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 3 days, 22 hours ago.

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January 4, 2017 at 11:46 am  #1289705    
catdander forum moderator
catdander forum moderator

Scohn,

Her cure leze? I like the sound of it. I can’t tell you how much we appreciate you sharing the incites into which decisions are made for treatment.

(((hugs and hope all around)))
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?

January 4, 2017 at 1:41 pm  #1289709    

scohn

Thanks Janine. Cyber Hugs are welcome anytime! I hope you have the happiest of New Years, and I’ll keep in touch once we know more from this latest CT.


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 3 months, 3 weeks ago by  scohn.
  • This reply was modified 3 months, 3 weeks ago by  scohn.
January 11, 2017 at 8:54 am  #1289760    

scohn

Hi everyone.

So it looks like relatively good news from the latest CT scan, and POSSIBLA is holding up to the name we gave it. The main lung tumor still grew, but at a much slower rate than from the last CT scan. The one liver lesion that still lit up with last month’s PET scan also shrunk a little, after growing a little on the last CT scan – the other measured liver lesion that showed no PET activity last month stayed stable. No new metastases, no significant change in bone lesions, and a very minor increase in one lymph node in the area.

So it looks like everything is relatively stable this time, with reduced growth in the main tumor, and most importantly, no new metastases. This all seems to correspond with the experimental rationale for the drug that shows PTK7 is likely not just a marker for adenocarcinomas, but may be important in the ability of tumors to form new tumor initiating cells that support tumor growth and metastases.

So, we can take a bit of a breath now in seeing the regrowth we saw in the last CT scan has been tamped down a bit. My wife sees the oncologist for details (and her next POSSIBLA infusion) this afternoon, but for the moment it looks like my wife will stay on POSSIBLA, at least until the new ARIAD EGFR/HER2 TKI trial comes to Chicago in March or April.

Deep breaths, and one day, one CT scan at a time. Another emotional Gatorade® for the marathon.

As always – my heart and hugs go out to all those going through this. A chorus that my wife and I are in is singing at a memorial service this weekend for a member who died recently of cancer, which keeps the scourge even more on my mind.


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

January 11, 2017 at 10:07 am  #1289765    
catdander forum moderator
catdander forum moderator

!!!YaY!!! So good to hear the news. Anything’s POSSIBLA…
I am sorry about your friend and fellow caroler. It makes it even more difficult to see when you are going through the cancer experience yourself.

Take care you two.
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?

March 8, 2017 at 6:08 am  #1290290    

scohn

Latest update – looks good! Just got back our latest CT results after about two months. Almost everything is the model of stability. No new metastasis in the liver, all liver spots are the same size or slightly smaller. Main lung tumor is the same size (very tiny bit smaller). I am guessing that this drug must be generally producing some stable results in trial patients, as they told my wife that while she can still get a CT scan every 6-8 weeks, at this point in her trial they only require one every 10-12 weeks (tumor has been generally stable for about 4 months).

The only disconcerting news is that it looks like those small bone metastases might be starting to act up. They aren’t any bigger, but there is one new rib metastasis, and one of the others has some signs of tissue breakdown surrounding it. With her initial chemotherapy my wife was on Xgeva (as they said Xgeva appears to help slow any recurrence of bone metastasis) but for this trial they wanted her to have Zometa, as they worried Xgeva might interfere with clinical trial drug since both were antibody based. However, since the Zometa isn’t working for holding back bone breakdown or new initiation of bone metastases, my wife is going to try to ask again if she can have Xgeva.

As for the other trial drug, the HER2 TKI being developed, apparently the phase I dosing is going slowly (possible due to the buy out of ARIAD by Takeda) and so will probably not go into phase Ib/II expansion into Chicago until late 2017. My wife’s trial doctor said that since the current trial drug is still working, she wouldn’t recommend her going to that other trial until at least the new trial drug’s dosage is worked out and they have some initial results on its efficacy.

So, once more a sigh and breath for a good CT scan, and we go onward! Only 4 months until our trip to the Galapgos!


