Update on Clinical Trial

Portal Forums Member Updates Lung Cancer Member Updates Update on Clinical Trial

This topic contains 71 replies, has 9 voices, and was last updated by  scohn 12 hours, 34 minutes ago.

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May 12, 2016 at 11:53 pm  #1274025    

scohn

Well, overall it looks like good news so far from our clinical trial.
We just got back the first CT scan since my wife started the clinical trial 6 weeks ago (2 treatments, one every 3 weeks of an antibody drug conjugate).

One liver tumor had no growth at all, the second liver tumor decreased in size by more than 50%.
The main tumor in the lung also decreased significantly in size, although by how much is not clear. The actual main tumor mass decreased by about 50%, however they saw a few small nodules close by the main tumor mass which they described as possible seeding. I have not come across that term before, but I assume that means they think the main tumor might have broken apart a bit to create some smaller fragments, so they are not sure how much of the main mass is gone and how much is simply now made up of the smaller nodules. In any case, the obstruction from the clinging of the lung to the tumor, causing the main coughing, has decreased substantially.

In addition, the small thickening they were concerned about on the adrenal they saw before was not observed, although there is a new sclerotic lesion on the L5 vertebrae that has shown up.

Otherwise no new sites observed, and all lung lesions are still confined to the Right middle lung. No growths of any lymph nodes.

So, the results of the first set looks good, and she is approved to go on with another 2 treatments.

And also helping to ease our worries….most of the wedding invitations have now been sent out!


Wife, lifelong non-smoker, dx 4/24/15 adenocar. right mid lung, stage IV, poorly differentiated. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – 50-70% reduction in primary tumor, lymph nodes normal, bone regrowth into lesion site. Alimta maint. not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective-growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable. 2/17-All Stable

May 13, 2016 at 6:32 am  #1274028    
JimC Forum Moderator
JimC Forum Moderator

Hi scohn,

Thank you for sharing the update, and the terrific news! Any time a second (or later) line of therapy produces tumor shrinkage, especially after only two treatment cycles, that’s an excellent result.

Best wishes for continued success, and for a wonderful wedding celebration!

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

May 22, 2016 at 2:26 pm  #1274129    

Dr. Ben Creelan

Great, sounds like good news. What is the name of the drug?

May 24, 2016 at 1:26 pm  #1274147    

scohn

Hi Dr. Creelan. It is a Pfizer drug, currently known as PF-06647020, being tested through clinical trial NCT02222922. The presentation on initial dosing and effectiveness from the early Phase 1 can be found here:

http://player.meta-fusion.com/late-breaking-abstract-a-phase-1-study-of-pf-06647020-an-antibody-drug-conjugate-targeting-ptk7-in-patients-with-advanced-solid-tumors

The initial results on unscreened patients wasn’t particularly strong for effectiveness on lung cancer, but my wife is in the second part of Phase 1, in the group of adenocarcinoma lung cancer patients that were pre-screened for moderate to heavy presence of PTK7. The drug is an ADC, auristatin payload, connected to an antibody against PTK7. We are doing it through University of Chicago (one of four US locations, the others being at Stanford, Scottsdale, and San Antonio). Her tumor is a HER2 mutation, but I have no idea whether the HER2 (almost all adenocarcinomas if I understand it right) also correlates with higher PTK7 expression.

My wife just had her third treatment, and her cough is now almost completely gone, so we continue to hope for future good news! The main side effect (which nurses say is common with the drug) seems to be what they think is some sort of nerve effect that causes pain in joints that randomly come and go. For my wife it shows up about the 5th day after treatment and lasts for about 5-6 days. Generally controllable with Ibuprofin, it causes a number of sleepless nights, as it appears to be much worse when resting or lying still.

Thanks for your interest!


Wife, lifelong non-smoker, dx 4/24/15 adenocar. right mid lung, stage IV, poorly differentiated. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – 50-70% reduction in primary tumor, lymph nodes normal, bone regrowth into lesion site. Alimta maint. not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective-growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable. 2/17-All Stable

  • This reply was modified 11 months, 1 week ago by  scohn.
  • This reply was modified 11 months, 1 week ago by  scohn.
June 14, 2016 at 4:54 pm  #1274330    

anypap21

Hello Schon,

May I ask how you were able to get involved in the trial? My father has just been diagnosed with Stage IV NSCLC. His cough is the worst and sometimes he even blacks out…but worst of all is the panic it ensues. It’s only been 8 days since we discovered the tumor that has spread to a small lesion on his liver, a spot on his opposite side rib and one on his spine. As I write, he is starting his first dose of chemotherapy.

