Luke's dad

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May 4, 2014 at 2:13 am  #1263588    

Luke

Hi all

Looks like I haven’t updated for a while and here’s the latest: most recent scan revealed stable disease with the exception of a new non-specific lung nodule. Keeping a keen eye on this one; we will know more from the next scan.

The other thing I wish to consult the faculty on is this: the Novartis trial has a very stringent requirement of performing CT scans every 2 months. This is inevitably straining the kidneys, causing creatinine levels to stray out of the normal range (usually outside maximum normal range by 5 – 10).

As a result, we have opted to perform CT scans without the use of a tracer. Of course, this has led to a wall of disclaimer text in the scan report regarding how without tracer use, things don’t show up as well as they should etc.

My question is whether you see any significant relative benefits to performing CT scans without the use of tracer in this context. I suppose another way of asking the question is whether the benefit of kidney strain reduction is sufficiently significant to justify taking the tracer out of the scan?


Dad (then 63) dx Stg.IV lung adeno with brain mets in 2011. EGFR / ALK negative. BRAF positive.
First line: Carbo+Gem / WBRT
Maintenance: Alimta
Second line: LGX+MEK clinical trial
Third line (present treatment): Keytruda

May 4, 2014 at 7:02 am  #1263590    
JimC Forum Moderator
JimC Forum Moderator

Hi Luke,

Great to hear a good update on your Dad.

Regarding non-contrast CTs, Dr. Pinder has said:

“If I think the kidney function is elevated because of dehydration, I will usually hydrate the patient, repeat the creatinine and proceed if safe. I also have many patients with chronic kidney problems where the issue is not hydration. In these patients, I usually follow them with non-contrast CTs. A non-contrast CT usually provides sufficient information to make decisions about therapy.”http://cancergrace.org/forums/index.php?topic=6666.msg46882#msg46882

In the same thread, Dr. West added:

“I agree that CT scans with contrast are often ideal but not necessarily necessary, especially to follow disease that you’ve already identified. Chest lesions are often perfectly manageable to follow without contrast. Liver lesions are often easier to follow with contrast, but you can generally get a decent sense of things from a non-contrast CT, or else you could potentially do a PET/CT to get more information without contrast — though I generally follow metastatic disease with conventional CT scans and not PET scans.

Of course, as Dr. Pinder said, if the renal function is more reversible, adding hydration and time to improve it is the easiest option.

Overall, though, I can’t recall having a patient in whom I just didn’t think I could adequately assess the extent of disease because of a lack of ability to give contrast.”

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

May 4, 2014 at 10:09 am  #1263597    

Luke

Thanks so much for this Jim!


Dad (then 63) dx Stg.IV lung adeno with brain mets in 2011. EGFR / ALK negative. BRAF positive.
First line: Carbo+Gem / WBRT
Maintenance: Alimta
Second line: LGX+MEK clinical trial
Third line (present treatment): Keytruda

May 4, 2014 at 3:31 pm  #1263602    

laya d.

Thanks so much for the update, Luke. . .and “stable” is a VERY good thing. . .

xoxo,
Laya


1/10 – My Mom (58) dx w/ NSCLC-Adeno 3a; 1 cycle of neoadjuvent Carbo/Alimta before finding out EGFR+ (Ex. 19), then switched to 7 wks of neoadjuvent Tarceva/150 mg (major shrinkage); 4/10 – right pneumonectomy; 6/10 started 3 rounds of adjuvent Cis/Alimta w/ concurrent chest radiation (7 wks); 8/10 – NED; 11/10 – small nodule in left lung; 1/11 – 3 small nodules in left lung, start Tarceva/100 mg; 4/11 – suspected sclerotic met to hip, continue w/ Tarceva, add XGEVA, brain MRI clear; 9/11 – solitary 3 cm met (adeno w/ T790m mutation) to cerebellum, surgery and gamma knife, up Tarceva to 150 mg; 11/11 – 2 left lung nodules growing, biopsy on 1 shows mutation from adeno to squamous (shocker!), brain MRI clear, continue Tarceva & Xgeva; 2/12 – brain MRI clear, CT scan, remaining nodule slightly bigger – – monitor for now, Tarceva (reduced to 100 mg) & Xgeva continued; 4/12 progression and rebiopsy (confirmed adeno), stop Tarceva, switch to Carbo/Alimta; 6/12 maintenanceAlimta; 8/12 back to Tarceva; 10/12 Gemzar; 11/16 difficulty breathing; 12/12 hospice initiated…my Mom passed away peacefully on 12/19/12. Heartbroken.

