Update on Clinical Trial - 1274025

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scohn
Update on Clinical Trial - 1274025

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!

JimC
Hi scohn,

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

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

carrigallen
Great, sounds like good news.

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

scohn
Hi Dr. Creelan. It is a

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-...

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, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla.

anypap21
Hello Schon,

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.

catdander
Hi anypap21,

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

catdander
Hi scohn,

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

scohn
Hi anypap.

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, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla.

scohn
Hi Janine.

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, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla.

catdander
I know you are both very

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

scohn
Thanks Janine!

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, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla.

catdander
I do want a pic!

I do want a pic!

scohn
Sure thing - although I will

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, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla.

catdander
hmm, me too. Let's ask Denise

hmm, me too. Let's ask Denise.

dbrock
dbrock's picture
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Visit my bio here.

dbrock
dbrock's picture
hi all - it looks like the

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

Visit my bio here.

scohn
Thanks Denise!

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

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla.

scohn
Picture works great - thanks

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, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla.

catdander
IT'S BEAUTIFUL! news and pic

IT'S BEAUTIFUL! news and pic

and

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

scohn
Well, here it is.

Well, here it is.

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla.

catdander
The 3 of you look wonderful!!

The 3 of you look wonderful!!! and the setting is beautiful!
What a lucky couple to have have both mom and dad to walk the bride to the alter. :-D

scohn
Just a brief update on the

Just a brief update on the clinical trial. The drug continues to show activity with main tumor (and liver metastases) still reducing in size. The size of the main tumor is now definitely smaller than it has ever been since the first CT scan, including slightly smaller than it was after the 6 carbo/alimta treatments. As importantly, the drug also seems to be working on the liver metastases.

There does seem to be some continuing nerve pain that comes on about a week after the treatment, and lasting about a week or so after that, but the gabapentin is keeping that in check. My wife is also doing some acupuncture, but she is not sure as to the extent that it is reducing the pain - for a couple of the treatments it seems to have worked well, but relief is short-lived. The gabapentin and massaging some acupressure points in the hand seem to work best.

My wife and I were joking yesterday that if this drug ever goes to market we think the patients on the drug should have a shot at coming up with a good trade name for it.

As always - thanks to everyone for their continued support and encouragement.

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla.

catdander
It's so great to hear she is

It's so great to hear she is doing so well, more or less. I love the idea of naming the drug. Do tell what ideas your wife has for the drug.

scohn
Well we had a few thoughts

Well we had a few thoughts (based on the fact that almost all trade names in with a vowel for some reason) -
We could go with the fact that many of the new ADCs have ADC in their name and go with:
ADCETERA

Or go with the hope for great things and try
BOYOBOYA
WOWZIRA
AMAZMIO
TUMORSKIDOO

Or my wife thought since it is in a clinical trial still, perhaps just go with
POSSIBLA

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla.

catdander
TUMORSKIDOO HA

TUMORSKIDOO HA

Dr West
Great stuff!

Great stuff!

We need to get the pharma marketing people who are paid to make these names to check out this thread.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

lynnandpete
hi. i'm new to this site. i

hi. i'm new to this site. i found it by searching for information on the pfizer trial at u of chicago. my husband was diagnosed one year ago with NSCLC and went through radiation, carboplatin/abraxane, opdivo and a trial of opdivo plus urelumab with no successes. he started the PF drug last wednesday and we're monitoring your posts scohn for information about what to expect! he just started the leg pains sunday and has been miserable!! a hot bath helped. a couple of beers helped too!! ibuprofen and aleve didn't do anything.

his worse symptom (and what got him to the dr in the first place) is a HORRIBLE cough. we've tried everything and nothing helps. about the only thing is sucking on hard candy (peppermints mostly)

i wish all of you on here the best.... this is a crazy roller coaster ride we're on isn't it.

catdander
Hi Lynn and Pete,

Hi Lynn and Pete,
Wecome to Grace. I'm so sorry to know about your husband's diagnosis. It is a crazy ride, no doubt! Scohn has been a great help I'm absolutely sure to others, most people tend to stay in the shadows but we welcome and encouraged everyone to participate. The shared knowledge can lead to big change.