I’m 37 and am planning on getting married and trying to have my first child in the next year -18 months. I want my father to walk me down the aisle and meet his grandchild. And of course i just want him to live as long and painless as possible. But even if he weren’t to be around to see those things, I at least want him to enjoy the time he has left. I’m looking for anything that might help him to do that.

Apologies for the more emotional and less scientific post. I’m still just trying to get my head around it all.

Appreciate any information on the trial or how to get involved in others.

June 15, 2016 at 1:01 pm  #1274362    
catdander forum moderator
catdander forum moderator

Hi anypap21,

Welcome to Grace. I’m so sorry about your dad’s new diagnosis and know how devastating it is right from the very beginning. I want you to know that the more you know about his options the better in control you’ll feel. I think the best place to start is the “Intro to Lung Cancer” post, http://cancergrace.org/lung/2010/04/05/an-introduction-to-lung-cancer/

We can go from there with questions you’ll have. You dad’s oncology team is the best situated to know his individual needs for all people with cancer are different. We have a lot of knowledge on how it may go with or without certain treatments but every ones cancer behave differently.

Don’t hesitate to begin a new thread if you’re not able to find answers. Someone else may have the same question and find it in you title.

I hope your dad does well for a long time to come.
All best,
Janine


My husband, 8/09 53 @ dx stage III squam nsclc R. pancoast tumor
Destruction of 3 ribs, touching brachial plexus.
6/09-8/09 2 core and 1 VATS undx biopsies. Open thoracotomy for 1 positive biopsy (unresectable)
9/09 Chemo/rads curative intent
11/09 MRI by pancoast specialist surgeon spine met found undiagnosed Rad to spine, Chemo continued thru 6 cycles
Tarceva maintenance 2/10
11/10 3cm tumor L lung, undx core bx w/collapsed lung. Gemzar, 12/10 through 7/12
NED 3/12, stop tx 7/12. Remains NED as of 9/16
Unanswerable question. Was it ever metastatic?

June 15, 2016 at 1:05 pm  #1274363    
catdander forum moderator
catdander forum moderator

Hi scohn,

Perhaps a drug like gabapentin or lyrica would be appropriate to try during those days. It would be worth asking the research team.

I hope this finds you both living life,
Janine


My husband, 8/09 53 @ dx stage III squam nsclc R. pancoast tumor
Destruction of 3 ribs, touching brachial plexus.
6/09-8/09 2 core and 1 VATS undx biopsies. Open thoracotomy for 1 positive biopsy (unresectable)
9/09 Chemo/rads curative intent
11/09 MRI by pancoast specialist surgeon spine met found undiagnosed Rad to spine, Chemo continued thru 6 cycles
Tarceva maintenance 2/10
11/10 3cm tumor L lung, undx core bx w/collapsed lung. Gemzar, 12/10 through 7/12
NED 3/12, stop tx 7/12. Remains NED as of 9/16
Unanswerable question. Was it ever metastatic?

June 15, 2016 at 1:23 pm  #1274365    

scohn

Hi anypap.

Please – no need for any apologies. I remember all too well the first few weeks when they told us of my wife’s diagnosis. Within 2 weeks we went from a diagnosis of possible unresolved pneumonia to stage IV lung cancer. I know this site helped me (and still helps me) to realize that I am not alone, and that there are many traveling this unknown road together. The people at this site have helped me enormously.

I am so sorry to hear of your father’s diagnosis, and I hope he does well on his chemotherapy. As for the trial, my wife’s oncologist knows many people at U of Chicago (we are in Chicago) and keeps track of the types of trials that are going on. He suggested we talk to the doctor running the trial, which we did. After some testing to see if she had the marker on her tumor cells for which this drug is directed (which she did) we were approved for the trial.

As for trials in general, you can look them up at: http://www.cancer.gov/about-cancer/treatment/clinical-trials/search

However, it is pretty overwhelming to try and sort through the large number of trials out there. Moreover, trials are generally only considered after you don’t respond to (or have stopped responding to) first-line (and even second-line) treatments. Your father should make sure to talk to his oncologist about the nature of his cancer so that he (and you) feels comfortable about all the treatment options available, both now and potential ones in the future. You haven’t mentioned anything about the nature of the diagnosis, so I don’t know if they have done any molecular analysis of the tumor, but our trial doctor at U of Chicago told us that more and more the treatment methods are being determined by the molecular aspects of the tumor (e.g. if there is a known particular mutation causing the tumor) along with the extent and location of the tumor/cancer.

