I have a 3 month follow CT scan on Monday the 11th. Friday the 15th I get results. I am on Xalkori the genetically targeted drug for ALK (anaplastic lymphoma kinase) translocation. A mutation found in my tumor cells. At 2 week of beginning treatment a stopped daily vomiting and went off all pain meds. At 8 weeks my left lung, collapsed with tumor, was open and functioning. Tumor was gone off left adrenal gland and all "nodes" forming in right lung were gone. They called it"significant" response. I am anxious to hear if this response will continue. I am stage 4 and surgery was never option. I did have 4 rounds of chemo (taxol and carboplatin) which only gave me brief stabilty.

I don't know anyone else on Xalkori (crizotinib). I know it is used on a small, specific population with the ALK translocation. I wondered if anyone else is on this drug, either now or were part of the clinical trials and what their experiences have been like?

I will come back with an update when I get results. I good and hope results reflect that.

Susan

_________________
To read my story follow this link:

http://lungevity.org/l_community/viewtopic.php?f=47&t=47071

Significant, I would say is an understatement. All things crossed for the 15th.

_________________
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.

Hi Susan,
I would say you are making remarkable progress with your treatments.I do know that Senator Andy Hill has made a wonderful reponse in receiving Xalkori.Best wishes.

_________________
Regards,
Eric Byrne

To read my story, please follow the link : http://lungevity.org/l_community/viewtopic.php?t=43268

I talked to a chap at the summitt who started xalcori(sp)) when it came out 2 years ago and said it was his miracle. Hopefully it will do as well for you.

Thank you Eric and Alan for the positive results updates on Xalkori. My oncologist seemed to think since my response was so fast that it would be very effective for me. I am only his second patient to actually use the treatment, but I am sure he has read cases on it. I was just wondering if there were other good results out there and it sounds like there are. I had not actually talked to anyone else who had used it yet. It sounds encouraging to hear of others success and hopefully my good results will be with me for awhile!

Susan.

_________________
To read my story follow this link:

http://lungevity.org/l_community/viewtopic.php?f=47&t=47071

Thank you for Being a pioneer in Lung cancer research!!

_________________
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!!

Susan - will be thinking positive thoughts for GREAT results for your scan and it sure sounds extremely good. I have also heard great results about this drug for the small group it targets - and it certainly sounds as though you are one of the fortunate ones. All of these new treatments are so exciting and as Randy said - thanks for contributing to LC research.

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

Susan, Matt Ellefson from Hope Summit is on XALKORI too, you might want to check in with him, so was Craig Uthe I think. I'll be thinking about you and keeping you in my prayers on your tests!

_________________
- 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 you have been getting great results Susan. I pray they continue.

_________________
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

Susan, I don't know anything about the chemo drug you are on, but it sounds like you have really had a remarkable response. Just want you to know that you can count on my prayers for great results from the upcoming scan. Will be checking back.

Hugs,
Sue

_________________
[size=84]husband, Mike, 59 years old
**2-01 dx'd Stage 1 nsclc-9cm tumor to right lung-no lymph node involvement...
**4-30-01 pneumonectomy right lung removed. No followup chemo or radiation , but scans and xrays were done
**1-28-04 dx w/recurrent stage IV nsclc tumor on stump of where right lung had been removed , lymph node involvement, tumor adrenal gland -lft side, **02-04-04- taxol & carboplatin 3 treatments-didn't work
**02-12-04- radiation 10 to lung for bleeding
**04-2--04-taxotere had 4 treatments. shrinkage had occured in all after 3.. continuing taxotere. making him very tired ... upper body swelling ..
** 08-01-04-in hospital
latest..
**08-02-04 had stent put in .. superior vena cava.. the vein was being blocked by pressure tumor.
**08-05-04-started 10 radiation treatments,
**08-30-04- started Navelbine on 3 weeks and off 1 Scan after 5 treatments show chemo Navelbine not working -slight decrease to lung mass, but slight increase to adrenal ....
**11-01-04-starting Gemzar ... had 3 treatments... too many side effects... Ct of chest and upper abdomen done on Dec. 2nd -results some shrinkage
**12-06-04-started Alimta Dec. 6th- first treatment went well Had 2nd treatment Dec. 27th ... developed a rash and is tired, but otherwise ok Scan Feb 7th, 2005 STABLE doing good continuing Alimta April 18th scans showed stable disease (after 6 Alimta treatments), but he now has pneumonitis... no more treatments until much better.. on prednisone and oxygen..
**05-31-05 Ct scan of chest showed pneumonitis resolved and stable cancer
**06-06-05-our 35th wedding anniversary... onc confirms everything resolving and stable -reccommends break continued til August
**6-15-05 to 6-18-05 in hospital due to mental confusion ..
had MRI-member empty head club

