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! 

[GBJ]

Hi All, it been a while since I posted on this site. I guessed I could wade through the treatment and reach NED by the time I posted.  Dx with Stage IV A adenocarcinoma Lung in Feb 2022, have completed 6 cycles of carboplatin, 22 of Alimta and 21 of Keytruda by July 23. Have been on maintenance therapy - carboplatin dropped - since July 2022. First 3 scans taken until April 2023 showed significant regression in nodes and lesions, almost 90% gone.

However, recent PET scan showed increase in size and SUV by a few mm, same location. No new location found as per the oncologist. Since I have been on immunotherapy, the oncologist is thinking it is more likely a pseudo-progression caused by the immune cells generating a response rather than growth. He has asked for continued treatment with Alimta and Keytruda for the next 3 cycles, with a follow up scan. He said, since I do not have any other symptoms and all my blood markers are normal, it should be okay.

It is a risk, but he seems confidant. However I am not sure. Do not know how to take this recent setback. Fingers crossed and fight continues.

GBJ

[Tom Galli]

GBJ,

I'm not a physician but pseudo-progression and immunotherapy seem to be a common condition. Many who have a PET scan after immunotherapy report slight increases in tumor size and minimal SUVs (SUV=standard uptake value; say <5). 

Let's hope it is pseudo-progression and it is gone in the next scan.

Stay the course.

Tom

[GBJ]

Thanks Tom. 

However in my case the growth in couple of locations is greater than 5 mm and SUV is also high. 

But CEA marker was within normal range. Hard to understand. 

My oncologist is very proactive, and orders scans and blood tests quite often. Last CT scan in March was stable. CEA marker test in April was normal. But this report is concerning. 

Trying to stay positive. 

[GBJ]

Hi All, it been a while since I posted on this site. Dx with Stage IV A adenocarcinoma Lung in Feb 2022, have completed 6 cycles of carboplatin, 25 of Alimta and 24 of Keytruda by September 23. Have been on maintenance therapy - carboplatin dropped - since July 2022. First 3 scans taken until April 2023 showed significant regression in nodes and lesions, almost 90% gone.

PET scan taken in July showed increase in size and SUV by a few mm, same location. No new location found as per the oncologist. Since I have been on immunotherapy, the oncologist was thinking it is more likely a pseudo-progression caused by the immune cells generating a response rather than growth. He has asked for continued treatment with Alimta and Keytruda for the next 3 cycles, with a follow up scan. He said, since I do not have any other symptoms and all my blood markers are normal, it should be okay.

Another PET scan taken this week. Results are back with further increase in size and metabolic activity. Also new lesion detected in D2 spinous process. Awaiting doctor's appointment.

The size of tumor increase is only 1-2 mm in some places, and some nodes have either regressed or are persistent. Physically as active as ever with no major heath concerns. The progression is localized and has not spread to any other organ. Unable to understand what is going on.

I am not sure if the doctor will start second line therapy.

Any ideas what I need to expect from here on. Just wanted to get a feeling of my options.

GBJ

[Tom Galli]

GBJ,

In the US, medical oncologists are getting aggressive using precision radiation (SBRT, IMRT, IGRT, SABR) to treat with curative intent multifocal disease. I'd consult with a radiation oncologist to see if "spot welding" your mets is possible.

Stay the course.

Tom

[Karen_L]

7 hours ago, GBJ said:

The size of tumor increase is only 1-2 mm in some places, and some nodes have either regressed or are persistent. Physically as active as ever with no major heath concerns. The progression is localized and has not spread to any other organ. Unable to understand what is going on.

 

Unfortunately, I suspect lung cancer is just doing what lung cancer does. At webinars, I've heard doctors discuss their research; some have a "cancer seed" theory, that lung cancer appears to be gone but seed cells remain and are sparked into action. Their research focuses on identifying and interrupting the triggering processes. 

Just curious-- have you had biomarker testing? Sometimes knowing about mutations of your specific cancer can help you understand your doctor's thinking. In many countries, there are treatment protocols in place for different iterations of the disease.  Having some knowledge of these can help you open discussion with your doctor about steps moving forward. Here's an example of guidelines for NSCLC in the U.S. In a recent webinar, one researcher said that while U.S. doctors aren't bound to these protocols, insurance may not pay for novel approaches. I believe European nations have such guidelines; I don't know if guidance like this exists where you are.

