huj123 Posted April 9, 2021 Author Share Posted April 9, 2021 Thank you @Tom Galli - we met with 2 oncologists and they recommended the same treatment plan so feel pretty good right now. @LexieCatThank you for sharing! Did you ever use targeted radiation for those areas with lesions? Doctors seemed to indicate that it would only be for pain management only and for actually treating the disease. Is it possible to just zap different parts of the body that have the lesions? Also wishing you well with your treatment plan! Quote Link to comment Share on other sites More sharing options...
LexieCat Posted April 9, 2021 Share Posted April 9, 2021 The only metastatic lesion I have is the tiny one (7mm) on my sacrum, and the consensus is that it's responding just fine to the same therapy I had for the main tumor, so no need for radiation. That WOULD have been an option if I needed it, but no point in treating something that's already responding to treatment. I recently had an MRI for hip pain (arthritis) and that showed the lesion to be "almost completely resolved." Depending on the size/location of other mets, precision radiation can be very effective. It's not an option in every case, though. Radiation's great, but it's appropriate only in situations where it is likely to do more good than harm. Quote Link to comment Share on other sites More sharing options...
jenwo Posted May 19, 2021 Share Posted May 19, 2021 huj123, I too have NSCLC Adenocarcinoma with an ERBB2 (HER2) Exon 20 mutation. It is a small subset, so there aren't any targeted drugs approved at this time. I had a second opinion at MDAnderson and he spoke of Trastuzumab Deruxtecan having very positive results in NSCLC HER2+ patients. It is approved in breast and gastric cancers and is seeking approval in NSCLC. The trials available now are only 2nd line, but I would be sure to ask her oncologist about it. I am starting my chemo next week and hopefully will see some relief from the back and hip pain - where my bone mets are - and not too many side effects of the chemo. Keep fighting. Tom Galli and LexieCat 2 Quote Link to comment Share on other sites More sharing options...
huj123 Posted July 1, 2021 Author Share Posted July 1, 2021 Hi All, sorry for the late reply. @jenwo - apologies - just seeing this. Sorry to hear about your diagnosis. How's your chemo treatment? Just an update for all: my mom just finished her 4 first chemo treatments with the triplet cocktail. She just received her first set of scans today and based on the scans, her bone mets seems to be getting worse/continuing to spread to other areas on her spine (she has "worsening sclerotic osseous metastases"). She meets with her doctor next week to discuss, but had a few questions: - Would we have expected chemo to have worked by now? Surprised that it had no effect to be honest. She's been receiving treatment every 3 weeks as a reference. - What should next steps be? If Chemo isn't working, what is next? Do we give it more time or try radiation? Switch to new drugs? She has the HER2+ mutation - is it worth going for the clinical trial? Would appreciate any insights and feedback. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Scott Ante Posted October 18, 2022 Share Posted October 18, 2022 February 9 it will be 5 yrs for my wife . And now all the pains in her numb hands , arms and shoulders and neck which she rates 7+ . We are going back for ct's mri's next week . She said the pain is very bad and her neck is very sensitive and painful . But it spread to her neck ribs spine shoulder. She did beat brain cancer . Just asking for a prayer . That's all thank you all for you all do !!! Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
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