Update on Clinical Trial

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

This topic contains 92 replies, has 9 voices, and was last updated by  scohn 1 month 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

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 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-main tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 start Gemzar

  • This reply was modified 8 months, 3 weeks ago by  scohn.
  • This reply was modified 8 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 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-main tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 start Gemzar

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

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 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-main tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 start Gemzar

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

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 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-main tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 start Gemzar

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 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-main tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 start Gemzar

  • This reply was modified 5 months ago by  scohn.
  • This reply was modified 5 months 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

April 26, 2017 at 11:30 am  #1290649    

scohn

Thanks Janine for your good wishes!

Minor update. The trial drug oncologist thinks 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 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-main tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 start Gemzar

  • This reply was modified 5 months ago by  scohn.
  • This reply was modified 3 months, 3 weeks ago by  scohn.
  • This reply was modified 5 months ago by  scohn.
  • This reply was modified 3 months, 3 weeks ago by  scohn.
June 6, 2017 at 2:58 pm  #1290826    

scohn

Hi Jim.

Minor question. I just edited the post (found a few typos) and now it doesn’t show up at all. Did I do something wrong? Thanks!


Wife, lifelong non-smoker, dx 4/24/15 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-main tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 start Gemzar

June 6, 2017 at 2:59 pm  #1290827    

scohn

(In case it doesn’t show up still – here is the previous post)

Latest update – CT scan shows everything is still stable (no change at all in main lung tumor, no new suspicious lesions seen, no changes in lymph nodes, no changes in bone lesions, although the rib is still showing a mild fracture as seen probably). Interesting point on the new CT report though. After the big conferral of radiologists and oncologists on the last CT scan to determine if the liver lesions were really growing or not (their conclusion was possibly, but not substantially, and not with absolute certainty, so basically stable), the new CT report does not even measure the liver lesions, saying there was no gross changes in the lesions, “given the differences in technique and timing of contrast”. So it looks to me like as long as all else is well, unless they really see a major change in the liver spots at this point, they are unlikely to report the size, to ensure that the RECIST criteria continue to allow my wife to take the trial drug.

Given the continued stability, we are not going to start on the other new trial drug quite yet, but we are still going to Denver, and will possibly meet with the people at the cancer center there if they still want us to. After the last call, my wife wasn’t sure whether they wanted to meet if we weren’t ready to immediately start the trial (which they are ready to do).

On the symptom side, my wife’s cough seems to be getting worse, and may be the reason, in part, for what the CT scan sees as the formation of a very small hiatal hernia. The CT scan also reported there was slight emphysematous changes, so this might be what is causing the increased cough. She also has been experiencing achiness, possibly from her recent dose of Zometa for the bone lesions (under the trial drug criteria she can’t take Xgeva).

Counting the days – 5 weeks to Galapagos.


Wife, lifelong non-smoker, dx 4/24/15 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-main tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 start Gemzar

June 6, 2017 at 3:31 pm  #1290828    
JimC Forum Moderator
JimC Forum Moderator

I’m not sure what happened, but I don’t see that post now either. Some kind of glitch with the editing process, I guess. Sorry about that, but I’m glad you were able to recreate it. I’ll reproduce my response here so that it follows in logical order:

Thank you for sharing your wife’s terrific news! As you know, in this context stability is a great result, and it’s good that she’ll be able to continue on the trial. I think it makes sense not to add the other trial drug at this point, and get as much benefit as possible from the current regimen. On the other hand, continuing to research future options is wise.

I’m sorry to hear of her worsening cough. I hope that her doctors can help her find some relief. If you haven’t already seen it, Dr. Harman has a good post on managing cough here.

Have a great time on what should be an incredible trip to the Galapagos!

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

June 6, 2017 at 3:36 pm  #1290830    
JimC Forum Moderator
JimC Forum Moderator

Hi scohn,

In looking at this further, it seems that what happened is that in the course of your edits the post was grabbed by our spam filter I could restore it, but since you’ve already recreated it, we’ll just leave it be, together with my reply.

