jack14 Posted July 5, 2020 Share Posted July 5, 2020 So pleased to hear that it's working for you Deb and I hope that the side effects pass quickly! As for myself, I am not sure, but I think the Keytruda I have been on (three treatments) may not be working. I was having some hand, arm and shoulder pain. It has been getting worse lately and I mentioned it to the Onc the other day at our last encounter and my third infusion. She examined me and palpated an enlarged lymph node in my shoulder / neck region on the side that has been bothering me. Anyway, this node had been measured at 2 cm prior to the start of the Keytruda. She believes it to be unchanged. I have a CT scheduled at the end of the month after my fourth dose. The Onc says that if we need to, chemo is our next option. She also said that the chemo today was not as hard on patients as it used to be and that I could handle it. In the meantime I have an MRI scheduled for tomorrow of the neck and shoulder to see what might be going on. I have some spinal degeneration and I have a history of a rotator cuff injury. Anyyway, I was wondering if anyone might have any relevant knowledge to share. I am hoping that the Keytruda is working, and that the pain is an orthopedic problem that will improve on its own. Link to comment Share on other sites More sharing options...
Tom Galli Posted July 5, 2020 Share Posted July 5, 2020 Jack, If the problem lymph node turns out to be metastatic, perhaps stereotactic body radiation therapy (SBRT) might fry it. Ask your medical oncologist. Stay the course. Tom Link to comment Share on other sites More sharing options...
jack14 Posted July 6, 2020 Share Posted July 6, 2020 They found a lung nodule that was around 6mm in size, irregular and in the right lung apex during a serial CT scan. It had increased in size from a 4 mm nodule six months earlier. On the opposite side of my chest, several axillary lymph nodes were enlarged. A biopsy of one of those revealed a link to the lung nodule that was classified as the primary site of adenocarcinoma. PET and MRI scans ruled out any metastisizing to the brain, abdomen, or pelvic cavity. A Foundation One Panel of Genes was done and some other tests. A PDL-1 of 20 percent got me on Keytruda. Thanks I will mention that to her after we meet to discuss the MRI results. Link to comment Share on other sites More sharing options...
jack14 Posted July 6, 2020 Share Posted July 6, 2020 Well, I had the MRI (neck and shoulder) today. Sigh...and will await the results. After doing some research in regards to my symptoms, and knowing that several axial and sub clavicular lymph nodes are enlarged, I am betting that it may be a lymph node pressing on the nerve in the plexus. Unless the node is shrunk, it may need to be excised? I wonder if anyone in here has experienced this? I read that the feelings I am getting down my arm and in my thumb and index finger are referred to as "stings" and "burns". Those terms sure are descriptive of what I am getting in that hand.... Link to comment Share on other sites More sharing options...
BridgetO Posted July 7, 2020 Share Posted July 7, 2020 As Tom Petty sang "the waiting is the hardest part". Best wishes and keep us posted. Bridget O Link to comment Share on other sites More sharing options...
jack14 Posted July 8, 2020 Share Posted July 8, 2020 True Link to comment Share on other sites More sharing options...
jack14 Posted July 9, 2020 Share Posted July 9, 2020 I received a call from my Oncologists nurse who said that the MRI revealed an enlarged lymph node pressing on the plexus nerve bundle and that would explain the pain I am feeling. The C spine was unremarkable and my shoulder shows mild degenerative changes. She went on to say that the Dr said that if the Keytruda fails to reduce the node, they could look into radiological intervention or chemo. I am up for my fourth infusion next week and she will discuss it further with me then. praying here Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 9, 2020 Share Posted July 9, 2020 Keep on keeping on Jack. It takes a little while for immuno to kick into gear. Will keep praying! Link to comment Share on other sites More sharing options...
jack14 Posted July 9, 2020 Share Posted July 9, 2020 Thanks RM I was watching a movie last night and suddenly the pain in my arm stopped! The chronic nagging soreness just vanished! My thumb and index finger is less numb and burning. There is some tingling and a bit of numbness still but it is less.I am praying that the node has gone down. Link to comment Share on other sites More sharing options...
Deb W Posted July 9, 2020 Author Share Posted July 9, 2020 Hi Jack, I've been told that immunotherapy can take a while to show shrinkage. Hang in there! Link to comment Share on other sites More sharing options...
GaryG Posted July 10, 2020 Share Posted July 10, 2020 Deb: I am Late but congratulations and continued success. I hope to see the day where you are NED soon. I start on the triplet next Thursday and you give me hope. Gary Link to comment Share on other sites More sharing options...
Deb W Posted July 12, 2020 Author Share Posted July 12, 2020 Thanks so much. I've heard that some people don't get side effects at all (maybe you'll be one of them). My rough days with nausea and fatigue are days 4 and 5 and just knowing that it's temporary helps a lot. I created a side effect journal, and I've now been through 3 treatments and it's the same each time. Good luck and I hope the triplet works for you. Today is day 11 and I have my usual energy and feel like I've never been sick. Keep us posted on how it goes for you. Deb Link to comment Share on other sites More sharing options...
jack14 Posted July 14, 2020 Share Posted July 14, 2020 Well, I had my fourth Keytruda infusion yesterday. The PA reviewed the MRI results with me and I informed her that the pain in my arm had reduced. The neck and shoulder MRI was pretty much unremarkable except for an enlarged supraclavicular lymph node that is directly in contact with the brachial plexus nerve bundle. This node was detected a couple months ago during a CT scan. It is palpable and she said to her it feels like it is split down the center. My Onc estimated it at 2cm three weeks ago. The PA said it feels like 2cm long by 1 cm wide to her and divided in half...I asked her if that is a sign that it might be breaking up, and she said absolutely. Fingers crossed and prayers. So, now I have a CT scan scheduled to see if anything is changed at the end of the month. The nurse called me a few minutes ago and said that the Oncolologist wanted me to know that the labs just came in regarding my cancer marker? Said that they had come down from 76 to 59? Said that was a sign that the therapy might be working. I don't remember hearing much about that test though. Anyone know anything about that? Link to comment Share on other sites More sharing options...
LouT Posted July 15, 2020 Share Posted July 15, 2020 Jack, Did they mention the name of the test? Could have been CEA (Carcinoembryonic Antigen)? That is the only test I've ever had for a general cancer indicator and, if that is what it was, then yes a lower number would be better and indicative that you are responding to treatment. Lou Link to comment Share on other sites More sharing options...
jack14 Posted July 19, 2020 Share Posted July 19, 2020 hi Lou It is called a CA-19-9 antigen test. Link to comment Share on other sites More sharing options...
LouT Posted July 19, 2020 Share Posted July 19, 2020 7 hours ago, jack14 said: hi Lou It is called a CA-19-9 antigen test. I looked it up and while I read that it’s often used for Pancreatic cancer detection it seems similar, in practice, to the CEA test in that it detects a protein produced in the presence of cancer. You can read a bit more about it here https://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/tests-and-procedures/carbohydrate-antigen-19-9-ca-19-9/?region=on I’m glad your results are looking good Lou Link to comment Share on other sites More sharing options...
jack14 Posted July 19, 2020 Share Posted July 19, 2020 Thanks Lou Link to comment Share on other sites More sharing options...
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