8-3-2005-Ct scans chest , abdomen and pelvic....Waiting and praying...
**8-8-2005-Ct results were that the chest area looked improved, but the adrenal area had increased and involved some lymph nodes.
Started Tarceva 150mg 8-16-2005-8-20-2005 stopped 2 weeks due to severe rash on 9-8-2005 started back on Tarceva at 100 mg now.. stopped again on 9-19-2005
9-30-2005 scans slight progression to nodes behind adrenal..
10-10-2005-Camptosar- CPT-11 started
10-31-2005- CPT-11
refused more CPT-11 made him extremely fatigued and nauseated
Dec. 6th -CTscans chest, abdomen & pelvic. shows stable but tumor compressing the esophagus..
Dec. 19th- had stent to trachea put in
Dec. 21st- he had stent to esophagus and feeding tube put in
Dec. 22nd.. he will ill put in hospital... vomiting and also coughing and congestion in for 4 days... home for Christmas Dec. 25th... still recouperating with antibiotics etc.
Continuing cough and numerous doctor visits.
*Jan 30th-Feb 4th- hospitalized again with cough ..
Still has cough , but controlled most of the time Hasn't been able to resume chemo

**My "prince charming", best friend, husband and soul mate,, Mike passed away March 2, 2006 after being a 5 year survivor and fighting a very courageous battle**
______________________
Mom- 78 yrs old..
nsclc diag May 2nd, 2007-surgery 2sm tumors removed in wedge section... lymph nodes clear
Tarceva as adjuvant started on June 23rd..quit July2nd.. side effects numerous... am waiting now til next appt. July 13th
July 20th... Mom NED.PET clear and normal .. will go back on half 75mg Tarceva... see how that works..
Stop Tarceva 8-25 too many side effects
Oct. 22nd- Mom surgeon visit, chest xray and results .. all clear, no sign of cancer...
Feb. 18th Mom's PET Scan
March 7th Mom's PET Scan results.. NED
Sept. 22, 08 Mom PET Scan
Sept. 29, 08 Mom PET results new nodule 3/4 "...here we go again.... :-(
*Updated*- Mom surgery- Oct. 30th.. surgeon removed top part of upper right lobe. Nothing showed malignant. She had pneumonia after surgery and a 3 week hospital stay, but she is slowly regaining her strength and is currently NED..

March 3, 2009 CT scan.... results showed some little things along suture line that the doctor believed was healing.. will wait til next scan and compare.

June 2, 2009- CT Scan.. results there is an area along suture line that has increased in size and thickening.. doctor thinks could be cancer... a needle biopsy will be done..

A quick update.. the results of the needle biopsy did confirm that it was cancer...

Cyberknife was done the first week in November..

Pet scan .. Dec. 8th...
Dec. 11th -results .. cyberknife worked and the rest of the scan is clean... YAY!!! Happy Birthday (Dec. 19th.. 81st) and Merry Xmas Mom!
Dec. 2010 NED!!!
June 2, 2011.. Pet Scan results .. NED!!!
Nov 3, 2011.. CT scan results.. NED!!!
Sept. 18, 2012 .. our loving mom has passed on ..Heaven received a most precious angel.


graphic by
http://www.maryslittlelamb.com[/size]

Hi Susan,

Since reading this, you've been on my mind. I keep you in my prayers each day, and know that the 11th must be on your mind a lot. You are a hero for allowing this kind of research to be done. Many lives will be saved because of this, and that is awesome!

Praying for the best results!

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

Sue
I was just trying to get caught up on the site after having a busy week and I saw this. At least one member of my in-person support group is on Crizotnib and she has been doing very well. I think she has been on it for quite a while now. We have support group on Monday so I will check, but it seems like it has been a year or more. I am sure she would be happy to chat with you if you want to talk to someone else who is using it.
you are in my prayers, always
Peace

_________________
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

I certainly hope and pray that this treatment continues to be successful for you as well as for so many others. Keeping you in my prayers.