Don't miss scohns other posts.

Keep us posted and best of luck.

Janine

scohn
Frustrating week.

Frustrating week.

My wife went in for her weekly check-up that included the report on the CT Scan, and was told that everything was still shrinking. When she got home, she handed me the report - which I noticed had been that of last month's CT scan. After about a week, we finally got the report of this month's CT scan, which showed that although the liver lesions had still decreased slightly, there appeared to be a slight increase in the main lung lesion. Our understanding was that they were going to change to a maintenance dose once the tumor got to that point, but didn't, giving her a full dose of the drug, apparently due to reading the wrong CT scan. The report did say there was some increased atelectasis which made the tumor size hard to measure, but the frustrating part was that nobody was getting back to us for several days about the apparent discrepancy.

She has an appointment with the clinical trial nurse this Wednesday so we'll see what happens.

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla.

catdander
Hi

Hi

I know how aggravating miscommunication can be but it sounds like nothing harmful has happened. Even if the scan report noted a small increase in the size it could be attributed to the difference of the cut at which the particular x-ray was taken that makes the tumor appear larger or even easily be the reading itself. Neither of those are unusual. Dr. West has stated several times that if you have to sqent to see a difference it's probably not enough of a difference to change direction over.

I'm sorry y'all are having a bad week and hope to gets better soon.

Best to you both,
Janine

scohn
Thanks Janine. I'm sure we

Thanks Janine. I'm sure we'll get through it, but these days any increase, especially when the Dr. wasn't there to explain it, brings back those anxieties. Hopefully the Dr. will get back to my wife this week and let her know what's what.

Hi lynnandpete!
I am so sorry for your husband's diagnosis, and that the first few treatments didn't work. I'm also sorry I missed your earlier post - I would have responded sooner. I hope it helps (I know it does for me) that you're not alone, and that there are other POSSIBLA (what my wife and I made up and call the drug) patients out there. The support and encouragement of others has been a big help for me. Is your husband also on PTK7 targeted PF-06647020 or is it a different Pfizer drug?

Don't know if the side-effects will be the same (they tend to vary somewhat for each person I suspect) but here's a few thoughts.
My wife's main nerve pain generally lasts about 5-10 days and starts about 4-5 days after treatment (although oddly on a couple of treatments they started about a week later than that). The pain definitely got a little worse each time, but she started taking gabapentin about the 4th or 5th treatment, which has definitely made the pain very manageable (she is currently on 600 mg - 300mg 2x a day). She's also on acupuncture, although she never tried the beer!

My wife also had a terrible cough, and the only thing that has seemed to control it when it came back was some over the counter dextromethorphan tablets. Sucking on riccola or other strong cough drops only helped temporarily.

The only other side-effect I should mention is a rash. Somewhere around the 6th or 7th treatment she started to get a very itchy rash (same timeframe as the pain - about 5-6 days afterwards) for which she now takes some low dose steroids.

Best of luck in managing the side effects, but more importantly I hope that POSSIBLA works well for your husband, and for a long time.

Sending love, prayer, and hugs to you both,
scohn

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla.

lynnandpete
thanks scohn. yes pete is on

thanks scohn. yes pete is on the same PTK-7 drug as your wife. he started the leg and back pains about 4 days after the first treatment and after 7 days, it's getting better. dr is talking steroids after the next infusion to hopefully help with the pain. i'm nervous about him developing a rash since he had an allergic reaction to the first infusion. luckily iv benadryl and hydrocortisone took care of it, but it was a little scary. next time they'll give those drugs first and infuse slower so hopefully that won't happen again.

do you know anyone else on this particular trial?? would you be interested in meeting sometime?? we're at U of C every wednesday.....at least for the next 4 weeks until he gets his first CT...

