Saturn_Bound Posted March 18, 2021 Share Posted March 18, 2021 Not good news from my moms latest PET scan: Progression of disease as evidenced by multiple new FDG avid lymph nodes within the neck and chest, as well as increased in size and activity in previous lymph nodes of the neck and abdomen. Increase in size of FDG avid right lower lobe pulmonary mass and increased activity along the right pleura, diaphragm abutting the right hepatic capsule . New bilateral FDG avid consolidations concerning for metastatic disease versus inflammatory process, recommend clinical correlation and follow-up. I had really high hopes Keytruda would work for at least a year since my mom has a PDL1 of 80%. The pain of seeing this outcome after only 4 months is gut wrenching. I don’t know where to run and just want to dig a hole up in the earth and stay there. She was supposed to get her next infusion on Monday, but I guess we will see what the onc says. No mutations for her Adenocarcinoma so not sure what options are left. Link to comment Share on other sites More sharing options...
TJM Posted March 18, 2021 Share Posted March 18, 2021 So sorry to hear that news. Keep us informed on next steps. FWIW when I asked my oncologist (after clean scan!) what the next step would be if it comes back and he told me again "we will cross that bridge at that time". I pushed him a bit and he did confirm the same Chemo I originally got would be a decent option because it has been close to a year. Dont know if that is an option for your mom or not. I'm guessing he will have a plan. I know the waiting is excruciating. Wishing both of you the best. Peace Tom PS: I think my doc expects new treatments could easily be available if I have a recurrence. Link to comment Share on other sites More sharing options...
LexieCat Posted March 18, 2021 Share Posted March 18, 2021 I'm so sorry, Saturn. This has to be so disappointing for both of you. At this point, I think I'd consider getting a couple of opinions. Is she being treated at a major cancer center? If not, I think I'd want an opinion from an oncologist affiliated with one. There may be other chemo drugs that will hit this thing the right way. Sending a hug. Link to comment Share on other sites More sharing options...
LouT Posted March 18, 2021 Share Posted March 18, 2021 Saturn, As usual, Lexie has given some good advice. Please look into all options. What I've learned about this disease and chemo is that trying something different can often be the "miracle" we are looking for. I sincerely wish you and your Mom the best outcome at this difficult time so please stay strong and hold on. Lou Link to comment Share on other sites More sharing options...
Saturn_Bound Posted March 18, 2021 Author Share Posted March 18, 2021 Thank you everyone, hoping praying for a miracle I need my mom around for at least 20 more years! Lol my mom always says wish for the most when you wish. and @LexieCat—-she is now being treated at UCI in Southern California which is a nationally recognized comprehensive cancer center. We had recently changed hospitals due to her insurance changing, she was at Todd Cancer Center in Long Beach before this. Due to the insurance changing there was actually a 2 week break between treatment while we were getting everything figured out which I don’t know if that affecting the growth of the tumors Link to comment Share on other sites More sharing options...
LexieCat Posted March 18, 2021 Share Posted March 18, 2021 No, a couple weeks' break shouldn't affect anything. The drugs stay in your system longer than the time in between infusions, That's great, then, that she's at a comprehensive cancer center. They should be well connected to other experts. You might ask if there are any clinical trials for which she might be a candidate. Link to comment Share on other sites More sharing options...
Saturn_Bound Posted March 18, 2021 Author Share Posted March 18, 2021 Just got off the phone with the onc and here is the new plan: - new chemo regimen (different from the first round she did) - it will be a combo of 2 chemos: taxotere + cyramza From there, the hope is she can switch back to a new immunotherapy drug (not keytruda) that hopefully she will respond to. She says she prefers to alternate from chemo to immunotherapy rather than from one immunotherapy to another—- I think in her experience it’s more effective that way. She also mentioned that in 3 months there are a few clinical trials that will open up for people with progression after keytruda. Hoping she can jumó on one of those when the time comes. Still emotional, but hanging in there. Staying hopeful as what other option is there. Link to comment Share on other sites More sharing options...
LexieCat Posted March 18, 2021 Share Posted March 18, 2021 Oh, that's wonderful news! I mean, obviously there's still worries, but there's a plan. And as Lou pointed out, there have been several people here with progression on one treatment protocol, and then had it reverse when switched to something else. Honestly, there is just no way to predict for certain who will do well on which treatments. You can go with averages and probabilities, but there's so much unknown still. We'll keep our fingers crossed that this will be the ticket. When does she go for her first infusion? Link to comment Share on other sites More sharing options...
LouT Posted March 18, 2021 Share Posted March 18, 2021 You and your Mom are now added to my prayer list. Let's keep up good vibes for some good results and thank God that there always seems to be a new treatment on the horizon. Lou Link to comment Share on other sites More sharing options...
Tom Galli Posted March 19, 2021 Share Posted March 19, 2021 Saturn, Growth or progression after our "magic bullet" immunotherapy is a kick in the gut. But, it happens and your mom's oncologist's plan is a good one: switch to conventional chemo before returning to immunotherapy. There is one treatment method you might explore: precision radiation using SBRT or a similar method. Precision radiation (more about it here) [click on the right arrow titled: How is radiation therapy administered] is being used more commonly for stage IV patients now and with good success. There are a lot of variables to consider about radiation so I'd arrange a side-bar consultation with a radiation oncologist to see if it is possible for your mom. Stay the course. Tom Link to comment Share on other sites More sharing options...
Saturn_Bound Posted March 19, 2021 Author Share Posted March 19, 2021 Thank you Tom, and everyone, once again. Praying for a miracle outcome here. I will mention the precision radiation to the oncologist as well. Link to comment Share on other sites More sharing options...
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