Carol

_________________
Carol
64 Year old former smoker
1/4/05 at age 56 DX NSCLC, upper right lobe.
Staged IIA by PET Scan.
Restaged to IIIA by surgeon prior to surgery, after he examined PET and CT Scan results.
4/7/05 Completed 6 weeks of radiation and chemotherapy (taxol/carboplatin).
4/29/05 CT Scan.
5/21/05 PET Scan.
5/31/05 Met with surgeon, PET Scan showed nodule in left lung lit up that never lit up before.
6/9/05 Biopsy=OK nodule is scar tissue.
7/1/05 BRONCHOSCOPY,
MEDIASTINOSCOPY, THORACOTOMY SURGERY=ALL MARGINS CLEAN, 20 LYMPH NODES REMOVED. PLUS ONE RIB BONE. ALL NEGATIVE FOR CANCER.
8/9/05 & 9/1/05 ADJUVANT CHEMO. 10/4/05 1ST CT SCAN="Defined patchy density at the superior segment of the right lower lobe. Findings are most likely related to recent surgery and/or posttreatment change, however, this should be followed on subsequent studies".
1/3/06 Brain CT=Clear;Chest CT=Scar Tissue.
1/4/06 ONE YEAR SINCE DIAGNOSIS
4/1/06 Brain & Chest CT=NED. 6/13/06 XRAY=NERD.
7/1/06 ONE YEAR SINCE SURGERY.
10/25/06 CT=NED.
1/4/07 TWO YEARS SINCE DIAGNOSIS
5/3/07 CT=NED.
7/1/07 TWO YEARS SINCE SURGERY.
11/6/07 CT=NED
PLEASE continue to keep me in your prayers.WHEN PRAISES GO UP, BLESSINGS COME DOWN.[/size]
1/4/08 THREE YEARS SINCE DIAGNOSIS
3/20/08 CT=NED
6/20/08 X-RAY=NED
7/1/08 THREE YEARS SINCE SURGERY.
10/27/08 CT=NED
1/4/09 FOUR YEARS SINCE DIAGNOSIS
3/26/09 X-RAY=NED
7/1/09 FOUR YEARS SINCE SURGERY.
9/17/09 CHEST X-RAY CEA BLOOD TEST=NED
1/4/10 FIVE YEARS SINCE DIAGNOSIS
3/29/10 X-RAY=NED
10/5/10 CT=NED
4/1/11 X-RAY=NED
7/1/11 SIX YEARS SINCE SURGERY
10/10/11 X-RAY=NED
4/15/12 CT/PET=NED
4/18/13 CT=NEW 3MM NODULE FOUND ON UPPER LEFT LOBE

The Ct scan went well today. Now to just stay busy with other things so I don't worry about what my results will be this Friday morning. It is hard not to think about it, but I keep remembering what my oncologist told me," I put a lot of weight on how the patient is feeling, not just test results, to make decisions." I have been feeling good. With the one exception of a little incident involving an abcessed tooth last Thursday and Friday. Ended up at an emergency room getting it lanced and drained. My biggest relief was hearing my oncologist tell me, it is not cancer related, just a dental issue. I had googled severe jaw pain and lung cancer together and got a lot of hits and panicked. Never thought I would be relieved to have JUST an abcessed tooth. Cancer trumps almost everything, so this seemed minor once antibiotic kicked in. I may feel different after I consult the oral surgeon about getting the tooth removed. Will post an update on results after I get them. Thanks for all the encouragement and prayers!

Susan

_________________
To read my story follow this link:

http://lungevity.org/l_community/viewtopic.php?f=47&t=47071

always run medical questions past Dr West at CancerGrace.org... he is great about getting responses back asap!! and You will not scare yourself as bad!!!

_________________
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!!

Been thinking about you today. Glad your scan is behind you, but sorry about the long wait til Friday for results. I'm also sorry you had to go through the pain of an abcessed tooth, but am glad it is a dental issue.. sometimes Google is NOT your friend.. lol Hope things go well with the oral surgeon and you get that bad boy outta your mouth soon. Keep us updated.