sorry about your CT scare....hoping it's just a scare and nothing "real"

thanks for your response....we really appreciate your insight...

catdander
A real issue for people

A real issue for people getting scan results is that sometimes they get the report before seeing the oncologist. This can cause a lot of unwarranted anxiety. Dr. West has said he tries to schedule scans and followup appointments the same day to keep scanxiety to a minimum. Not all or maybe not most oncs are able to schedule same day because of how and where the scans are read, who owns the scanning equipment, when reports are made and so on. My husband's cancer center is located within the same hospital that owns and does the scans and the scheduling is an integrated system but I do make sure the followup appointment is as close to scans as possible, usually 2 days after the scan, always in the same week.

scohn it appears there were other circumstances making this go round even more stressful so don't know if any of this is helpful. Just know I'm rooting for y'all and hope everything is steady going.

Janine

scohn
Hi Janine.

Hi Janine.

Yes, my wife's clinical trial oncologist (and her regular oncologist) always meet to go over the CT scan results prior to them being released. We really like that approach. It was just that in this case the doctor went over the previous scan results instead of the current one.

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla.

scohn
All is good now. Thanks for

All is good now. Thanks for all the support during an anxious week. The nurse navigator apologized for the situation (even though she had been out of town and didn't have anything to do with it) and said she would always be available for any and all questions we have. The clinical trial nurse said that they are not at all concerned with the apparent minor increase in the lung at this point, especially with the liver lesions still decreasing and no new lesions appearing, and that the treatment will be continued as normal. The clinical trial doctor is currently out of town and will talk to us in a couple of weeks when she gets back. The U of C team has actually been really great, but when it comes to cancer these minor "blips" can still get to you….

lynnandpete - my wife is usually at U of Chicago on Wednesdays as well, although I think she is going on Thursday next week because of Yom Kippur. Her appointments are usually in the morning, although on the days of the infusion it is most of the day.

She also was given some steroids for the nerve pain at first (hers is mainly in arm instead of leg) as they thought it might be inflammation from the drug. The steroids didn't really have any effect on the pain, but the gabapentin seems to do pretty well. If you similarly find the steroids are not doing anything for the pain, you might want to check with the doctor regarding whether gabapentin would be appropriate or not.

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla.

JimC
Hi scohn,

Hi scohn,

Good to hear that you have worked out the issues and that your wife remains on course with the clinical trial. I think it would be great if you and lynnandpete can meet up at U of Chicago to compare notes. I've met several GRACE users in the "real world" and always enjoyed putting names to faces.

I lived all of my life in Chicago prior to moving here to Ohio four years ago, and my late wife's oncologist, Thomas Hensing, is affiliated with the U of C, although we saw him at another hospital closer to our home. A terrific doctor and person.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

lynnandpete
hi again scohn.....got

hi again scohn.....got another question for you: did your wife have any stomach problems with this drug? pete had a horrible time with constipation and then severe stomach pain in the last week and 1/2. in fact, we got to visit the emergency room twice in the last 2 days trying to figure out what's going on. :( the best they can guess is that the ibuprofen/aleve he was taking for the leg and back pain caused stomach irritation. just curious if you've experienced this or if this is a "new" side effect. thanks!

scohn
Hi lynnandpete!

Hi lynnandpete!

I'll check, but my wife has not had much digestive problems with this drug. She had a lot with the Opdivo, and had some reflux heartburn and digestive problems when she was on the steroids when she took Carbo/Alimta, but on this drug the digestive issues have been mostly well under control. I would check with your oncologist to see what they think. I believe that, as there often is, the side effects of this drug vary quite a bit from patient to patient. At least with my wife the general trend seems to be the same, where the side effects start about 4-5 days after the main infusion of drug, last for about 10-14 days, and then ease up just in time for the next treatment. The gabapentin has worked great for her in reducing the nerve pain, and we're still working out the right timing/dosage for the steroids to help with the itchy rash.

