Hill from the August Seattle walk:
http://www.youtube.com/watch?v=xQ15GZCVWYU

He is a criz trialist and a super responder. He's also patient X in Dr. West's TedX video.
http://tedxtalks.ted.com/video/TEDxOver ... k-West-Sel

And my favorite - the woman who was the face of crizotinib, Linnea:
http://lifeandbreath.wordpress.com/
She progressed just as the FDA approval came, but she is on a new trial for that and it sounds like she is doing very well, again.

Here's to being a great responder!

_________________
(photo: me in '61)
Female never smoked, 52 at diagnosis, otherwise healthy
09/08: false cardiac event = finding of 3 cm tumor upper right lobe plus two .5 cm nodes elsewhere on chest x-ray at ER
09/08: CTScan with IV contrast confirms.
10/08: Pulmonary referral for EBUS - bronchoscopy - confirms NSCLC - adenocarcinoma, with bronchoalveolar features
10/08: PetScan - further confirmation, classified T1N0MX (false negative) VATS scheduled.
11/08: full open surgery - revised to T4N2MX with positive spread to 2 lymph nodes, removed upper lobe with 3 cm tumor and partial mid lobe with (1) .5 cm tumor, 3 lymph nodes on trachea - 1 lymph node and margins negative.
5 night hospital stay.
12/08: Port-a-cath implanted
12/08: Brain MRI and hearing test - good other than minor high end loss in left ear
12/08: start (4) 21 day cycles of chemo - day 1 cisplatin and gemcitabine, day 8 gemcitabine alone, day 15 off - tolerated it pretty well - a little hair thinning and follicle inflammation, some ringing in ears and vertigo, much fatigue, and nausea. Kept my taste-buds almost intact.
02/27/09: completed 4 cycles of chemo!
03/03/09: removed port-a-cath
03/27/09: tattooed for radiation
03/30/09: start radiation (IMRT) 5x/wk for 6 weeks - fatigue, moderate esophagitis
5/08/09: completed treatment
6/22/09: NED
9/18/09: Recurrance in the liver and scattered in lungs. No symptoms. Rx Tarceva.
9/25/09: start Tarceva
11/20/09: clear lungs, shrinkage in liver.
2/24/10: still good on Tarceva
6/3/10: graduated to 6 month scan
12/9/10: new 6 cm tumor in liver
12/28/10: stop Tarceva
1/10/11: carbo/alimta/avastin
3/11/11: scan after 3 cycles 72%ish met reduction, stay the course
5/26/11: scan after 6 cycles, stable.
5/31/11: begin Avastin maintenance.
8/17/11: met growth, stop Avastin. Start Alimta.
10/25/11: met growth, stop Alimta. Wondering what to do next?
1/24/11: start hospice

Thank you for the info I called my Onc. today to get started. He said they mail the drug so i should get it sometime next week.

_________________
Diagnosed 11-04 IIIa Adenocarcinoma age 34
Clinical trial phase 1 of paclitaxel,carboplatin and osi-774(tarceva) with concurrent accelerated hyperfractionation radiation followed by maint. therapy with tarceva. The trial was broken down in two courses the first being 3 weeks of combo chemo and 12 days of twice a day radiation and tarceva each day. After was approved for surgery 2-05 rt pneumonectomy, 4 nodes and a rib. Recovered from surgery about 6 weeks and started course 2 which was the same as 1. Continued tarceva about another year and a half. Go every 6 months for check up 3 years scans clear. Here we go again 5-08 spine met to L-2, treatment 6-08 of 10 days of radiation will wait about a month and re-scan. 7-08 re-scan met shows no change everything else clear, start zometa once a month, follow up in 90 day's. 10-08 re-scan spine no change, chest/abdomen clear, new spot on pelvis will start alimta once a month and continue zometa for 90 day's. Re-scan in 90 day's. I continued the Alimta and Zometa till about December 2009 with NED scans. At that time Doc. agreed to stop treatment and go to monitoring with scans every 90 day's. Around Feb. 2011 started to develop some lower back pain but scans NED. October 2011 lower back pain still present ct suspicious so Doc. orders mri. Dx small fracture and disease progression. Start 15 day's radiation and order pet scan. Results of pet chest, abdomen clear but small uptake in pelvis again. Doc. recommends new drug crizotinib or alimta treatments again every 3 weeks.

Sorry you have to be back. Wishing you the best of treatment luck. Now I have to remember to ask my onc about the ALK gene.

Judy in KW

_________________
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 just wanted to give an update on the xalkori. It's been almost one month and as far as side effects theres basically none. At night or in low light situations I get a little of the flashing light traces but during the day nothing. In the morning I make sure to eat a light breakfast about an hour before taking my first pill as it helps with the mild nautia. Other than that I can't complain about anything. My back pain has been slowly going away so I hope that this means the drug is working. I get scanned again in a few weeks and I will post the results.