Hugs,
Sue

_________________
[size=84]husband, Mike, 59 years old
**2-01 dx'd Stage 1 nsclc-9cm tumor to right lung-no lymph node involvement...
**4-30-01 pneumonectomy right lung removed. No followup chemo or radiation , but scans and xrays were done
**1-28-04 dx w/recurrent stage IV nsclc tumor on stump of where right lung had been removed , lymph node involvement, tumor adrenal gland -lft side, **02-04-04- taxol & carboplatin 3 treatments-didn't work
**02-12-04- radiation 10 to lung for bleeding
**04-2--04-taxotere had 4 treatments. shrinkage had occured in all after 3.. continuing taxotere. making him very tired ... upper body swelling ..
** 08-01-04-in hospital
latest..
**08-02-04 had stent put in .. superior vena cava.. the vein was being blocked by pressure tumor.
**08-05-04-started 10 radiation treatments,
**08-30-04- started Navelbine on 3 weeks and off 1 Scan after 5 treatments show chemo Navelbine not working -slight decrease to lung mass, but slight increase to adrenal ....
**11-01-04-starting Gemzar ... had 3 treatments... too many side effects... Ct of chest and upper abdomen done on Dec. 2nd -results some shrinkage
**12-06-04-started Alimta Dec. 6th- first treatment went well Had 2nd treatment Dec. 27th ... developed a rash and is tired, but otherwise ok Scan Feb 7th, 2005 STABLE doing good continuing Alimta April 18th scans showed stable disease (after 6 Alimta treatments), but he now has pneumonitis... no more treatments until much better.. on prednisone and oxygen..
**05-31-05 Ct scan of chest showed pneumonitis resolved and stable cancer
**06-06-05-our 35th wedding anniversary... onc confirms everything resolving and stable -reccommends break continued til August
**6-15-05 to 6-18-05 in hospital due to mental confusion ..
had MRI-member empty head club

8-3-2005-Ct scans chest , abdomen and pelvic....Waiting and praying...
**8-8-2005-Ct results were that the chest area looked improved, but the adrenal area had increased and involved some lymph nodes.
Started Tarceva 150mg 8-16-2005-8-20-2005 stopped 2 weeks due to severe rash on 9-8-2005 started back on Tarceva at 100 mg now.. stopped again on 9-19-2005
9-30-2005 scans slight progression to nodes behind adrenal..
10-10-2005-Camptosar- CPT-11 started
10-31-2005- CPT-11
refused more CPT-11 made him extremely fatigued and nauseated
Dec. 6th -CTscans chest, abdomen & pelvic. shows stable but tumor compressing the esophagus..
Dec. 19th- had stent to trachea put in
Dec. 21st- he had stent to esophagus and feeding tube put in
Dec. 22nd.. he will ill put in hospital... vomiting and also coughing and congestion in for 4 days... home for Christmas Dec. 25th... still recouperating with antibiotics etc.
Continuing cough and numerous doctor visits.
*Jan 30th-Feb 4th- hospitalized again with cough ..
Still has cough , but controlled most of the time Hasn't been able to resume chemo

**My "prince charming", best friend, husband and soul mate,, Mike passed away March 2, 2006 after being a 5 year survivor and fighting a very courageous battle**
______________________
Mom- 78 yrs old..
nsclc diag May 2nd, 2007-surgery 2sm tumors removed in wedge section... lymph nodes clear
Tarceva as adjuvant started on June 23rd..quit July2nd.. side effects numerous... am waiting now til next appt. July 13th
July 20th... Mom NED.PET clear and normal .. will go back on half 75mg Tarceva... see how that works..
Stop Tarceva 8-25 too many side effects
Oct. 22nd- Mom surgeon visit, chest xray and results .. all clear, no sign of cancer...
Feb. 18th Mom's PET Scan
March 7th Mom's PET Scan results.. NED
Sept. 22, 08 Mom PET Scan
Sept. 29, 08 Mom PET results new nodule 3/4 "...here we go again.... :-(
*Updated*- Mom surgery- Oct. 30th.. surgeon removed top part of upper right lobe. Nothing showed malignant. She had pneumonia after surgery and a 3 week hospital stay, but she is slowly regaining her strength and is currently NED..

March 3, 2009 CT scan.... results showed some little things along suture line that the doctor believed was healing.. will wait til next scan and compare.

June 2, 2009- CT Scan.. results there is an area along suture line that has increased in size and thickening.. doctor thinks could be cancer... a needle biopsy will be done..

A quick update.. the results of the needle biopsy did confirm that it was cancer...

Cyberknife was done the first week in November..

Pet scan .. Dec. 8th...
Dec. 11th -results .. cyberknife worked and the rest of the scan is clean... YAY!!! Happy Birthday (Dec. 19th.. 81st) and Merry Xmas Mom!
Dec. 2010 NED!!!
June 2, 2011.. Pet Scan results .. NED!!!
Nov 3, 2011.. CT scan results.. NED!!!
Sept. 18, 2012 .. our loving mom has passed on ..Heaven received a most precious angel.


graphic by
http://www.maryslittlelamb.com[/size]