TKI stopped after 6 months when GGOs stayed stable

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This topic contains 4 replies, has 3 voices, and was last updated by catdander forum moderator catdander forum moderator 2 weeks ago.

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April 9, 2017 at 5:08 am  #1290545    

lakene

Age 74 F. Swedish

I was diagnosed with stage IV NSCLC ( LPA, EGFR+ Exon 19-) last June, with main tumor in left lung and only one met( in right lung). In addition many ground glass opacities/ nodules in both lungs. Both tumors surgically removed. MRI (brain) and PET/CT in Sept. showed no changes, Afatinib 30mg started in Oct. CT in Dec. showed no changes. Afatinib lowered to 20mg in Jan. CT in April 2017 showed no changes. My onkologist have now terminated the Afatinib and will keep me on surveyance with CT scans every 3 months. I have read Dr. West’s proposed algorithm for management of asymptomatic multifocal BAC and understand that I should not have been treated with afatinib until diffuse progression. But now when I have taken it for 6 months, is it standard protocol to stop the medication when there is no progression?
Thanks
Lakene

April 9, 2017 at 9:13 am  #1290546    
catdander forum moderator
catdander forum moderator

Hi Lakene,

Welcome to Grace. The easy answer is no it’s not standard to stop treatment and oncologists usually stay on a treatment until progression but there are often reasons to do things off the standard path. The algorithm Dr. West suggests for indolent nsclc such as some forms of BAC isn’t widely used by general medical oncologists who are often not familiar with treating rare indolent/slow growing nsclc. Many maybe most oncologists still treat all nsclc as if it were aggressive (most lung cancer is quite aggressive) and treat continuously. There’s no “standard” of care to look to if an oncologist decides a cancer is indolent and wants to see what happens without treatment. The only way to do this is to stop treatment and watch and wait with frequent CT scanning (every 6 to 12 weeks). No one can guess what your oncologist’s thought process was and the truth about any standard of care in nsclc is there are as many reasons to veer from it as there are people with nsclc it. Talk to your onc about why the decision was made, how it will be monitored. I know this isn’t an answer but if you are watched closely clinically and with scans, let you onc know of any new or worsening symptoms you should catch progression before it’s too late to treat it. On an up side you have time off from treatment and you have that much more time for treatment later.

I hope you do well. All best,
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?

April 9, 2017 at 9:19 am  #1290547    
JimC Forum Moderator
JimC Forum Moderator

Hi Lakene,

[Janine posted while I was writing my response, but I hope my additional comments will add to what she said.}

Welcome to GRACE. It’s great to hear that your cancer has remained stable. As far as stopping Afatinib under these circumstances, there really isn’t a “standard protocol”, but there are factors that may be considered in making that decision. The presence of a metastasis in the right lung is an indication that cancer cells have moved through the bloodstream (resulting in the stage IV classification). Surgery is not usually favored for stage IV lung cancer, but because there was only one metastasis, an exception was made. After surgery, your doctors recommended a systemic therapy (the standard treatment for stage IV lung cancer) to try to eliminate any active cancer cells left over after removing the tumors. In a typical stage IV situation, surgery is not offered and when the initial treatment is chemotherapy, it’s common to receive 4-6 cycles then watch and wait with follow-up scans. With targeted therapy such as afatinib, treatment is usually continued indefinitely. But since your tumors where removed and all that’s left are the GGOs, I would assume that your doctors are treating your cancer in accordance with Dr. West’s algorithm for management of asymptomatic multifocal BAC. That certainly seems to be a reasonable approach in your particular situation.

I hope that your scans remain stable for a very 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

April 10, 2017 at 8:34 am  #1290554    

lakene

Thank you Janine and JimC for your good wishes and fast responses, and that on a Sunday!
My main concern is the risk Afatinib may have caused mutations?
My tumors are referred to as PLA by my doctor here in Europe, although the pathology reports classified the main tumor (G2) as partly acinar and partly lepidic and the metastasis (G1) as acinar with predominantly lepidic growth. Would they still fall under the term BAC as Dr. West understands it, so it makes sense not to treat?

April 10, 2017 at 10:02 am  #1290556    
catdander forum moderator
catdander forum moderator

You’re very welcome Jim and I have both used Grace as a life line of information for our spouses and understand its importance.

Since I’m not a pathologist I have posted a link to the 2014 ncbi article on the subject of how histology in lung cancer was regrouped including BAC. It may take a bit of studying to figure out but I believe the info is there for the finding.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4209385/

As you may find out by reading Dr. West’s latest thoughts about BAC it is rarely pure and is treated on the same wide spectrum as is suggested in the algorithm, depending on where an individual fits between pure BAC and standard adenocarcinoma with the focus on how aggressive it is. As an example of everyone’s is individual my husband had squamous cell nsclc which is usually an aggressive cancer but his was very indolent. You don’t want to assume too much.

As far as how 5 months of afatinib affects you is an answer no one has but I doubt it has done any harm or made you less able to restart it or tarceva or iressa in the future if needed.

Cheers to the best of outcomes,
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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