May 4, 2014 at 5:03 pm  #1263604    
Dr West
Dr West

Jim provided the key info. All else being equal, I think it’s better to get more information, and I don’t favor holding contrast just based on a potential for kidney problems. However, if someone is demonstrating actual problems, the incremental value of the contrast isn’t huge, and I have no trouble withholding it.

In general, my perspective is that you prioritize the more immediate problem over the more theoretical one. If the issue is a concept of risk of kidney damage, the real concern of optimizing follow-up of the cancer takes precedence. If the kidney issue is actually present, the equation shifts more toward avoiding more kidney damage if the contrast isn’t critical, and it often isn’t.

Good luck.

-Dr. West

May 8, 2014 at 7:59 am  #1263662    

marisa93

Stable is great news!!!!!!


Nov 23, 2010 husband(49/smoker) dx IV NSLC mets to brain/liver, Nov-Dec, 2010 15 WBR tx, Jan’11 MRI much improved, Dec ’10-Mar’11 4 txs carbo/alimta/avastin w/good response, Apr ’11 MRI mets almost gone, Apr ’11 start maintenance alimta, Jul ’11 MRI still good, Jul ’11 carbo/taxol for new lung met and 2 liver mets, Oct ’11 MRI new brain mets and major progression in liver, Nov 2, ’11 GK, Nov 19, 2011 at peace
Since then: http://cancergrace.org/forums/index.php?topic=11426.0

May 8, 2014 at 8:15 pm  #1263673    

double trouble

Oh Luke! I am so happy to hear your father is stable. Contrast gave me palpitations, so my onc. used to follow me without it. He was quite satisfied with the information provided.

Here’s to many more stable updates! With much love and utter respect…
Debra

June 9, 2014 at 4:48 am  #1264267    

Luke

So the scans came back today: the non-specific lung nodule from 2 months ago has resolved. Otherwise, stable disease!

This BRAF therapy is really a miracle for us… come August, we will be 3 years post diagnosis.


Dad (then 63) dx Stg.IV lung adeno with brain mets in 2011. EGFR / ALK negative. BRAF positive.
First line: Carbo+Gem / WBRT
Maintenance: Alimta
Second line: LGX+MEK clinical trial
Third line (present treatment): Keytruda

June 9, 2014 at 6:21 am  #1264269    
JimC Forum Moderator
JimC Forum Moderator

Hi Luke,

Great news on your Dad’s scan results! We definitely like stable, and hope it continues for a long, long time!

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 9, 2014 at 6:51 am  #1264270    

double trouble

Wonderful news Luke. you deserve it.
Debra

June 9, 2014 at 8:45 am  #1264274    

marisa93

Great news!!!!!


Nov 23, 2010 husband(49/smoker) dx IV NSLC mets to brain/liver, Nov-Dec, 2010 15 WBR tx, Jan’11 MRI much improved, Dec ’10-Mar’11 4 txs carbo/alimta/avastin w/good response, Apr ’11 MRI mets almost gone, Apr ’11 start maintenance alimta, Jul ’11 MRI still good, Jul ’11 carbo/taxol for new lung met and 2 liver mets, Oct ’11 MRI new brain mets and major progression in liver, Nov 2, ’11 GK, Nov 19, 2011 at peace
Since then: http://cancergrace.org/forums/index.php?topic=11426.0

June 9, 2014 at 5:15 pm  #1264306    

laya d.

YAHOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!!

xoxo,
Laya


1/10 – My Mom (58) dx w/ NSCLC-Adeno 3a; 1 cycle of neoadjuvent Carbo/Alimta before finding out EGFR+ (Ex. 19), then switched to 7 wks of neoadjuvent Tarceva/150 mg (major shrinkage); 4/10 – right pneumonectomy; 6/10 started 3 rounds of adjuvent Cis/Alimta w/ concurrent chest radiation (7 wks); 8/10 – NED; 11/10 – small nodule in left lung; 1/11 – 3 small nodules in left lung, start Tarceva/100 mg; 4/11 – suspected sclerotic met to hip, continue w/ Tarceva, add XGEVA, brain MRI clear; 9/11 – solitary 3 cm met (adeno w/ T790m mutation) to cerebellum, surgery and gamma knife, up Tarceva to 150 mg; 11/11 – 2 left lung nodules growing, biopsy on 1 shows mutation from adeno to squamous (shocker!), brain MRI clear, continue Tarceva & Xgeva; 2/12 – brain MRI clear, CT scan, remaining nodule slightly bigger – – monitor for now, Tarceva (reduced to 100 mg) & Xgeva continued; 4/12 progression and rebiopsy (confirmed adeno), stop Tarceva, switch to Carbo/Alimta; 6/12 maintenanceAlimta; 8/12 back to Tarceva; 10/12 Gemzar; 11/16 difficulty breathing; 12/12 hospice initiated…my Mom passed away peacefully on 12/19/12. Heartbroken.

