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Olivia

I’m new here and looking for positive vibes!

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My dad who is also my best friend has been a single parent since 2001 when we lost my mom to a heart attack. He raised my sister and I (now 26 and 24 respectively) all by himself and did a darn good job. He’d always been a smoker but in November 2019 he finally quit, which had me relieved. I’d always been worried about lung cancer...after losing one parent, I have always worried about something happening to my other parent. Well, in January of this year my dad was diagnosed with Extensive Stage Small Cell Lung Cancer. They started him on chemo right away and after about 3.5 months, he had his first scans. The doctors came in smiling telling him they like what they saw. All the tumors were shrinking/disappearing!! They then added radiation, which provided more good results! Tumors continue to shrink in size “remarkably” the doctors worded it. He’s also doing immunotherapy infusion every 21 days. 
 

We’ve received great news so far, which has kept me feeling positive about him fighting this and being with us for a long time. But I can’t help but think of all the scary statistics I read. The prognosis is definitely grim and reading statistics online really bring me down and make me think the worst. It’s hard to be present and enjoy the time I have with my dad when all I do is worry about bad scan results.

If anyone else here is dealing with ES SCLC and has anything positive to share, I would love to hear it. I see enough of the bad stuff and need some uplifting. Thank you in advance to anyone who has read this whole thing!!

Olivia 

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Hi Olivia,

I'm sorry to hear of your dad's diagnosis but so happy he is responding well to treatment.  All of the statistics that are out for survival are typically five years old and there have been major advancements in lung cancer in the last five years.  Stay positive and hold on to your hope!  

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Olivia,

Small cell is a real challenge. It mutates very quickly to combat chemo. Radiation does kill it however. And now there is new hope with immunotherapy. New immunotherapy drugs have been recently approved for extensive stage small cell as combination chemotherapy drugs: atezolizumab in combination with conventional drugs carboplatin and etoposide as first line therapy. Also new immunotherapy drugs Opdivo and Keytruda have been approved for those who's disease progressed after platinum based first treatments.

I would arrange for a consultation with a radiation oncologist. Some are treating extensive stage disease with forms of stereotactic body radiation therapy or SBRT. They fry the tumors with hopes of eliminating the disease. But this mode of treatment is dependent on a lot of factors: where the tumors are located, how many there are, and insurance coverage. Most insurance won't cover extended stage SBRT because it is not FDA approved and is considered experimental. Some radiation oncologists wave their fees but the National Cancer Institute has and intramural treatment program that offers free care including lodging and transportation.  Read about this here. You might want to fire off an email to the address on the linked blog and inquire if they will perform this treatment if you run into affordability complications.

I wish I could be more positive. Small cell is a rough row to hoe! Extensive stage is rougher. Some make it but almost everyone gets some life extension. The most important thing becomes what to do with the life extension. I had a nearly four year treatment slog and suffered recurrence after recurrence. I had times of no evidence of disease that I could have used to travel or enjoy life but I flittered it away worrying. That was the biggest mistake of my life. If one is choosing treatment, then there will likely be life extension. How long? No one can predict but how is not the question. What to do with the extended life is the relevant question. Read this. I realized after re-watching this very poignant movie that it has a very relevant message for lung cancer survivors.

I do hope your dad's treatment arrests his lung cancer.

Stay the course.

Tom

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