I wish you and your father all the best in the treatments, and may you all celebrate many future occasions in joy.


Wife, lifelong non-smoker, dx 4/24/15 adenocar. right mid lung, stage IV, poorly differentiated. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – 50-70% reduction in primary tumor, lymph nodes normal, bone regrowth into lesion site. Alimta maint. not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective-growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable. 2/17-All Stable

June 15, 2016 at 1:36 pm  #1274370    

scohn

Hi Janine.

Thanks for the suggestions. We talked with the doctors and are hoping to stay away from the drugs like gabapentin for the time being if we can.

It turns out they aren’t really sure what is causing this, so for her 4th drug treatment they are having her take some steroids for the first week, to see if it is due in part to inflammation. So far my wife says it seems to have cut the pain in about half, but is definitely still there, and still seems to be at least mainly controlled by ibuprofen (she is also trying naproxin this time to see if that works as well). My wife says it usually goes away as quickly as it comes, although for the last treatment it lasted about 2-3 days longer and was a little worse, so we hope it is not cumulative (have no way of knowing yet).

And, just in time for the wedding, it looks like the side effect of hair loss is starting to kick in. She is looking into getting a wig just in case……

Just a couple of weeks away now!
Thanks for your support!


Wife, lifelong non-smoker, dx 4/24/15 adenocar. right mid lung, stage IV, poorly differentiated. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – 50-70% reduction in primary tumor, lymph nodes normal, bone regrowth into lesion site. Alimta maint. not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective-growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable. 2/17-All Stable

June 15, 2016 at 1:55 pm  #1274372    
catdander forum moderator
catdander forum moderator

I know you are both very excited about the wedding. I wonder if she is able to schedule the infusions around the parties so she might not be affected by the lousy side effects during that time. Usually it’s fine to skip a treatment for grand occasions like this. Most people have.

Tell her I think she should go ALL OUT on the wig.
I look forward to a pic of the big day.

Janine


My husband, 8/09 53 @ dx stage III squam nsclc R. pancoast tumor
Destruction of 3 ribs, touching brachial plexus.
6/09-8/09 2 core and 1 VATS undx biopsies. Open thoracotomy for 1 positive biopsy (unresectable)
9/09 Chemo/rads curative intent
11/09 MRI by pancoast specialist surgeon spine met found undiagnosed Rad to spine, Chemo continued thru 6 cycles
Tarceva maintenance 2/10
11/10 3cm tumor L lung, undx core bx w/collapsed lung. Gemzar, 12/10 through 7/12
NED 3/12, stop tx 7/12. Remains NED as of 9/16
Unanswerable question. Was it ever metastatic?

June 16, 2016 at 7:24 am  #1274384    

scohn

Thanks Janine!

We have already taken care of changing the treatment schedule. Since it’s a clinical trial we had to get special permission from Pfizer to delay a treatment by a week, so my wife won’t have another treatment until we get back from the wedding. This week should be the worst in terms of pain, so it should mainly be gone during the time at the wedding. We also have another ct scan next week so hopefully it will be as good as the first one and we’ll have lots to celebrate at the wedding!


Wife, lifelong non-smoker, dx 4/24/15 adenocar. right mid lung, stage IV, poorly differentiated. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – 50-70% reduction in primary tumor, lymph nodes normal, bone regrowth into lesion site. Alimta maint. not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective-growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable. 2/17-All Stable

June 16, 2016 at 8:24 am  #1274391    
catdander forum moderator
catdander forum moderator

I do want a pic!


My husband, 8/09 53 @ dx stage III squam nsclc R. pancoast tumor
Destruction of 3 ribs, touching brachial plexus.
6/09-8/09 2 core and 1 VATS undx biopsies. Open thoracotomy for 1 positive biopsy (unresectable)
9/09 Chemo/rads curative intent
11/09 MRI by pancoast specialist surgeon spine met found undiagnosed Rad to spine, Chemo continued thru 6 cycles
Tarceva maintenance 2/10
11/10 3cm tumor L lung, undx core bx w/collapsed lung. Gemzar, 12/10 through 7/12
NED 3/12, stop tx 7/12. Remains NED as of 9/16
Unanswerable question. Was it ever metastatic?

