Dreading today's appointment -- anyone have any advice?

[MyMother'sDaughter]

My mom was diagnosed September 2017 with NSCLC. She was really sick at the time -- couldn't breathe, losing weight, mentally out of it. She slept all the time. After a workup and spending weeks in the hospital with a pleural effusion and a pulmonary embolism she came home to my house with a Plurex catheter. She was draining 400 ccs at first. Once the effusion and blood clot was gone she started feeling better. She qualified for immunotherapy due to her PL1 percentages -- about 70% . She went on Keytruda for about three months and felt well enough to go home! The tumors were shrinking -- but then they started growing again. The doctor took her off Keytruda and put her on carboplatin and pematrexed. She's been on that now for about six months. Before her last appointment the doctor said we would take her off carboplatin if she was "stable" and just do maintenance of the pemetrexed. We would find out, he said, after her next set of scans, taken last Monday. Well, here are her latest scan results. Can anyone give me any words of wisdom? What would you suggest? I feel like she should try and get in a study. I'm not ready to give up this fight, and I know she isn't either. Her last scan was in July, BTW. 

LUNGS/AIRWAYS: Unremarkable. For example:
* Right lower lobe subpleural mass with adjacent atelectasis slightly increased measuring 3.2 x 2.8 cm, previously 3.2 x 2.3 cm
* Right posterior upper lobe opacity measuring 1.7 x 0.7 cm, unchanged
* Masslike subpleural consolidation in the medial basal right lower lobe measures 3.2 cm, unchanged
Slightly decreased focus of interstitial thickening/consolidation in the medial basal segment of the left lower lobe. No new suspicious nodules.

PLEURA/PERICARDIUM: Unchanged right pleural nodular thickening predominantly in along the lower lobe. Unchanged small loculated right pleural effusion. 

Increase in size of nodule and right oblique fissure measuring 1.5 x 1.4 cm, previously 1.2 x 1.2 cm. No left pleural effusion.

MEDIASTINUM/THORACIC NODES: Increase in adenopathy. For example:
* Paratracheal measuring 3.0 x 1.9 cm, previously 2.1 x 2.1 cm
* Paraesophageal measuring 3.8 x 2.6 cm, previously 2.8 x 1.5 cm
* Right supradiaphragmatic measuring 3.8 x 2.8 cm, previously 3.8 x 2.1 cm

Thanks. Obviously, we will discuss with the doctor but I was hoping to get some thoughts before we go in. I am not telling her the scan report is up. I'm going to let her doctor tell her. I can't work. Hardly slept. My siblings aren't much help. My mother has his own medical issues and my sister just doesn't get involved. 

[BridgetO]

Hi and welcome,

Your idea of a study or clinical trial is a good one if your mom wants to do this,.  If she is not wanting to "give up the fight", she should make this clear to the doctor and ask the doctor what treatments  are available. Keep us posted.

Bridget O

[Tom Galli]

Welcome,

Not considering a medical trial, I see three alternatives: treat as chronic disease with pemetrexed; start palliative care; or start hospice care. You didn’t mention your mom’s age or complicating medical conditions which also should be considered as you weigh alternatives. 

Mediastinum growth in 3 months after immunotherapy would concern me. 

Most concerning however is the amount of stress you are absorbing. Please take time to get some rest before your mom’s next consultation. The forthcoming consultation will be important. You should be prepared to help your mom make important decisions. 

Stay the course. 

Tom

[MyMother'sDaughter]

Hi, 

The doctor said the chemo isn't working so we're done with the carbo/pex treatment. He offered a new trial at Sloan called MLN0128, an ATP-competitive mTOR kinase inhibitor. Any feedback on this treatment from anyone? 

 

--KB