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

June 6, 2017 at 10:09 pm  #1290831    

scohn

Ah! Thanks Jim for checking that out. Your filter has obviously checked out my writing before and knows where the quality of my work really belongs :-D


Wife, lifelong non-smoker, dx 4/24/15 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-main tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 start Gemzar

June 6, 2017 at 10:33 pm  #1290832    

scohn

And Jim – thanks for the cough info. Reminded me of one other brief thing to mention. Her cough got pretty bad last night, so when she got up she tried a dose of her vinegar-honey recipe for coughs and it lasted for about 12 hours with no cough! Doesn’t always work, but it does sometimes, so it’s always worth a try. She normally uses the dextromethorphan, but it hasn’t been working quite as well lately. When she first started taking dextromethorphan for the cough, it kept getting put in her ongoing medication records as Dextromethadone or some other narcotic, and we had to keep getting it corrected! We used to laugh wondering what drug it was going to show up as on her list. They finally got it right. Apparently since dextromethorphan is usually used as part of a mixture with an expectorant or decongestant, and not as a sole medication, they had a hard time finding the right code to enter it in correctly.


Wife, lifelong non-smoker, dx 4/24/15 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-main tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 start Gemzar

June 26, 2017 at 1:57 pm  #1290919    

scohn

OK – the new Foundation report has come in. She appears to have developed (at least in the liver lesion where the biopsy was taken) a new amplification of the AURKA gene. This is the Aurora Kinase A gene (one which I know a little about from the Cell Biology meetings I go to). This gene does seem to be amplified in some tumors, but I am also guessing it is particularly amplified in pre-treated tumors, since this gene affects the mechanism by which cells organize internal proteins (microtubules) to divide. Since the trial drug is based on a microtubule poison to stop cells from dividing, it makes sense that finding ways to divide with fewer microtubules would be one of the ways the cells get around the drug. So, this may be the reason that some of the liver lesions may seem to be responding a little less well to the trial drug than the main tumor. It may be that the main lung lesion is still unaffected by AURKA amplification.

So, we will talk to the oncologist, but it may still be a wait and see – keep with the current clinical trial drug until there is definite signs of progression, and then switch if necessary to the new clinical trial drug in Denver (or Chicago if we can hold out until then). Since the new clinical trial drug operates at a different level (directly on HER2), it might be completely unaffected by the AURKA amplification.

The other thing the report said is that my wife has a very low tumor burden. This is good news for understanding the nature of the tumor (i.e. HER2 is likely the only real driving mutation still), but bad news for any future immunotherapy, as there seems to be increasing evidence that tumor burden may be as strong (or stronger) an indicator of immunotherapy effectiveness as PD/PDL presence (see e.g. https://genomemedicine.biomedcentral.com/articles/10.1186/s13073-017-0424-2).


Wife, lifelong non-smoker, dx 4/24/15 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-main tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 start Gemzar

June 28, 2017 at 6:17 am  #1290933    

scohn

Hooray! The trial has approved the use of Xgeva again instead of Zometa. Hopefully that will be one less side effect to worry about! My wife had joint/muscle pains with Zometa similar to Neulasta.


Wife, lifelong non-smoker, dx 4/24/15 adeno NSCLC stage IV, poorly diff. 2 bone mets, 1 lymph node. HER2 Exon 20 mutation. 6x Carbo/Alimta – >50% reduction in primary tumor, lymph nodes, & bone. Alimta maint. not effective, tumor growth, new liver mets. 11/15 – Opdivo; Not effective-add’l growth. 4/16 – clinical trial drug, large reduction of tumor and mets. 11/16-main tumor growth, liver mets stable. 2/17-All Stable. 8/17- Add’l growth-off trial, 9/17 start Gemzar

  • This reply was modified 3 months ago by  scohn.
  • This reply was modified 3 months ago by  scohn.
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