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 2 months ago.

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June 28, 2017 at 8:07 am  #1290935    
JimC Forum Moderator
JimC Forum Moderator

Excellent news, scohn! I hope that makes everything easier for your wife. Keep sharing the good news!

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 30, 2017 at 4:35 pm  #1290957    
catdander forum moderator
catdander forum moderator

YAHOO Scohn et al
I hope the change will do y’all good.
Janine

July 28, 2017 at 4:09 pm  #1291140    

scohn

Just wanted to let everyone know that all is well, and that we had a great time in the Galapagos! My wife had a little chest pain now and then that was likely due to the heavier breathing (Quito is at 9000 ft) that seems to have completely subsided now that we are back home in Chicago. She seemed to do better on hiking some of the trails than I did (but she is better person than me in most respects).

And we got back in time for her to have another dose of the clinical trial drug the first day back!

As always, thanks to everyone for all their support and encouragement!



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-large tumor reduction.

July 29, 2017 at 7:44 am  #1291141    
JimC Forum Moderator
JimC Forum Moderator

Hi scohn,

That’s really wonderful…I’m so glad you were able to make such an incredible trip. I can’t imagine how fascinating it would be to visit the Galapagos. And getting back in time for another dose worked out just perfectly.

And it does sound like your wife is a terrific person, but we think you’re pretty special too. I think you’re lucky to have each other.

Please keep these great updates coming!

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

August 22, 2017 at 11:07 am  #1291283    

scohn

Onward, onward…..
Well, we haven’t gotten the official CT report yet, but the trial oncologist has told us (a few days after her initial review that things looked basically stable) that the tumor board reviewed the latest scan, and based on growth in the liver and some new lymph nodes showing up, they have determined that the drug is no longer effective enough, and my wife is no longer eligible for the trial drug. It was a good 16 months, but….

The trial oncologist and our regular oncologist are going to confer, but the trial oncologist is suggesting going on Gemzar. The trial oncologist thinks afatanib would not be a good choice as she has found it to have a lot of side effects, and relatively poor efficacy. She has seen much better results with Gemzar. The other new trial drug made for Exon 20 mutations of EGFR and HER2 that is currently in Colorado should be coming to Chicago soon (late fall?), and so it is another option [also when in Chicago it would be a phase II, and not phase I, so they would have more of the dosing worked out]. The oncologist said one option is to start soon with the Gemzar, see if it works, and if not then go to the new trial drug. Another option is to take a break with chemo for the moment and wait a few months until the trial drug comes to Chicago.

Since my wife is feeling relatively well, and wants to keep any liver growth at bay, she feels she is likely to just go with the Gemzar and see if it works. It is a whole different pathway than the current trial drug, so we are hoping it might also help to reverse some of the neuropathy. Basically it works on similar mechanisms to the Carboplatin treatments, which worked really well, but seems to have fewer side effects.

Anyway, once more into the breach. Since the trial seems to be over, this may be the last entry in this thread, and I will start a new one with the new treatments.


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-large tumor reduction.

August 22, 2017 at 11:22 am  #1291284    

scohn

Also, now that we are ending this trial, for those who might want to know what the main side effects with the PTK7 ADC trial drug were for my wife during her 16 months on it:

Hair loss- (after about 5 months)

Digestive issues – (greatly helped by taking slippery elm)

Joint Pain – (helped by gabapentin)

Peripheral Neuropathy/Occasional Hand Strength issues – (at this point after 16 months the tips of her toes and fingers are pretty numb – we will see if this starts to return after stopping the drug)

Some body rash/Itching – started about 10 months into the trial, treated with about 10 days of mild steroids after each drug treatment

Overall good side effect profile – no reduction at all in WBC or RBC
No effect on energy level or mobility

On drug effect side – showed great reduction of tumor over about 2-3 months, then generally stable after that.
It likely would still have stability were there not a genetic change in the liver 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-large tumor reduction.

August 22, 2017 at 1:57 pm  #1291288    
JimC Forum Moderator
JimC Forum Moderator

Hi scohn,

I’m sorry that the new scan results will bump your wife from the trial. The options presented by her oncologist seem reasonable. As far as afatinib, Dr. West has had this to say:

“[A]fatinib has been shown to NOT be especially effective for rare EGFR mutations (and results of EGFR TKIs in patients with exon 20 mutations have tended to be unimpressive, or at best quite variable), and its value in treating ERBB3 (HER3) is unknown, but we couldn’t presume it will be effective. Because afatinib is not approved by the FDA for people with these mutations, it may not be covered by your insurer. Even if it’s possible to get it paid for, it very well may be ineffective.