June 9, 2014 at 8:48 pm  #1264318    
Dr West
Dr West

That’s truly wonderful news! Thanks for the update.

-Dr. West

August 1, 2014 at 10:26 pm  #1265228    

Luke

Exactly 3 years ago today, my dad was diagnosed with cancer. Confusion, anger, helplessness – these were just some of the emotions afflicting me, especially during the early stages of the journey. I generally have a more peaceful perspective of the situation these days; but there are still nights when I find my mind wandering in circles, asking myself how much longer stable disease can endure and other painful ‘what-ifs’. It was at this dark place where the previously incoherent final sentences of Samuel Beckett’s The Unnamable began to make some sense.

I know things can never be perfect like the way they used to be before diagnosis. Even so, I can find things for which I am thankful today. GRACE is among the top of the list. The cutting edge knowledge I learnt here has enabled me to engage and, on more than one occasion, keep my dad’s oncologist on his feet as to his treatment recommendations. I am also grateful for the friendship and support I get from the other patients and caregivers here.

Here’s to continuing and durable response for everyone who needs it!


Dad (then 63) dx Stg.IV lung adeno with brain mets in 2011. EGFR / ALK negative. BRAF positive.
First line: Carbo+Gem / WBRT
Maintenance: Alimta
Second line: LGX+MEK clinical trial
Third line (present treatment): Keytruda

August 2, 2014 at 8:07 am  #1265231    
catdander forum moderator
catdander forum moderator

Luke, I couldn’t agree more. D’s dx was almost 5 years ago. I hope your dad meets then exceeds 5.
Thanks for the encouragement and companionship. Grace is an incredibly significant force in my life and I feel so lucky to have this community in my life.

August 2, 2014 at 5:25 pm  #1265241    
Dr West
Dr West

Congratulations! And thanks so much for your kind words about GRACE and the community here. We truly appreciate them.

-Dr. West

May 18, 2015 at 6:56 am  #1269572    

Luke

Wow, look how time flies! It’s been awhile since I last posted, and I thought it would timely to report that my dad’s latest scan came back and like the previous reports – stable.

I hope everyone’s been keeping well. Come 1 Aug, we will be at our 4th year mark.


Dad (then 63) dx Stg.IV lung adeno with brain mets in 2011. EGFR / ALK negative. BRAF positive.
First line: Carbo+Gem / WBRT
Maintenance: Alimta
Second line: LGX+MEK clinical trial
Third line (present treatment): Keytruda

May 18, 2015 at 8:16 am  #1269576    
JimC Forum Moderator
JimC Forum Moderator

Hi Luke,

That’s just terrific news, and thanks for sharing his great scan results!! Keep up those good reports, and best to you, your dad and your family.

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

May 18, 2015 at 9:19 am  #1269579    
catdander forum moderator
catdander forum moderator

Fabulous news Luke!
Thanks!

May 21, 2015 at 11:55 am  #1269889    

SoCal

So glad to hear your dad is doing so well, Luke. To give him some encouragement, this month I am six years past my diagnosis and despite setbacks, still doing well. Give your dad a hug for me.
Nan


Dx June 2009 NSCLC adenocarcinoma IIIA with BAC, L upper lobe. 2 cycles cisplatin + etoposide w/25 days RT; PE + other side effects, no change in tumor. Wedge resection of L lower lobe & nodes: EGFR mutation (19). 3 mo. Tarceva in 2010, tumors grew; 3 mo. Alimta, no change. “Watch and wait.” Stable 3+ years. Thyroid cancer early 2013 (surgery and rad). Lung CT 9/2013: tumor growth. Left upper lobectomy, left lower wedge + nodes; status: T4 N2 M1a. Breast cancer dx’d 12/2013: HR+, HER-2 negative. Mastectomy 2014. 5 new small lung tumors in fall 2014: right and left lobes, pleura. Restarted Tarceva. 77-Y/O female ex-smoker (quit in 1982) with lupus. Overall, doing fine.

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