TrishaK Posted February 1, 2019 Share Posted February 1, 2019 Hi. My mom was recently diagnosed with SCLC. This is on top of already having a gastrointestinal stromal tumor (GIST) involving her stomach, pancreas, and spleen. GIST is a slow growing tumor that we have been able to keep at bay so far with Gleevec and that can hopefully be surgically removed in the future. The SCLC was discovered during one of her CT scans for GIST. Since SCLC is so aggressive that has obviously taken precedence. Her single lung nodule measures 2.4 cm. They just did an MRI to see if there is metastasis to the brain and found a single mass measuring 2.5x2.3x2.4 cm. They are recommending her for gamma knife procedure to hopefully eliminate the brain mass. If that is successful she may even be a candidate for surgical removal of the primary lung nodule. I’m trying to be hopeful but this is all very devastating. I mean two cancers at one time with one that is metastic? Anyway, I was hoping there are people in here that have undergone Gamma Knife and can tell me how it worked for them? Maybe a little of what to expect? Any feedback/support is much appreciated. - Trish Link to comment Share on other sites More sharing options...
BridgetO Posted February 1, 2019 Share Posted February 1, 2019 Hi Trisha and welcome. Your mom is going through a lot! i think there are some people on these forums wha have had gamma knife. I hope you'll hear from them. Hang in there. is a tough one , just by itself. There is a treatment involving Tecentriq (atezolizumab) that's just started being used for Small Cell, you may have already read about it here. Let us know how we can support you. Link to comment Share on other sites More sharing options...
JoshK Posted February 1, 2019 Share Posted February 1, 2019 Hi Trisha, I am truly so sorry for your predicament, and my heart goes out to you. Other than the GIST - a HUGE "other than" - the starting point of my Mom's SCLC journey is uncannily similar to yours. She had pretty much exactly the same sized tumors in exactly the same spots. Her brain tumor was able to be surgically removed, and then it was zapped with gamma knife just as a precaution. Brain surgery is traumatic, but it was necessary because she was having seizures, and she was 90% recovered within a week. The gamma knife was literally nothing. She was in a chair for an hour and walked out with no side effects. As for the primary tumor, like the brain tumor it was pretty small and peripheral. However, he doctors said no point in doing surgery since it already metastasized, which is what I read as well. She had chemo - also no side effects from that either other than hair loss. The chemo took care of the tumor in 2 cycles, but they did 6 anyway since it really didn't bother her. After the chemo, she had "consolidation radiation" to the lungs, the intention of which is to "clean up" any residual microscopic disease. That is not the standard of care, but some studies showed encouraging results, and the more forward-leaning doctors often recommend it to strong patients. That also didn't bother my mom at all. Almost 7 months post-treatment, and she remains blessedly cancer-free. I know recurrence is likely, but I'm thankful for the good times we've had and feel encouraged that because she tolerated the treatments so easily, if/when it comes back should not be so bad as it often is. Anyway, hope that helps. I wish you and your family the very best. Link to comment Share on other sites More sharing options...
TrishaK Posted February 2, 2019 Author Share Posted February 2, 2019 Thank you Josh for your response! It’s helpful to hear positive results. My understanding was that gamma knife could eradicate the brain met without invasive surgery. I’m hoping that’s a possibility in my mom’s case. So far the only symptom she has had is headaches. One thing I am learning is that you have to come to terms that nothing is certain. I hope you mom has continued success! Link to comment Share on other sites More sharing options...
JoshK Posted February 2, 2019 Share Posted February 2, 2019 Thank you Trisha. Depending where the tumor is and how large it is, options - surgical and gamma knife - may be limited. I'm not a doctor, but I think from what I've read and been told is that a pure gamma knife approach works best when you're dealing with tiny lesions. Surgery followed by gamma knife for a tumor that size - not large but also not a tiny little lesion ether - I believe would be more likely to get the job done if it's even possible. However, please listen to your doctor and get a second opinion. Link to comment Share on other sites More sharing options...
TrishaK Posted February 18, 2019 Author Share Posted February 18, 2019 Welp my mom is currently undergoing the gamma knife treatment here at MUSC. The treatment will last 110 minutes. Can only hope it does what it is supposed to. Next stop, chemo. Link to comment Share on other sites More sharing options...
LaurenH Posted February 20, 2019 Share Posted February 20, 2019 Hi, TrishaK, We've been thinking about you and your mom. How did it go on Monday? Please post an update when you can! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
TrishaK Posted February 21, 2019 Author Share Posted February 21, 2019 Thanks Lauren for asking! The procedure went very well. They didn’t find any new tumors or any surprises. They feel they were able to target the tumor from all angles to effectively kill the cancer cells. Next we will find out chemo schedule on Friday. Scared about what side effects we may run into with chemo. Also concerned about my mom’s spirits when she starts losing her hair. I need to figure out how to get her a wig. Link to comment Share on other sites More sharing options...
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