Not sure if any of that info was of help to you - but we'll be thinking of you, and hope to meet up some time!

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla.

lynnandpete
thanks scohn. I think we've

thanks scohn. I think we've decided that this stomach pain is actually referred pain....caused by either the lung tumors or enlarged lymph nodes pressing on one of the nerves leading to the stomach. the doctors didn't come up with that, but a friend who's a pathologist did and it fits the bill perfectly! (so that's my story and i'm sticking to it!!!) either way, small amounts of Vicodin are helping tremendously with the pain, so we're both happier now than we have been for over a week! thanks again for your help and wishing you all the best....

catdander
Lynn, It's great to hear

Lynn, It's great to hear Pete is feeling so much better! :) I'm a true believer that staying comfortable helps one live longer and happier. Actually there's a pretty big study out 5 or so years ago that suggests palliative care beginning at diagnosis gives a significant (used as a trial term) survival benefit. Dr. Pennell and West have a great discussion about it, http://cancergrace.org/cancer-treatments/2010/07/30/is-palliative-care-g...
Even if a specified palliative care team is not available where you are (as it wasn't for my husband) it's a goal for which you as a care giver are reaching.

Go care-givers! and take care of yourself, I know how easy it is to skimp on taking care of yourself.
Janine

scohn
OK - latest update.

OK - latest update.
The CT scan shows the main lung tumor is starting to grow again at the normal rate, but the liver lesions are essentially stable (a little growth in one, a little shrinking in the other). So my wife had another POSSIBLA treatment for the moment.

However, the basic idea is that the clinical trial doctor thinks it is time for a change of treatment. Not sure what it will be yet, but it may be a trial drug that I had stumbled upon a couple of months ago and showed my wife a couple of weeks ago when we thought POSSIBLA was losing its oomph. It's a drug that they just started doing Phase I trials on in Denver (and elsewhere) and will be available in Chicago in a couple of months (with the same trial doctor we have here in charge of the Chicago site). It is a new drug developed specifically as a TKI for HER 2 Exon 20 mutations (and EGFR Exon 20 mutations). So we are talking tomorrow with my wife's regular doctor about the possibility. According to my wife (I wasn't there) the trial doctor at U of C thinks it may be a good next option.

Another possibility brought up by the doctor was a couple more rounds with POSSIBLA, and if it is still showing growth in the main tumor, stability or shrinking in the liver tumors, and no new metastases, then doing a PET scan and if it only shows up on the main tumor doing some local radiation. The trial doctor said even if the PET scan shows only activity of the lung tumor, surgery is probably not really an option given the area of partial lung collapse around the tumor being close to the main bronchial tube (or something like that). I suspect if that ever got to be even close to an option we would be conferring with the pulmonary surgeon.

So that's mainly it - probably nearing the end of the road with POSSIBLA alone and looking towards POSSIBLA and radiation, or AP32788 (we're going to need another name…). Perhaps our talk with the regular oncologist tomorrow will cheer me up from the election.

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla.

catdander
Hi scohn, I'm sorry ya'll

Hi scohn, I'm sorry ya'll are seeing some progression but it's great the trial docs are thinking about local treatment for the persnickety part if the the rest behaves appropriately. You want to squeeze as much out of that treatment as possible. I know what you mean about the election, I appear to be taking it rather hard. For a pick-me-up you might want to check out dorie4's latest post. It made me happy.

Hoping for the best,
Janine

lynnandpete
scohn, so sorry to hear about

scohn, so sorry to hear about the progression, but the fact that there's another possibility waiting in the wings already with a new drug that targets her specific gene profile could be very promising! will keep hoping for you.

we just got the results of the CT after the first 2 treatments and the majority of the tumors and lymph nodes appear unchanged. some of the smaller ones still grew, but apparently the sheer number of tumors is making it hard to measure accurately. :( so pete got another dose of possibla Wednesday and now we battle the stomach pain and fatique again. he's switched from Vicodin to gabapentin and that seems to be helping.....or maybe he's just not awake long enough to notice the pain!!