I have generally given an EGFR TKI to most patients, at least as a later treatment option, because sometimes I have been surprised to see an excellent response in someone reported as not having an activating mutation. I think that’s a reasonable approach to try here, and afatinib might be a fine one to try based on the ERBB3 (HER3) mutation as well. However, the report’s mention of afatinib should be construed more as “hey, you could always try afatinib, I suppose”, rather than “afatinib is highly likely to lead to a good response”. – http://cancergrace.org/topic/exon-20-and-erbb3-amplification-is-afatinib-really-an-option#post-1264768

Given her good performance status, I can understand your wife’s interest in keeping the liver mets under control, shifting to Gemzar seems to be a good choice, and likely more tolerable than the leading alternative, Taxotere, which generally has a higher toxicity profile.

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

August 22, 2017 at 2:56 pm  #1291293    

scohn

Thanks Jim! I appreciate your help as always!

The insurance approved afatinib right away (more than a year ago) after the HER2 was confirmed in the sequencing of the biopsy, but everything I have looked up has also shown the results in treating HER2 mutations to be very positive (high percentage of positive response or stable disease), but short-lived, requiring far higher dosages than its use for standard EGFR mutations, and thus with the potential for lots of side effects. The Gemzar seems like a good alternative, and hopefully if my wife goes on it she will recover a bit of the neuropathy that occurred (while any of the taxol based therapies would likely only increase the neuropathy). Moreover, the hope is that Gemzar would at least work long enough to make it until the HER2 clinical trial drug makes it to Chicago in Phase II. And we will still have afatinib possibility in our back pocket.

I will update more once my wife meets with her regular oncologist this 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-large tumor reduction.

August 23, 2017 at 9:26 am  #1291300    
catdander forum moderator
catdander forum moderator

Hi Scohn,

I’m sorry your wife has further progressed and off the trial. It’s good to hear she won’t need to deal with a taxane and I hope she does well on gemzar. I don’t know that my husband, Don is an example of how effective it can be. Even though he took it for over a year it appears he was already cured (I still have to cross my fingers when I think that but he’s at 5 years post treatment and recent CT haze has cleared). There are others who have come through Grace who have had many months success with gemzar with low toxicity.

Hugs all around,
Janine

August 23, 2017 at 10:49 am  #1291303    

scohn

Thanks Janine. I really appreciate it. It helps to know that there is support from the many who have travelled this path before. One day and one chemotherapy at a time…. We just watched the movie Paterson last night, and it was all about the poetry and love that is all around you in everyday life, if only one takes the time to listen and look. Be well!

P.S. Here’s a shot from the eclipse I took. Sara now wants to go to a spot for totality at the next eclipse (another good one coming in 7 years).



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-large tumor reduction.

August 23, 2017 at 12:10 pm  #1291305    
JimC Forum Moderator
JimC Forum Moderator

Hi scohn,

Nice photo, glad that your local weather gave you the chance to see it.

Lisa and I drove down to the centerline of totality in Tennessee and it was incredible.

Take care,

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

August 23, 2017 at 12:15 pm  #1291306    
catdander forum moderator
catdander forum moderator

What a beautiful pic! JimC and Lisa took some nice pics of the total eclipse and they were just a few miles (as the crow flies) from where Don and I watch it. My new term for how it made me feel is Eclipse Verklempced. Not exactly the true spelling or pronunciation but…
I would say that the next US total eclipse is a very goal for Sara. I know how difficult that is for you to wish for but it must be doubly * infinity for her so I already love Sara for her goal setting even though I’ve never met her. I believe there’s one in Argentina in just a couple of years. Road Trip?

August 23, 2017 at 1:26 pm  #1291309    

scohn

Thanks! It was really cloudy here, and no totality, but the clouds would break just enough to let us see it off and on. I know several friends who went down to Tennessee to see it and said it was amazing. I also had a number of friends who went down to Carbondale here in Illinois (the center of the eclipse) and said it was great, but at the SIU stadium where they set up for it, clouds came at the last minute and they only saw a few seconds of totality. A good friend who is an astronomer went to Grand Tetons for the total and said it was also amazing!

As for the road trip – Possibly! When I told my wife about the one in 7 years here she said something to the effect of, “That’s nice, but there must be a full eclipse somewhere sooner we can travel to!” The one in a couple years goes through Chile & Argentina, but most of it is in the ocean, so we might just have to take an eclipse cruise!

Yes, Sara is amazing. We continue to operate in the surreal world between doing whatever it is she needs to do currently, figuring out the best next approach to take, and planning for the future as normal. As I have mentioned before, it helps a lot that Sara is in great shape physically for the most part, and that almost everything we have had to deal with has been the side effects of treatment, and so far we have held the cancer at bay enough to have relatively few primary effects. Who knows how long that will last. I do not know all the roads our lives will travel in the future, but I know I have already been blessed by the roads we have already travelled.


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-large tumor reduction.

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