Update on Clinical Trial

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

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

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July 6, 2016 at 1:56 pm  #1274599    
catdander forum moderator
catdander forum moderator

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


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?

August 17, 2016 at 10:36 am  #1288336    

scohn

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, 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

August 17, 2016 at 2:57 pm  #1288338    
catdander forum moderator
catdander forum moderator

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.


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?

August 17, 2016 at 4:04 pm  #1288339    

scohn

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, 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

August 17, 2016 at 4:14 pm  #1288340    
catdander forum moderator
catdander forum moderator

TUMORSKIDOO HA


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?

August 17, 2016 at 4:20 pm  #1288342    
Dr West
Dr West

Great stuff!

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

-Dr. West

September 27, 2016 at 5:15 am  #1288751    

lynnandpete

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.

September 27, 2016 at 12:39 pm  #1288758    
catdander forum moderator
catdander forum moderator

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


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?

October 3, 2016 at 8:19 pm  #1288851    

scohn

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, 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 6 months, 3 weeks ago by  scohn.
  • This reply was modified 6 months, 3 weeks ago by  scohn.
October 3, 2016 at 8:45 pm  #1288853    
catdander forum moderator
catdander forum moderator

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


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?

October 3, 2016 at 9:44 pm  #1288854    

scohn

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, 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

October 4, 2016 at 10:03 am  #1288857    

lynnandpete

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…

October 4, 2016 at 11:15 am  #1288859    
catdander forum moderator
catdander forum moderator

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


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?

October 4, 2016 at 1:09 pm  #1288861    

scohn

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, 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

October 6, 2016 at 11:45 am  #1288876    

scohn

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, 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

October 6, 2016 at 2:56 pm  #1288877    
JimC Forum Moderator
JimC Forum Moderator

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


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

October 8, 2016 at 6:58 pm  #1288891    

lynnandpete

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!

October 11, 2016 at 12:16 pm  #1288897    

scohn

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, 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

October 11, 2016 at 7:09 pm  #1288903    

lynnandpete

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….

October 12, 2016 at 10:44 am  #1288909    
catdander forum moderator
catdander forum moderator

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-giving-up/
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


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?

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