_________________
Diagnosed 11-04 IIIa Adenocarcinoma age 34
Clinical trial phase 1 of paclitaxel,carboplatin and osi-774(tarceva) with concurrent accelerated hyperfractionation radiation followed by maint. therapy with tarceva. The trial was broken down in two courses the first being 3 weeks of combo chemo and 12 days of twice a day radiation and tarceva each day. After was approved for surgery 2-05 rt pneumonectomy, 4 nodes and a rib. Recovered from surgery about 6 weeks and started course 2 which was the same as 1. Continued tarceva about another year and a half. Go every 6 months for check up 3 years scans clear. Here we go again 5-08 spine met to L-2, treatment 6-08 of 10 days of radiation will wait about a month and re-scan. 7-08 re-scan met shows no change everything else clear, start zometa once a month, follow up in 90 day's. 10-08 re-scan spine no change, chest/abdomen clear, new spot on pelvis will start alimta once a month and continue zometa for 90 day's. Re-scan in 90 day's. I continued the Alimta and Zometa till about December 2009 with NED scans. At that time Doc. agreed to stop treatment and go to monitoring with scans every 90 day's. Around Feb. 2011 started to develop some lower back pain but scans NED. October 2011 lower back pain still present ct suspicious so Doc. orders mri. Dx small fracture and disease progression. Start 15 day's radiation and order pet scan. Results of pet chest, abdomen clear but small uptake in pelvis again. Doc. recommends new drug crizotinib or alimta treatments again every 3 weeks.

Sounds good to me. Will be waiting for your scan results.

Judy in KW

This sounds like encouraging news indeed. I'm keeping you in my prayers and I'll keep a watch for your update!!

Hugs
xoxo

_________________
- Katie Brown, Co-Founder and Director of LCSC-

15 yr cancer survivor.

"Any of us who have experienced the cancer journey- and survived it-
have an obligation to make the path clearer and aid those that come after us."
- Lance Armstrong

In memory of Jessee Dewey, SCLC
December 29, 1938 - September 6, 2003
Lisa Dewey- Jan. 22, 2007
my parents are together in heaven


facebook www.facebook.com/lungevity

Finally some good news for a change the scans came back good. I'm not sure if NED is the proper term for this time but my Doc. said none of the spots on my back or pelvis lit up on the PET scan. He was very happy and said we would scan again in 90 days. The crizotinib has been great to be on other than I have to have a little breakfast before I take it.

_________________
Diagnosed 11-04 IIIa Adenocarcinoma age 34
Clinical trial phase 1 of paclitaxel,carboplatin and osi-774(tarceva) with concurrent accelerated hyperfractionation radiation followed by maint. therapy with tarceva. The trial was broken down in two courses the first being 3 weeks of combo chemo and 12 days of twice a day radiation and tarceva each day. After was approved for surgery 2-05 rt pneumonectomy, 4 nodes and a rib. Recovered from surgery about 6 weeks and started course 2 which was the same as 1. Continued tarceva about another year and a half. Go every 6 months for check up 3 years scans clear. Here we go again 5-08 spine met to L-2, treatment 6-08 of 10 days of radiation will wait about a month and re-scan. 7-08 re-scan met shows no change everything else clear, start zometa once a month, follow up in 90 day's. 10-08 re-scan spine no change, chest/abdomen clear, new spot on pelvis will start alimta once a month and continue zometa for 90 day's. Re-scan in 90 day's. I continued the Alimta and Zometa till about December 2009 with NED scans. At that time Doc. agreed to stop treatment and go to monitoring with scans every 90 day's. Around Feb. 2011 started to develop some lower back pain but scans NED. October 2011 lower back pain still present ct suspicious so Doc. orders mri. Dx small fracture and disease progression. Start 15 day's radiation and order pet scan. Results of pet chest, abdomen clear but small uptake in pelvis again. Doc. recommends new drug crizotinib or alimta treatments again every 3 weeks.

WONDERFUL NEWS!!! SO happy to read this!!

_________________
- Katie Brown, Co-Founder and Director of LCSC-

15 yr cancer survivor.

"Any of us who have experienced the cancer journey- and survived it-
have an obligation to make the path clearer and aid those that come after us."
- Lance Armstrong

In memory of Jessee Dewey, SCLC
December 29, 1938 - September 6, 2003
Lisa Dewey- Jan. 22, 2007
my parents are together in heaven


facebook www.facebook.com/lungevity

Great news - thanks for sharing!

_________________
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

TERRIFIC! And thanks for reporting on a drug new to me. I may need it down the line. Unfortunately I can't be tested for the ALK. When I asked the radiologist who removed my fluid last week to be sure to keep enough for the ALK test, he said he understands they need a good chunk of tumor to test for it. Don't have one but am sure my onc would let me try the critoztinib anyway.

Judy in KW

Great news! Congrats on the good scans!

_________________
Bud

Long distance cyclist and lung cancer survivor
56 years old at time of diagnosis in 2007, now live in Crowley, Tx
Nov 2007 - Tentatively diagnosed as NSCLC stage I from CT scan
Dec 2007 - Upper left lobectomy, biopsy showed one cancerous lymph node, changing the diagnosis to stage II (squamous cell)
Feb to Apr 2008 - Three rounds of cisplatin and gemcitabine
Apr 2008 - chest x-ray, NED
May 2008 - brain mri, clear
Jul 2008 - CT scan, NED
Dec 2008 - CT scan, NED
June 2009 - CT scan, NED
Jan 2010 - CT scan, NED
July 2010 - CT scan, NED
June 2011 - CT scan, NED
May 2012 - CT scan, NED
December 2012 - CT scan, NED. I am now a 5 year survivor!

June 2009 - Wife Rose diagnosed with breast cancer
Stage III IDC
Sept 2009 - Finished 4 rounds of chemo (AC)
Nov 2009 - Surgery
March 2010 - Finished 12 weeks of weekly Taxol
August 2010 - CT scan, NED
August 2011 - Checkup, NED
August 2012 - Checkup, NED
The rest of my story is at:

http://www.lungevity.org/l_community/vi ... hp?t=38841

My blog - uneasy-rider.com