MyWifeSCLC Posted February 27, 2020 Share Posted February 27, 2020 After 3 weeks of research, my take on "standard" treatments for limited-stage SCLC is as follows: (surgery not possible) 1st-line treatment - Concurrent chemoradiation with Cisplatin + Etoposide (CE) + local radiation. Prophylactic Cranial Irradiation ( PCI) is called soon after treatment if complete or partial response is noted. 2d-line treatment - Original chemotherapy (CE) for relapse > 6 months. Topotecan chemotherapy for relapse < 6 months. A possible alternative to Topotecan is CE + Irinotecan chemotherapy but additional toxicities occur; individuals must be in very good health. 3rd-line treatment and beyond - Nivolumab (OPDIVO) or Nivolumab + Ipilimumab (YERVOY) or Pembrolizumab (KEYTRUDA) immunotherapy. Please note that I put quotes around the word standard. There are no standards after 1st-line treatment, only FDA approvals and typical recommendations. My personal opinion of Topotecan is not good based on literature comments about poor response rates. My hope is that my wife has a complete or partial response for greater than 6 months where Topotecan appears to fall by the wayside. For 2nd-line treatment < 6 months, I hope my wife's onc is thinking immunotherapy. Note that all post 1st-line treatments above appear suitable for extensive-stage SCLC. I'm not a doctor and my research may be flawed so please don't take my comments above as gospel. I believe I can now talk somewhat intelligently about "standard" treatments with my wife's onc. I will certainly put the burden on him to explain why or why not. I can always ask for a second and third opinion. 2 other things are fascinating to me - Stereotactic Body Radiation Therapy (SBRT) ... thx Tom ... and Lurbinectedin. However, there appears to be very little discussion on realistic use of SBRT and stage III SCLC (>5cm). It may be a hard sell to my wife's onc and radiation doctors. Lurbinectedin is only in trial stage. If you spot something that is incorrect or you believe the literature says otherwise, please comment. Any thoughts on the various treatments would be welcomed. Steve Link to comment Share on other sites More sharing options...
TJM Posted February 27, 2020 Share Posted February 27, 2020 Steve. You are a rock. You have 100% of my respect and I wish I could buy you a beer. Your wife I am sure is both proud and also confident in your judgement. I am too. Best of luck. See you on the board later. Looking like our journeys will be along the same general path for a little while. Might as well enjoy the company. My name is Tom McGuigan. Loving husband of Stephanie and father of Riley and Trevor. New puppy...who looks like will live even after emergency surgery. Live in Longview Washington. Degreed Chemical Engineer, over 30 years experience in heavy industry and know my shi_. 58 years old. No other major health issues Peace Tom Link to comment Share on other sites More sharing options...
TJM Posted February 27, 2020 Share Posted February 27, 2020 BTW.....I did not mention the results of your research. Spot on. Sure they will be in the future as well. If you willing, please keep a look out for Large cell (LCNEC) as you do your research. Any help I can get is appreciated. Rather rare. Peace Tom Link to comment Share on other sites More sharing options...
Tom Galli Posted February 27, 2020 Share Posted February 27, 2020 Steve, I'm a believer in SBRT. I had multiple courses of Taxol and Carboplatin after my recurrence and my tumors kept returning. Then I had 3 fifteen minute SBRT sessions and was NED and I've been NED for a long time. When one gets to second line and third line treatment, the standard of care recipe is not well defined. You are right to be thinking ahead. I'd press for a consultation with a radiation oncologist about using SBRT in combination with second line chemo. Your likely battle with be with insurance because SBRT is not in the standard of care recipe list. But the right radiation oncologist might be able to get insurance authorization. I was one of the first SBRT patients in the US approved for lung cancer treatment. I had a version called CyberKnife and this required implanting 1 mm diameter gold fiducals (targets) around my tumor. While the FDA approved the treatment, it took some time for the procedure codes to be changed from experimental to therapeutic treatment. Consequently, I paid for my treatment out of pocket but it was well worth it. Stay the course. Tom Link to comment Share on other sites More sharing options...
D iane Posted February 27, 2020 Share Posted February 27, 2020 Hi. Sorry about your wife, good luck with treatments! Hoping for a great response! My husband has extensive stage. I went on to the NCCN guidelines page and asked the oncologist if we could do the latest in 1st line treatment. Small cell had not been updated for almost 20 years!!! He agreed and that's what we're doing. I put his stuff in my signature below. Just my feeling but I don't go too far ahead, I have not researched 2nd or 3rd line treatments other than knowing a greater than 6 month before progression that the initial therapy can be repeated. I have no way of knowing how long my husband will make it and he's in the driver seat to let us know if he wants to stop or keep going. My role is to support and help him through. Not sure he will need a 2nd or 3rd line and they all sound horrible. From what I've read the response from 1st line of treatment is usually good, beyond that, not so much. Thanks for the info. Best wishes to you and your wife!!!! Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted February 27, 2020 Author Share Posted February 27, 2020 Thx Diane ... I have been following yours and another's SCLC posts manually (gotta figure out how to "follow") since you both are a few months ahead of my wife. I do cringe when I "hear" anguish in your'alls voice because I know this is what my wife is or will be going thru. Don't get me wrong ... I want to know what may be coming so I can better help my wife. You know ... my wife is stage IIIB which seems very close to stage IV. It is odd that TECENTRIQ is not mentioned in some capacity for limited stage SCLC. Tom Galli has mentioned SBRT treatment which seems so exciting to me. My thoughts are when (lol ... not if) my wife's primary cancer spot is reduced to < than 5cm, perhaps SBRT and immunotherapy can be used to treat for relapse instead of more chemo. Steve Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted February 28, 2020 Author Share Posted February 28, 2020 Hey TJM ... we are Steve (age 62) and Ginabeth (age 63), living in Dandridge, TN (east TN). We were in home room together in high school but didn't date till a little later in life (happily married 35 yrs). Did a 3 year stint in the Marines then Degrees in Natural Gas (Texas) and Electrical (Tennessee) Engineering and retired from the petroleum pipeline industry at age 60. Also taught high school in between degrees. Teaching didn't pay the bills to my satisfaction. I did a little research on LCNEC ... I thought SCLC was limited in information ... LCNEC has much less info! I'll keep an eye out for you since LCNEC does get mentioned along with SCLC. Steve Link to comment Share on other sites More sharing options...
TJM Posted February 29, 2020 Share Posted February 29, 2020 Thanks Steve. Going to post on the SCLC board because that's is how they treat it..identical to SCLC. I need help with SSDI the most. The disease and treatment will be what they are...but I am one letter..IIIA vs IIIB from automatic approval. That is my last task to finish before I start Chemo Not having much luck with any of the "professionals" on how to improve my odds. Meeting Onc on Tuesday and hopefully can get her to sign a letter. I may be able to work but I can't predict the future. To me it is my responsibility to take care of my wife. My current job (Multiple plant manager) can't be done part time. Thanks for listening and I am 100% rooting for your wife. With you there she has a big leg up on this. BTW.....This port procedure is rather "stingey". Hurts more than I expected. Save a few pain meds if you get it done....I'm sure it will be better tomorrow. Peace Tom Link to comment Share on other sites More sharing options...
MyWifeSCLC Posted February 29, 2020 Author Share Posted February 29, 2020 Forgot to add my wife's dosages that appear to correspond to "standard": Carboplatin - AUC 6 Cisplatin - 75mg/m2 Etoposide - 100mg/m2 IMRT - 200cGY/day x 30 days Steve Link to comment Share on other sites More sharing options...
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