Extensive Stage SCLC - Any Hope?

[ANC123]

My Father was just diagnosed with extensive stage SCLC and has it in his bones. Are there any trials or anything that we can do? At this stage is it just a matter of time? Money isn’t an object, if there was something somewhere that could help us, please let me know. 

[Tom Galli]

ANC,

Welcome here.

No doubt, extensive-stage SCLC with metastasis to the bones is difficult to treat but difficult is not impossible. Small cell is known to quickly mutate around conventional chemotherapy and typically the conventional chemo used is cisplatin and etoposide. To counter this rapid mutation effect, a combination conventional chemo pairing (cisplatin/etoposide or perhaps others) is used in conjunction with immunotherapy (either Tecentriq or Imfinzi). Immunotherapy is a game changer in the treatment of all forms of lung cancer.

Also precision radiation can target your dad's bone metastasis with two objectives: kill the tumors and ease the pain.

If money is no object, then I would steer your dad to a National Cancer Institute Designated Care Center for treatment. Here is a link that will help you find one close to Syracuse. 

Let us know if you have questions. We are here to help.

Stay the course.

Tom

[Pstar]

Hi ANC… I agree with what Tom said. I was diagnosed initially with limited stage Sclc which was treated with chemo and radiation. It then metastasized to my brain which was treated with gamma knife radiosurgery which then classified me as extended stage. I was just treated with SBRT to my right adrenal gland for metastasis there. I am being treated at Roswell Park Cancer Institute as it is close to me( about 50 mins away). With you being in Syracuse, you could go NYC way or Roswell, or you could go out of state if you feel a different hospital would be better. I wish your father and you the best as you navigate your options.

Pam

[ANC123]

On 4/29/2023 at 3:13 PM, Pstar said:

Hi ANC… I agree with what Tom said. I was diagnosed initially with limited stage Sclc which was treated with chemo and radiation. It then metastasized to my brain which was treated with gamma knife radiosurgery which then classified me as extended stage. I was just treated with SBRT to my right adrenal gland for metastasis there. I am being treated at Roswell Park Cancer Institute as it is close to me( about 50 mins away). With you being in Syracuse, you could go NYC way or Roswell, or you could go out of state if you feel a different hospital would be better. I wish your father and you the best as you navigate your options.

Pam

Hey guys, thank you very much for the response. With the new treatments, is prognosis better? The internet only seems to have outdated data and if we pay money into a treatment are we likely to end up with better results vs what Medicare will pay for? 

[Tom Galli]

ANC,

"With new treatments, is [the] prognosis better?" Yes, but I don't have data to back up my answer. I've been moderating this Forum since 2015. I discovered my first online cancer support group in 2006 while in treatment. At that time, most who joined did not have long tenures. Moreover, there seemed to be a lot more "scam cures" advertising and many who joined online in the early days were fleeing from a scam cure entanglement. Lung cancer survival from any form of the disease in the period I was treated (2004 through 2007) was rare. 

Starting around 2007, the FDA accelerated its approval for new therapies. These included new drugs, collectively called Targeted Therapy for certain types of Non Small Cell Adenocarcinoma. Also approved were new precision radiation (SBRT, IMRT, and others) methods for solid lung tumors. I personally benefited from the 2007 approval. My precision radiation called SBRT was the curative treatment for me.

Around 2010, we learned that genetic markers could forecast if Targeted Therapy techniques would work. Early Immunotherapy discoveries earned FDA approval in the 2015 timeframe and genetic marker testing was re-named biomarker testing when PD-L and PD-L1 immunotherapy tissue biopsy testing was approved.

The Immunotherapy discovery was groundbreaking, and this treatment was approved for all forms of lung cancer, including Small Cell Lung Cancer. In I believe 2020, treatment methods for Small Cell dramatically expanded. Radiation oncologists became very aggressive in attacking Small Cell progression with precision radiation. Moreover, advances in radiation technology and techniques resulted in effective treatments for brain metastasis. Small cell typically progresses to the brain.  Medical oncologists started using conventional chemotherapy in combination with Immunotherapy to treat both Limited Stage and Extensive Stage Small Cell. Here is the current approved list of FDA drugs for Small Cell. It is an explosion compared to the once commonplace Cesplaton and Etoposide standard of care.

Now, Small Cell in Limited Stage presentation can be effectively treated and a no evidence of disease (NED) outcome is more than possible. I'd say a NED outcome for Limited Stage disease is likely.  Even Extensive Stage disease outcomes are improving. So is the prognosis better? Yes, dramatically better!

I'm not sure I understand your question on results differences between self-pay and Medicare. In the United States, Medicare will pay for all FDA-approved treatments. For Small Cell Lung Cancer, these include conventional chemotherapy, chemoradiation, combination chemotherapy (conventional chemo with immunotherapy), and precision radiation (SABR, SBRT, IMRT, etcetera.) Moreover, the clinical trial landscape has dramatically changed from the "trial" I encountered in 2004. My 2004 experience was an experiment; today's trials are treatment. Here is more information on clinical trial treatment for lung cancer.

Stay the course.

Tom

[ANC123]

Thank you once again for that phenomenal response and I truly hope I am not overstaying my welcome with further questions. However I do have some if you could help. We just received word today from the oncologist that my Father is “stage 4” and they’ve provided an estimate time frame of 12-24 months. 
 

I have read many things and seen many doctors speak about this and they say that it is almost irresponsible to provide any timeframe and that there aren’t necessarily stages like other forms of cancer. They typically are limited state and extensive stage as you’ve mentioned. 
 

Guessing and formalities aside, does the provided timeframe seem accurate? Based on your anecdotal experience, are we potentially looking at a longer life span? In regards to the drugs that you mentioned that are typically used, would you consider those as an inferior treatment? The treatment they have prescribed today is to start Chemo on Monday potentially with radiation, stsrting Cesplatin and then immunotherapy. Is there a more effective treatment even with unconfirmed results that we can try? 
 

thank you very much. 

[Tom Galli]

ANC,

You are more than welcome in this forum. Indeed, our key purpose is to share information on treatments and outcomes among lung cancer survivors and their caregivers. Answering questions is what we do but be mindful, I am not a physician.

Perhaps your dad's oncologist mistakenly reported his stage. True, small cell lung cancer only has two "stages": Limited and Extensive. But, Stage IV disease is equivalent to Extensive Stage. Thankfully, small cell lung cancer represents only about 15% of total diagnoses and sometimes its unique vocabulary gets overlooked.

Let's unpack survival statistics. These are a bane in our community. The idea of forecasting survival ties back to the FDA requirement that a new treatment modality must show improvement over established therapy to gain approval for use. True, physicians have always "predicted" remaining life, but statements were generalized predictions as in not long to live.

First, consider the span of the "12-24" prediction. The twelve-month span introduces a high degree of uncertainty. Next, listen to this essay by the noted scientist Stephen J. Gould. The predictive statistical outcome is very hard to apply to a single human being. The statistician aims to predict by aggregating hundreds, perhaps thousands, of data points into a single mean or median and thus disclose a central tendency. In fact, the aggregating process discards outliers, data that is outside an "expected value". Your dad could be an outlier; I am an outlier. Your dad could be the one standing far-right on x-axis of the survival graph holding the death curve from an intersection. He could be the one. I wouldn't know how long your dad has. I think the far better question is what is he going to do with the remainder of his life.

You've asked a number of questions about drugs to treat small cell and their effectiveness. I'm not equipped to answer, but I do suggest two courses of action: have your dad start his prescribed treatment and concurrently, take him to a National Cancer Institute Designated Care Center for a second opinion.

Stay the course.

Tom