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

March 8, 2017 at 8:44 am  #1290292    
JimC Forum Moderator
JimC Forum Moderator

Hi scohn,

That’s great news, and thanks for sharing it with us. As far as the bone metastases, your local doctors would best be able to judge, but it the apparent progression there is minimal, it might make sense to wait until after the next scan to see what is really going on. At times, scans can be misleading, and since the cancer is under control everywhere else, it might be good not to rock the boat until you’re sure a change is necessary.

In that same vein, I think you’re getting good advice to wait on the other trial drug. Even if the dosage is set and it’s showing signs of efficacy, there’s no guaranty it will be effective for any one particular patient. Stability in pretreted stage IV lung cancer is a very good result, so you might want to get as much benefit from the current therapy as possible.

Hoping for continued good results.

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

March 8, 2017 at 8:53 am  #1290293    
catdander forum moderator
catdander forum moderator

The Galapagos! Yes! We want pictures.

I’m so glad to hear the scans look good, what a relief it is for you and yours. Let us know what the outcome is on the xgeva and zometa. My hopes are with you and her with lots of hugs.

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?

March 9, 2017 at 10:52 pm  #1290311    

scohn

Thanks Jim and Janine!

One minor point I forgot was that I wanted to mention a method of control of side effects for anyone reading this and having similar symptoms. Since being on the PTK7 trial drug my wife has had digestive issues (kind of alternating bouts of diarrhea and constipation). She read up a little on things that might help, and, with the approval of the trial nurse, tried taking some slippery elm capsules. They have worked great!! The only caution that the trial nurse mentioned is that the capsules should be taken at least 2 hours before any other medication, as it somewhat coats the intestines and can interfere with the absorption of other drugs or medications. But it worked wonders in less than a week.


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

March 10, 2017 at 7:59 am  #1290313    
JimC Forum Moderator
JimC Forum Moderator

Hi scohn,

Thanks for the tip, and so good to hear it worked well (and quickly!) for your wife.

Slippery elm was touted by another user in this thread for general digestive problems, and the thread contains other recommendations that might help you at some point as well.

Keep sending us positive updates…we love ‘em!

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

April 26, 2017 at 6:07 am  #1290643    

scohn

Well, the latest CT Scan is good and stable, for the most part. Main lung tumor, bone metastases, adrenal glands, all seem unchanged. So, after a brief bout of starting to grow last year, the main lung tumor is now holding steady at about 50% of its largest volume for about 5 months. However, while the liver spot that did not show up on the last PET scan continued to decrease in size, the main active liver spot increased in size and there appears to be more small liver spots appearing. But my wife is seeing the doctor today when she gets her drug treatment, so she will probably get more details then. We were a bit concerned as her cough seems to have been getting a little worse the past few weeks, but it does not appear to be due to any major growth in the lung tumor.


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 4 days, 3 hours ago by  scohn.
  • This reply was modified 4 days, 3 hours ago by  scohn.
April 26, 2017 at 8:31 am  #1290647    
catdander forum moderator
catdander forum moderator

Hi Scohn,

Why is the news on lung cancer rarely if ever just good. Since the primary is stable and the only place of progression is the liver I wonder if ablation is an option. Best hopes to y’all and I’ve got my fingers crossed.

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?

April 26, 2017 at 11:30 am  #1290649    

scohn

Thanks Janine for your good wishes!

Minor update. The trial drug oncologist things the radiologist was pretty aggressive with the interpretation and is not convinced there is much growth in the liver. However, in case the cancer does start growing, the oncologist suggested retesting the liver tumor for mutations/markers to see if there are any changes. My wife said the oncologist was also getting a little frustrated that the ARIAD trial drug is taking so long to get to Phase II in Chicago, and suggested that my wife may want to talk to the trial drug people in Denver to just get an initial sense of whether registering to start the drug there at some point before it comes to Chicago would be advisable or not.

But I feel good about going to the March for Science in Washington last weekend to help promote science and scientific research!


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 3 days, 22 hours ago by  scohn.
  • This reply was modified 3 days, 22 hours ago by  scohn.
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