In the U.S., we speak about seeking a second opinion from a different lung cancer specialist. Perhaps that is possible in your country? In instances of recurrence, we also speak about re-checking biomarkers to see if your disease has developed new mutations. There are liquid biopsies that can 

For me, it's important to remember that lung cancer is persistent and effective at working around our interventions. This is why research is so critical to forwarding treatment. 

I hope something in my response offers a way for you to better understand your situation. 

Karen

[GBJ]

Thanks Tom and Karen.

Meeting with the oncologist today. Will know more what he has to say. Will surely ask for molecular testing (rare in India) and about radiation therapy (SBRT is rare in India)

The results are a huge setback. Trying to be positive in all of this.

GBJ

[Karen_L]

@GBJ You know, IMO, this "be positive" cancer thing is sometimes more pressure than we need. Just sayin'.

This may seem to be heresy, but it's beyond me how a human can feel positive about something as scary.

We all make peace with our situations in different ways. But I am never positive about lung cancer. I think it's stupid and unfair.  When there's a change in my disease, I'm numb. After a little while, I feel a reprise of the emotions I had with my initial diagnosis: I feel angry and frightened and full of grief.

Eventually, I choose to say, "OK, that's how I feel. I see that, and now I'm going to re-examine my day-to-day and see what I might need to do to make a meaningful life within the new parameters." Sometimes things happen quickly enough that I have to juggle feelings and actions at the same time. That's when I go to my primary defense: dark humor in the face of the absolute absurdity of the situation. But all that other stuff is stewing in the background. It's exhausting. 

Just take care of yourself in whatever way you need to. Each day, find one thing, anything, that brings you peace or pleasure, or even a laugh. Take a deep breath, take a couple, when you feel afraid. Unless it's helpful to you right now, you don't have to be positive. You just need to cope. 

We're here. Keep us posted. 

Karen

[JuneK]

Such wise words Karen - I agree with you completely! I sometimes find myself slightly annoyed when a well-meaning friend tells me I have to remain positive. My first thought is always, "well, that's easy for YOU to say". It's just one more thing to feel bad about - am I a failure because I struggle to remain as positive as I should while fighting this disease?

GBJ - I experienced a recurrence this summer so I know how devastating it can be. Especially when things had been going so well for a while. I hope that's not what is happening with you, but if it is, I will pray they find the best treatment options for you going forward.

[GBJ]

@Karen_LThanks for the very kind words.

@JuneKThanks. We are probably in the same boat now with the progression. Happy to hear that you found a targeted gene for which there are treatment options. Good luck, my prayers are with you.

So an update after meeting my onc-doc. He said the progression was real, but local. No more psuedo-progression. But Alimta and Keytruda are no more working. So I have been switched to Paclitaxel/Carboplatin/Becavizumab regimen for the next 6 cycles, with scans after every 3 cycles. Platimum treatment worked for me in the first round before it was removed during maintenance therapy, so the doctor feels it will help contain/minimize the growth this time as well. If this works, then they will stop Paclitaxel/Carboplatin after 6 cycles and continue with Becavizumab from then on. If not, Docetaxel would be the way forward.

The doctor also suggested molecular testing, but was not persistent on it. He does not think there will any ALK/ROS/EGFR mutation now. He thinks because immunotherapy worked for me for almost 20 months, it is highly likely ALK/ROS/EGFR mutations are present.

Since molecular testing is not covered under insurance here, and more so, technicians/pathologists are not well trained in performing the test or reading the results, there have been lot of cases of false positives/negatives. Have a friend who is a molecular oncology geneticist who does this for a living, specifically for lung cancer. He himself says that he would not trust the results from these molecular testing studies most of the time, as he has seen a lot of such false positives/negatives. Will give it a try anyways.

Anyone here have an idea on the side-effects of Paclitaxel/Becavizumab. The doctor told me issues of high BP/palpitation and neuropathy (tingling of hands and legs etc.), but other than that, what can one expect.

Any information will be helpful. Thanks.

GBJ

 

[Karen_L]

I was on Paclitaxel & Cisplatin. I had some nausea, easily managed with Zofran & Compezine. 

K