to make things just a little more exciting, I've come down with what we thought was pneumonia but is so far only severe bronchitis. with a very low oxygen level and very high blood pressure, I was having a terrible time breathing the last few days! with an inhaler and some steroids, at least i'm headed in the right direction. one of us needs to be able to breathe around here!

catdander
Lynn, just want to lend my

Lynn, just want to lend my support. So...get well soon. Perhaps Pete's body will regulate itself in a way that adjusts to gabapentin so not to cause so much sleepiness. My husband takes it as well and seems to adjust after a time (though his adherence to consistent use is lacking).
I wish there was more to do to help. Keep living life,
Janine

scohn
Lynn and Pete,

Lynn and Pete,
Sending healing hugs for a quick recovery of the bronchitis! I am glad the gabapentin seems to be helping - It made a lot of difference for my wife's nerve pain.

I am sorry to hear the POSSIBLA (glad to see our name is catching on) didn't seem to have much effect in the first two treatments. Hopefully it will help in the next one. We'll keep the two of you in our hearts and prayers for the ADC to start kicking in and working!

As for us, the regular oncologist also thinks the new trial would be a good thing to try and get into. (But then we would have to come up with a new drug name.) My wife scheduled the PET scan before we go to Denver to see family after Thanksgiving, in order to assess the degree to which POSSIBLA tamped down the cancer. At that point we would see if radiation was an option, but at the same time we are trying to organize the possibility of the new trial drug. It basically is thought to work the same as afatanib (which my wife already has approval for if needed) only better (less side effects as it works more specifically on the mutated cells and less on the normal ones). One issue we hadn't considered that the oncologist brought up is that if we irradiate the main tumor first we would need to check if we would still be eligible for the new trial study as it would make the tumor a poor candidate for trial study measurement since much of the tissue would be dead and the size and shape changes over time.

So, the next month or two will be filled with decisions for us as we determine all of our options.
We look forward to Thanksgiving with all our kids (and our new in-laws will be there as well) followed by a niece's Bat Mitzvah and then my Dad's gravestone unveiling - hard to believe it has already been a year.

But, except for my wife's cough which has definitely returned, she feels good (other than the election….)

Best wishes to all for a Thanksgiving full of family, and love, and friendship.

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla.

scohn
Just got the PET results back

Just got the PET results back - here's the upshot.
Between the Carbo/Alimta and the POSSIBLA the cancer was pounded down, but not out.
The number of liver lesions appear to be down, but metabolically active cancer still in the liver, the lung tumor, and (disappointingly) the three bone lesions that had all shown bone repair and we thought were gone.
So, good news - no new metastases, and lesions are smaller than when we started - Bad News - all the old ones, while much smaller, are still active, and if the last CT is holding true the main tumor at least, and possibly one of the liver lesions, is starting up again. It seems as though each new treatment, when effective lasts for about 6 months, and then.....

So, my wife has an appointment for Monday with the next (last?) dose of POSSIBLA, but it looks like we are destined to see if we can qualify for the next trial drug, a HER2 inhibitor, for which the trial is currently ongoing in Denver, and will soon be coming to Chicago. If she can't get into the trial for some reason, she will likely be switched to afatanib. Take a deep breath and onward we go! Looks like the next month or so will be destined for another transition.

But no worries - she still feels great, we've got a lovely Thanksgiving weekend planned with all the kids and the new in-laws coming in. We are blessed with friends, family, and love - and for that, Thanksgiving still warms the heart.

Warmest wishes to everyone out there in CG-land, and may your Thanksgivings be filled with all the blessings of love your heart can hold.

