Wait or not?

Portal Forums Lung/Thoracic Cancer NSCLC Stage IV NSCLC Wait or not?

This topic contains 5 replies, has 3 voices, and was last updated by  cards7up 3 weeks, 3 days ago.

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October 26, 2017 at 4:58 pm  #1293412    

jowjow99

Hi everyone,

My father, age 70, was diagnosed with NSCLC on 10/02/17. EGFR and ALK negative. Brain MRI and bone scan clear. Yesterday’s CT scan showed that his nodule has grown from 1.5cm to 2.5 cm along with more small nodules. My dad is having pretty severe pain in his right rib area when he takes deep breaths. Also, pressure at his first biopsy site. Taking Tylenol around the clock for his pain. One oncologist ordered a second biopsy to check for more genetic/molecular markers and wants to wait for the results before starting any treatment. Biopsy was done today. Results won’t be back for at least 2-3 weeks. A second oncologist wants to start my dad on Keytruda/Alimta/Carboplatin this coming Monday. My dad is extremely anxious and wants to get started ASAP but we are still contemplating on waiting for the genetic testing results to come back. Should we wait? Or start treatment on Monday? HELP!!

I can provide more info if needed…

October 27, 2017 at 6:29 am  #1293413    

cards7up

Have they said what stage he is? If they tested for the mentioned mutations, then he has adeno. More info as far as stage and where else the cancer is. Even a 2.5cm is a small nodule and should not be causing pain.
As for starting treatment, what does your father want to do? No one on staff here can make recommendations
whether he should or not as that is against policy here. But they can give you guidance with more info.
Take care, Judy
P.S. I’m a LC survivor and not employed by GRACE. I just share my knowledge and experience when I can.


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

  • This reply was modified 3 weeks, 6 days ago by  cards7up.
  • This reply was modified 3 weeks, 6 days ago by  cards7up.
October 27, 2017 at 8:23 am  #1293416    
JimC Forum Moderator
JimC Forum Moderator

Hi jowjow99,

Welcome to GRACE. I am sorry to hear of your father’s diagnosis, and I can completely understand the desire to start treatment. On the other hand, you would like to start with an appropriate treatment for his particular cancer. To start, you might want to read Dr. Weiss’ post “An Introduction to Lung Cancer.” He describes the staging process and how it affects the initial therapy decision. In that regard, it would be good to know where the smaller nodules are located and whether there is any spread to lymph nodes or distant organs. Also, when was the previous CT performed; the interval between scans will provide and idea of how fast the cancer is progressing.

As Judy stated, normally a 2.5 cm nodule does not cause symptoms, so it would be good to know whether it is cancer-related. The negative bone scan seems to rule out a bone metastasis to the rib, which could cause the type of pain you describe. Also, if a buildup of fluid around the lung was noted (a “pleural effusion”), that often causes pain in that area, especially upon breathing. Treatment can reduce the amount of that fluid and provide symptom relief, but it’s often necessary to drain the fluid via a procedure called thoracentesis to provide faster pain relief.

You’ve already tested for the two major mutations (EGFR and ALK) which can be specifically targeted with existing, approved drugs. There are others which are less common, and it’s also possible to test for PD-L1 expression, as patients with high expression tend to respond better to immunotherapy. As Judy said, we can’t make a specific recommendation whether to wait for further mutation testing results; that is a question for your father’s doctors. In general, the faster-growing and more symptomatic a cancer is, the sooner you want to start treatment.

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 27, 2017 at 8:38 am  #1293417    

jowjow99

Thank you for your replies. He does have pleural effusion which has increased since his first CT. First CT done on 10/1 and second CT done on 10/24. Nodules along major and minor fissures along the right side. Nodules are all on the right side. Would pleural effusion cause a lot of pain? 4.2 x 1.2cm

In addition to his front right rib area, My dad has pain at his first biopsy site, which is strange. What could be the cause of that since he didn’t have pain there before? He’s had front pain since the very beginning. Possible nerve damage from the biopsy?

PDL1 result is complete, will find out at our appointment in one hour. If higher than 50%, start with Keytruda only. If less, then start Keytruda/carbo/Alimta since he is super anxious and having symptoms of pain.

Does that sound reasonable?

Thank you again for your input!

October 27, 2017 at 9:15 am  #1293418    
JimC Forum Moderator
JimC Forum Moderator

Hi,

Yes, a pleural effusion can cause a great deal of pain. When my wife was diagnosed, she had great pain with every breath, which was relieved quickly when the fluid was drained. Hard to speculate about the cause of the pain at the biopsy site; that’s a question best left for his doctor, who can examine him.

The PD-L1 strategy you’re following sounds perfectly reasonable.

Good luck as your father starts treatment.

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 30, 2017 at 9:24 am  #1293424    

cards7up

Why not ask about draining the pleural effusion? Does he have shortness of breath? This would be a symptom of the pleural effusion. Nerves are rarely hit during a lung biopsy, but ask the doctor about it.
Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

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