MomSCLC

Thank you Tom, I really appreciate the info. I found out through some research that the traditional serum/blood test for magnesium can sometimes not properly detect low magnesium, so it might be possible that magnesium is actually the culprit. We'll see if the oncologist has any thoughts on that and hopefully get some answers.

Would you mind sharing some more details about your symptoms? I’ve gotten some more details from my dad regarding mom’s test results after asking about magnesium. He says they tested for sodium which was fine, but did not test for magnesium.

I believe there is some data showing possible synergy between radiation and immunotherapy for SCLC. My mom had thoracic radiation + immuno and had a 50% reduction in the primary lung mass and substantial reduction in lymph node. I hope everything goes well for you. Take care.

Unfortunately I think they’ve tested for that already. I don’t know if it’s possible for the tests to be inaccurate, so maybe I’ll ask about getting another one? It’s strange because it seems like these symptoms would be a dead ringer for low magnesium/sodium. Regardless, thank you for your comment. I’ll keep digging. Take care.

My mom has SCLC and has always since had these “spasms.” Bouts of intense pain that occurs in different places and moves around. No doctor has been able to figure out why they’re happening or how to treat them. Negative tests for paraneoplastic syndromes, autoimmune disorders, nutrient deficiencies, etc. She has lesions near her spine, but not actually in/on the spine itself. Neurologist is fairly sure it’s nerve pain of some kind. Opioids help, but not completely effective and she doesn’t like taking them. Gabapentin helps, but not enough. Tried various CBD/THC products that didn’t help either. The only other thing we can think of is acupuncture but that feels like a crapshoot. Someone suggested a rheumatologist but I don’t know how effective that would be since she has no autoimmune disorders. It’s reducing her quality of life by a lot. Her treatment has gone well but these are still a problem (oddly, they almost vanished after first round of chemo then started coming back afterwards?) I’m desperate to find some answers. If you have any information, suggestions, ideas, etc, even if just slightly related, please comment.

My mom was recently diagnosed with SCLC that has likely metastasized to bone. She is healthy otherwise and a never-smoker. Her treatment consists of chemo & radiation and a clinical trial. The clinical trial is for a drug called lurbinectedin (Zepzelca). Does anyone have any experience with this treatment or other clinical trials? Is there any recourse if she gets a placebo instead of the actual drug?