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla.

lynnandpete
dear scohn, with the holidays

dear scohn, with the holidays obviously comes new hope and a new perspective. we wish you the absolute best possible news and promise for new effective treatments. you are strong and have gotten thru many, many things....you can do this next hurdle too!!

things here unfortunately, aren't going very well. I ended up spending 5 days in the hospital last week with pneumonia and partially collapsed lungs!! just what we needed!! oh well, none of us gets to pick the timing of our troubles do we! i'm home now and recovering slowly. pete has also made a huge decision he will no longer be participating in the possibla trial at the univ of Chicago. the back/leg/stomach pain plus the crushing fatigue has finally taken its toll and he is opting for quality vs quantity from this point on. our hope is that the longer he's away from the drug, the better he'll start to feel so that we can enjoy the holidays and go on a few trips and have some fun. his new oncologist also said that there's a drug that was approved only 2 weeks ago that is opdivo-like and that pete could possibly try that once the possibla is out of his system. he truly doesn't think it'll help (since pete has done many months of opdivo as well as the opdivo/urelumab trial with no success) but it's worth a try. so we look forward to feeling better and enjoying the time we do have.

in the meantime, we hope and pray for you and everyone here for a happy holiday season with visions of healing dancing with the sugar plum fairies and whoever else makes magic happen!!

JimC
Hi scohn,

Hi scohn,

Thanks for the update, although I'm sorry to hear that the scan results aren't what you would like them to be. It can be tough to find a treatment that will provide a durable response, but until you do it's good that your wife's cancer seems to respond to each new line of treatment, at least for a period of months, and that she is feeling good. Hearing of your Thanksgiving plans with family gives me one more reason to be thankful on this special day dedicated not just to feasting and watching football, but to celebrating each moment as a unique and wonderful experience.

I always think of everyone who visits GRACE, no matter where they may live in this world, as part of an extended family, and I'm glad that your branch of the that family will be celebrating together tomorrow.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

JimC
Hi lynn,

Hi lynn,

I'm sorry to hear of your hospitalization, and I hope that your recovery speeds along. As far as Pete's break from treatments, it sounds like a good idea, because as you know continuing treatments for long periods of time can be so tough. I hope you can enjoy every upcoming moment together without much thought of doctors or treatments or appointments, and that Pete will feel much better for it.

Have a Happy Thanksgiving.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

scohn
JimC - thanks for the warm

JimC - thanks for the warm words of community. It's always nice to know that there are people out there in a connected community of caring. I hope you will be having a wonderful Thanksgiving as well.

Lynn - so sorry to hear of your pneumonia. Glad you are out of the hospital and on the mend. And I hope Pete will begin to feel better as well as he gets more of the POSSIBLA out of his system, and that your holidays will be that much brighter for both of you. Thank you so much for your kind thoughts as well. From the moment my wife got her diagnosis we have found so many people going on so many different journeys. It helps to know there are others out there rooting for you! And healing dances of sugar plum fairies sounds awfully nice for everyone.

All the best, scohn

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane. 7/19 start Kadcyla.

jlpavlik77
Hi there. I am new to this

Hi there. I am new to this page, I have found your thread encouraging. My dad, 62, non smoker, lifelong health nut and distance runner was diagnosed in April with stage IV nsclc after he had been self diagnosing himself with asthma for about 2 months. He has metasteses on his liver, kidney, sternum, femur, L5, T12, and some lymph nodes. He received 5 treatments of Carbo/Taxol and Avastin before the neuropathy became too severe. The chemo held the cancer, but no shrinkage. He then went on avastin maintenance, but after 2 treatments the cancer grew slightly. He just had his first dose of Opdivo and will have his 2nd Tuesday. Last night it seemed the neuropathy was the worst that it has been. He couldn't walk and could only sit at the table long enough to eat Thanksgiving dinner. It is heartbreaking to watch this man who has been so active not even be able to walk. I am curious if the Opdivo is worsening the neuropathy. The dr wanted 4 treatments over 8 weeks, but I don't know if he will be able to tolerate that. Now he told my mom he is uncertain that he would try a clinical trial. He seems so sad and hopeless. I don't know if this is the right place for this discussion, I just want him to see that clinical trials can be beneficial, and that it isn't time to give up. Thank you.

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