Tracyyy

Hi, we had similar experience. My mother is on a trial – spartalizumab – Taf/Mek since March 2018 for stage 3C unresectable. Since November 2018 her scans showed enlarged chest nodes wich where different on each scan and the oncologist thinks it might be sarcoidosis as she has excellent response on the primary site (inguinal lymph nodes). Now the chest nodes have almost disappeared but her PET scan showed uptake in her spleen and bone marrow associated again with inflamation as her next CT showed nothing there. So it is possible that your situaiton is the same. Good luck and May 2020 be better for all of us!

Hi Happygal, sorry to hear about your update. Hang in there. I was going to suggest the same as Linny – maybe it is worth asking for another opinion and the chemo drug Temodar for brain mets, I have read some success stories of people on it. Good luck!

Hi Zelda, my mother is on a similar drug – spartalizumab in a trial + Dab/Tram and around her 8 treatment she got pneumonitis which cleared up with steroids. When she stopped taking the steroids she got cough, chest pain and shortness of breath and they discovered bilateral enlarged lymph nodes in her chest. Since November they were bigger and smaller on each scan, now they have almost disappeared, they also found granuloma on her lungs. Oncologist thinks it might be side effect from immunotherapy or sarcoidosis. As immunotherapy drugs can cause inflammation to various organs, I think lung problems are pretty common. Good luck and please keep us posted!

Hi Zelda, my mum is also stage 3 on a trial-spartalizumab (immunotherapy similar to Keytruda and Opdivo) and Taf/Mek. Around her 10 infusion she also got enlarged nodes in her chest, which on the next scan were almost completely gone, then on the next scan enlarged again and vary on each scan. They haven’t made a biopsy but her onc thinks it is a side effect from treatment. Good luck and please keep us updated as we are in similar situaiton

Hi Sam! Fingers crossed for good results on your next scan! My mother has similar problem with inflamed lymph nodes. She is stage 3C and on a trial Dab/Tram + spartalizumab for a year now with good results. However, she got enlarged lymph nodes in her chest, which are different on each scan – bigger, than smaller, then bigger again, now they are smaller. Could it be caused by immunotherapy? Initial nodes in her pelvis disappeared and that is why we think it might be inflammation.

Hello Sonja, I am from Bulgaria. I know that immunotherapy might take some time to work, but decreased markers is good news. Scans will show better, are you having one? Keytruda can cause pain in the muscles and joint inflamation. Did your doctor prescribe you something for the pain? Good luck!!

Hi, my mother is on a trial – spartalizumab (new immunotherapy drug) + Taf/Mek for a year. Her scans in November showed more than 10 enlarged lymph nodes in her chest and all the rest clear, so her oncologist suggested it might be inflammation and wanted another scan in 3 months. She had CT in the end of Jan which showed that the nodes reduced in size. She is having PET/CT next week so let's hope they are completely gone and it was due to immunotherapy. Good luck!

Great news, Jenn! So happy for you! I hope my mother will be NED too, but currently we are waiting for another set of scans, as her PET/CT in the end of November showed some enlarged lymph nodes in her chest. She had inoperable pelvic nodes which diasppeared and she had no other mets, that's why her onc thinks they might be reactive nodes as side effect from treatment. I follow your posts and as I remember something similar happenned to you. Hope things will turn out well for us too! Enjoy the holidays! Sending lots of hugs

Hi Steve, my mother had the same issue – last December she had a surgery to remove groin lymph nodes and PET scan after that showed metabolic activity in the same place near the operation. The conclusion in the report was postoperative change, so I think there is nothing to worry about in your case. Good luck!

Hi Mike, hope you find your key!!! Keep us posted, I'll wait for some really good news! Fingers crossed!