Scanxiety and Next Steps

[GBJ]

It has been 4 months since diagnosis - Stage 4 NSCLC with mets to the abdomen (a few nodes there). I have completed 6 rounds of chemo (Pemetrexed and carboplatin) and 5 rounds of immunotherapy (Keytruda) - 15% PDL-1. Now my first scan after the infusions is next week. Fingers crossed and all.

Anyways, wondering what the next steps would be. My oncologist mentioned that I had three options depending on the PET-scan results:

1) Be on maintenance therapy (dropping one chemo drug carboplatin) and continue immunotherapy+1 chemo drug

2) Stop therapy altogether and monitor (assuming if scans are good)

3) Continue with immunotherapy alone till I can bear the costs of it (In India, immunotherapy is not covered under insurance)

Wondering if anyone was told the same.

Also, another question: do they stop therapy if the tumor grows or do they start second line of treatment. I am confused on that. Please advice

[Tom Galli]

GBJ,

Well, I holding out for your number 2--good scans and stopping treatment. I'm learning about survivors on immunotherapy who have a series of good scans and as a result, stop the drug. I supposed the immune system becomes trained to recognize and deal with cancer. So, I'm really rooting for clear scans.

If the tumor grows, most everyone I know has a second line of treatment. You are already on a combination treatment (conventional chemo with immunotherapy). Sometimes a new conventional drug is added as a substitute. You might even continue with your maintenance therapy depending on the degree of progression or growth of existing tumors but that is not likely.

Stay the course.

Tom

[GBJ]

Thanks Tom for the advice and your prayers. I am also hoping for clear scans. You are truly an inspiration.

I have handled the first cycle of chemo and immuno well, no major side effects. I have been active with my regular walking and light exercising. So always wondering what is happening on the inside.

My doctor never mentioned second line of treatment, so was wondering about that.

 

[Judy M2]

GBJ, your doctor is probably focusing on your current treatment plan. Like Tom says, many people get such good results from immunotherapy that they can stop treatment after a while. I hope you get a good scan. 

[GBJ]

Thanks J for the advice.

Thoughts always going around the PET scan results. Anxious as usual.

Here in India, docs do not operate or perform lobectomy  for Stage 4. And radiation was not mentioned by the doctor. Was wondering if people survive long without surgery.  Sorry for bombarding questions on this.

[Tom Galli]

GBJ,

Surgery is "normally" not performed for Stage IV disease. The presumption is that Stage IV needs systemic therapy (treatment all over the body) to be successful. On occasion, and perhaps more frequently now, radiation oncologists are treating certain presentations of multi-focal Stage IV tumors with precision radiation. This type of treatment also holds the benefit of reducing the tumor burden and perhaps minimizing the amount of metastatic activity occurring in tumors. But this treatment is not a standard of care for Stage IV disease. Here is more information about precision radiation techniques used to treat lung cancer.

No need to be sorry about asking us questions. Indeed, this is why we are here. I do hope your scanziety wanes and the PET shows good results.

Stay the course.

Tom

[Judy M2]

GBJ, I've never had surgery for my Stage IIIB lung cancer that was diagnosed in October 2019. Instead, I had chemoradiation and am now on a targeted therapy with very good results. Immunotherapy would not work for me because of my EGFR mutation. 

You can certainly ask your oncologist about the next line of treatment should you have progression in the future. I hope you don't get to that point for a long time. 

[GBJ]

Had my PET scan yesterday after 6 infusions. Almost complete resolution of the nodes and significant reduction in the lesions. Almost 70% reduction in lesion size and significant reduction in metabolic activity (SUV for some reduced to 2.9). Doc said minimal disease now, but wants to continue treatment.

Now on maintenance therapy, have dropped carboplatin and only onAlimta and Keytruda for another 5-6 infusions and then a PET scan.

Staying the course.

[Tom Galli]

GBJ,

Wow! That is an absolutely wonderful report. Dropping carboplatin and Altima for Keytruda alone is a big step and indicates immunotherapy is taking hold and doing its job. Size and SUV reductions are significant indicators.

Take some time to celebrate and stay the course.

Tom

[GBJ]

That time of the treatment cycle when you are anxious about your results. Backstory: Dx with Stage IV A adenocarcinoma Lung in Feb 2022, have completed 6 cycles of carboplatin, 12 of Alimta and 11 of Keytruda by Oct 29. 1st scan showed significant regression in nodes and lesions. Have been on maintenance therapy - carboplatin dropped - since July 2022.

Now 2nd scan scheduled next week and anxiety increases. All parameters are fine, except for Thyroid TSH which was slightly elevated - so the doctor have prescribed Thyroxine for 2 months - one daily.  The thyroid increase is due to the side effects from Keytruda. Receive 3 Filgrastim injections after chemo/immuno sessions for 3 days - though I never needed it, doctor are cautious due to lingering COVID/infection in India. Been fairly active, working 2 jobs to decrease financial burden and mainly to keep my mind of bad thoughts I guess.

Daily take a 4-flight test (walk 4 flight of stairs under a minute without holding a railing). I am able to do that in 30 seconds so it helps me think I am doing okay. I also try 6-8 flights to check for my breathlessness - do have some minor breathlessness when doing 8 flights otherwise okay. Anyways, I try to walk 2-3 miles each day.

Have a cough which comes and goes usually in the morning. Doctors here in India do not prescribe any medication so home remedies - steam inhalation, honey hot water etc is what I take.

Sorry about the ramblings but thought I could share all the activities I have done. Now once I get the scan results, doctors will prescribe next steps. The oncologist here says, irrespective of the results, maintenance therapy will continue  for one more cycle - 6 Alimta and 6 keytruda for every 3 weeks and then another scan.

How long is one prescribed these cycles. I have no idea. Also does progression show up in your daily routines. I would like to believe it should but never know.

Fingers crossed and hope for the best.

[Tom Galli]

GBJ,

Great to hear from you again. 

To your questions: how long is maintenance therapy prescribed and does progression affect one’s daily routines? Maintenance therapy continues until one achieves a no evidence of disease (NED) scan or less desirably, a scan shows progression. Immunotherapy is a new treatment and i know several survivors who stopped treatment after two years with NED scans.  I think progression to bones would result in pain and a metastasis to the brain could show in neurological dysfunction. A metastasis to an organ would not cause pain or symptoms until advanced tumor growth. Therefore, it is important to keep current with scheduled screens.

Glad you are doing well and stay the course.

Tom

[GBJ]

So PET scan done yesterday. Further significant reduction in size and metabolic activity (some down almost 80-90%). Not NED yet but feeling good. No progression anywhere. Two persistent lesions (< 9mm) in the intercoastal space with SUV of 3.5.

They also did a carcinoembryonic antigen (CEA) test. Sometimes they are used as an indirect tumor marker. Value was 0.85 ng/mL which is what they say is usually for healthy persons. So far so good.

Doc has recommended another 6 infusions of Alimta and Keytruda. The fight continues.

[Tom Galli]

GBJ,

And the fight looks to have a positive outcome. Great news on your scan!

Stay the course.

Tom

[Judy M2]

GBJ, glad you've had a good scan! You're heading in a good direction. Your CEA is lower than mine (1.0) and I'm NED. Keep going!