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My dad has Extensive SCLC


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Hi all, 

I recently joined this forum and really looking to just talk to people who experienced the same or maybe even just to write my story. 

So, as the title reads, my 68 year old dad has extensive Small Cell Lung Cancer. He was diagnosed in August, so we are 2 months further now.

My dad has COPD and on his 68th birthday he wasn't feeling well because it was very hot and he had some pain in his mouth. After using his pump he did feel better though, but he kept having blisters in his mouth. So for that he went to the doctor and the doctor referred him to the dentist. For some reason the doctor felt the need to make a x-ray of his lungs, so that's what they did in the hospital.

In the hospital they noticed his lymph nodes behind his diaphragm were swollen, so this was a reason to have a PET-scan. Because of the PET-scan, they first gave the diagnosis lymph node cancer with metastasis to the spleen. Next step was taking a biopsy to check what type of cancer it was. 

Well, when we got the diagnosis it was the heaviest doctor's appointment I could ever imagine having. My dad has Extensive Small Cell Lung Cancer with metastasis to his spleen, lymph nodes, brain and abdominal wall. Prognosis: months... 

Next step, treatment... focused on palliative care. 

Now 2 month further my dad is doing well despite the circumstances. He is now on his third round of chemo Etoposide and Cisplatin. He will get 4 rounds of 3 days in total. But he has no side effects actually. Maybe a bit tired, and hair loss, but he is still eating and drinking well, and booking vacations and doing social activities. I hope he will stay good for a long time... 

After his 2nd round of Chemo he got a CT-Scan and it seems the tumor in his lung has shrunk a bit. After the 4th chemo they will do a full research with MRI as well to see what the chemo did in his whole body. 

I really live in hope that he will stay for another couple of years, but my sister who works at the Intensive Care is not that hopeful. She is more realistic and thinks he won't make it to 2 years of survival.

We all have a hard time struggle with this, and we don't know what's coming when these 4 rounds of chemo are done. Will there be next steps? 2nd line treatment? I know that in Europe Immunotherapy isn't a thing that's really given with SCLC, and the outcomes of that are not really positive yet. And travelling to a different country with him will probably take a toll on him a lot. I guess we just have to be grateful for each day we have left with him, and try to make as much memories as we can. 

Event though there is hope he may be here for another couple of years, I also know somewhere that the chances are low... especially him being 68 and having COPD. 

Thanks anyway for reading my story.

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Welcome here and I'm very sorry to learn about your dad's small cell lung cancer. Small cell is difficult to arrest and an extensive stage presentation is indeed a challenge to arrest. Your dad is receiving the standard of care treatment with Etopside and Cisplatin. In the US,  combination chemo adding immunotherapy is becoming a more common treatment. Here is information about small cell and immunotherapy. Perhaps you could ask your father's treatment team if an immunotherapy trial is available in the Netherlands.

Stay the course.


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