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Anyone get an autoimmune reaction to immunotherapy?
Hi everyone, I'm back with another question.
So my boyfriend started his treatment of chemo/immunotherapy, did the removal of the top portion of his right lung, but started having a tingling in his left hand and arm. Just after the surgery, they thought he was cancer free (in November), but they actually missed a spot on his rib. We did the test to match up the blood work to his tumor they removed, and turns out... they match, which means the cancer is now floating around through the blood. Anyway, due to the tingling and numbness in his left arm, he decided to stop treatment until they find out what has caused him to lose complete use of his arm. We are scheduled to have an MRI of the brain, with and without contrast to see if there may be a tumor in his brain. I was just wondering if anyone else has had the same experience after starting immunotherapy?
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I had an autoimmune reaction to 1st infusion of Keytruda (pembrolizumab) - intolerable joint & muscle pain. Steroid (prednisone), starting at very high dose, over many months got it under control. Never had another infusion. However, the cancer (right lung, lymphs, brain) was NED. 4 years on, still NED. (Had not had any other treatment before Keytruda, but did have radiation of original site after as a "just to be sure" follow-up.) - There are so many varieties of lung cancer and treatments that it's had to compare them. (KRAS g-12d, PD-L1 60%.)
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2 Reactionshi @shellfinder I'm glad your bf's surgery went well. it's good they're doing an MRI of his brain. my dad also had lung cancer in the 80s. when his progressed to his brain he lost the ability of hold up his left arm and also parts of his vision. I hope your bf's care team will advise of the best options once they know what is causing the issues with his arm. what immunotherapy medication was he taking?
@shellfinder, Can you remind me, did they do a PET scan to find the spot on the rib? If that was back in November, has he asked about a follow up PET scan too?
Do you know if there was biomarker testing done, to confirm the molecular makeup of the cancer? Unfortunately, doctors don't always do this on early-stage cancers, but now that we know there is spread to the rib it should be completed.
How are you taking in all this new information, and the new development with the arm? It can't be easy, but he's fortunate to have you by his side and for being his advocate.
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2 Reactions@lls8000
They actually did do the biomarker test at the end of February. We got the results close to the end of March. The tumor in the lung matched the blood markers.
And yes, since I posted the question, they did do the MRI. Turns out he has a tumor on his brain which was inflamed. Thank God that it hadn't ruptured. They admitted him to the hospital, hit him with high doses of steroids and reduced the inflammation and pressure. He can now lift his arm from the shoulder, Not very much, but it's a start. He still doesn't have use of his lower arm, hand or fingers yet.
He will see a radiation doctor on Wednesday and see about treating it with radiation. He also said his vision was somewhat better after the steroid treatment which he continues at home.
As for me, I'm doing good. More questions than answers at the moment.
Also... Incase anyone out there doesn't know this (as we just found out) a PET scan Does Not show cancer in the Brain! The radiation in the infusion lights up the brain which prevents them from seeing the tumors. They have to do a MRI with and without contrast to detect tumors in the brain. This information came from our neurosurgeon!!!
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3 Reactions@mamajite
They did find a tumor on the right side of his brain...
Seeing doctors this week to see best route to take now.
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1 Reaction@shellfinder , While the MRI didn't produce great news, it's good that they have identified the cause of his arm issues. Now it can be treated and addressed. I hope the appointment with oncology goes well, and you both come away with more answers.
Many of us have regularly scheduled brain MRI's. I have one every year, even though up to this point, I haven't had any tumors in the brain. Unfortunately, lung cancer likes to go to the brain. I hope he continues to feel better. Let us know how the appointment goes this week.
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2 Reactions@shellfinder I'm sorry to hear that your bf's cancer has progressed. I hope you're holding up ok. as @lls8000 said, it's helpful to know the cause of the problem so that the most appropriate treatment can be used. how did things go with the radiation oncologist?
@mamajite
He will be fitted with his mask on Monday and have another MRI and CT done. They'll take measurements and get him ready for 3 treatment of radiation, one a day for Wednesday, Thursday and Friday.
Then on Monday, he sees the Oncologist again and they'll decide which immunotherapy drugs to use.
Thanks Everyone for your thoughts and Prayers and Concern.
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3 Reactions@shellfinder - I hope everything goes as well as possible this week. sending you hugs! 🙏🏻