June 16, 2016 at 9:20 am  #1274392    

scohn

Sure thing – although I will have to see how to post a picture. I just tried to post one of my son’s graduation and wasn’t too successful.


Wife, lifelong non-smoker, dx 4/24/15 adenocar. right mid lung, stage IV, poorly differentiated. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – 50-70% reduction in primary tumor, lymph nodes normal, bone regrowth into lesion site. Alimta maint. not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective-growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable. 2/17-All Stable

June 16, 2016 at 10:32 am  #1274396    
catdander forum moderator
catdander forum moderator

hmm, me too. Let’s ask Denise.


My husband, 8/09 53 @ dx stage III squam nsclc R. pancoast tumor
Destruction of 3 ribs, touching brachial plexus.
6/09-8/09 2 core and 1 VATS undx biopsies. Open thoracotomy for 1 positive biopsy (unresectable)
9/09 Chemo/rads curative intent
11/09 MRI by pancoast specialist surgeon spine met found undiagnosed Rad to spine, Chemo continued thru 6 cycles
Tarceva maintenance 2/10
11/10 3cm tumor L lung, undx core bx w/collapsed lung. Gemzar, 12/10 through 7/12
NED 3/12, stop tx 7/12. Remains NED as of 9/16
Unanswerable question. Was it ever metastatic?

June 22, 2016 at 5:36 pm  #1274464    
Denise Brock
Denise Brock

June 22, 2016 at 5:37 pm  #1274465    
Denise Brock
Denise Brock

hi all – it looks like the picture posting is fixed. (see above). Please let me know if it works for you…
Denise

June 23, 2016 at 3:57 pm  #1274468    

scohn

Thanks Denise!
To test it out, here’s a picture of me, my wife and my daughter at my wife’s recent retirement.



Wife, lifelong non-smoker, dx 4/24/15 adenocar. right mid lung, stage IV, poorly differentiated. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – 50-70% reduction in primary tumor, lymph nodes normal, bone regrowth into lesion site. Alimta maint. not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective-growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable. 2/17-All Stable

June 23, 2016 at 4:08 pm  #1274469    

scohn

Picture works great – thanks Denise! I will post one of the wedding once we get back.

In the meantime, great news on the CT front – the latest CT scan showed an additional 30% reduction in the main tumor and 10-40% reductions in some of the liver tumors. The trial doctors were really excited!

So we go to the wedding with great results and happiness al the way around!


Wife, lifelong non-smoker, dx 4/24/15 adenocar. right mid lung, stage IV, poorly differentiated. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – 50-70% reduction in primary tumor, lymph nodes normal, bone regrowth into lesion site. Alimta maint. not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective-growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable. 2/17-All Stable

June 25, 2016 at 11:39 am  #1274483    
catdander forum moderator
catdander forum moderator

IT’S BEAUTIFUL! news and pic

and

A BIG thanks to Denise for making it all possible:)


My husband, 8/09 53 @ dx stage III squam nsclc R. pancoast tumor
Destruction of 3 ribs, touching brachial plexus.
6/09-8/09 2 core and 1 VATS undx biopsies. Open thoracotomy for 1 positive biopsy (unresectable)
9/09 Chemo/rads curative intent
11/09 MRI by pancoast specialist surgeon spine met found undiagnosed Rad to spine, Chemo continued thru 6 cycles
Tarceva maintenance 2/10
11/10 3cm tumor L lung, undx core bx w/collapsed lung. Gemzar, 12/10 through 7/12
NED 3/12, stop tx 7/12. Remains NED as of 9/16
Unanswerable question. Was it ever metastatic?

July 5, 2016 at 9:36 pm  #1274591    

scohn

Well, here it is.


Wife, lifelong non-smoker, dx 4/24/15 adenocar. right mid lung, stage IV, poorly differentiated. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – 50-70% reduction in primary tumor, lymph nodes normal, bone regrowth into lesion site. Alimta maint. not effective, tumor growth, 2 new liver mets. 11/15 – Opdivo; Not effective-growth & new liver mets. 4/16 – clinical trial drug, tumor & liver met reduced 50-70%. 11/16-main tumor growth, liver mets stable. 2/17-All Stable

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