1. < Lung Cancer

Immunotherapy

Posted by campinggirl100 @campinggirl100, Mar 6, 2023

Hi. I am getting conflicting information on if immunotherapy causes your masses/tumors to swell and look like growth on mri and ct scan. My husband is on Tecentriq. This is his last hope of treatment, at least where my husband goes for treatment. He has g12d kras mutation which we are told has no known treatments that work. Also, does Tecentriq cross blood brain barrier?

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campinggirl100 | @campinggirl100 | Mar 6, 2023

Hi. I am getting conflicting information on if immunotherapy causes your masses/tumors to swell and look like growth on mri and ct scan. Also, if Tecentriq crosses brain blood barrier. This is my husband's last hope according to where we go. He has g12d kras mutation, which we are told has no known treatment.

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1 reply
campinggirl100 | @campinggirl100 | Mar 6, 2023
In reply to @campinggirl100 "Hi. I am getting conflicting information on if immunotherapy causes your masses/tumors to swell and look..." + (show)
@campinggirl100

Hi. I am getting conflicting information on if immunotherapy causes your masses/tumors to swell and look like growth on mri and ct scan. Also, if Tecentriq crosses brain blood barrier. This is my husband's last hope according to where we go. He has g12d kras mutation, which we are told has no known treatment.

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I meant immunotherapy causes masses/tumors to swell.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 7, 2023

Welcome @campinggirl100, I notice that you posted your message to post the Lung Cancer group and the Brain Tumor group. Does your husband have non-small cell lung cancer that has metastasized to the brain?

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campinggirl100 | @campinggirl100 | Mar 7, 2023

Yes. We are told no known treatments that work. He has g12d kras mutation. We are on our last hope, according to the cancer center we go to. He is on Tecentriq. His platelets were up that particular day (God!), and he was due to have treatment too. Do tumors swell on immunotherapy? And does it break brain blood barrier? We were told hospice before platelets went up. To me, there has to be more to try if pet scan after third treatment isn't working. They gave up on us until platelets went up. I don't wantvto lose my husband in six months

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2 replies
dianemb | @dianemb | Mar 8, 2023
In reply to @campinggirl100 "Yes. We are told no known treatments that work. He has g12d kras mutation. We are..." + (show)
@campinggirl100

Yes. We are told no known treatments that work. He has g12d kras mutation. We are on our last hope, according to the cancer center we go to. He is on Tecentriq. His platelets were up that particular day (God!), and he was due to have treatment too. Do tumors swell on immunotherapy? And does it break brain blood barrier? We were told hospice before platelets went up. To me, there has to be more to try if pet scan after third treatment isn't working. They gave up on us until platelets went up. I don't wantvto lose my husband in six months

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Your words brought tears to my eyes. I am a wife with nsc lung cancer and I don’t want my husband to be a widower. It’s so difficult, isn’t it? We are very kind to each other, no time for petty disagreements.

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1 reply
campinggirl100 | @campinggirl100 | Mar 8, 2023
In reply to @dianemb "Your words brought tears to my eyes. I am a wife with nsc lung cancer and..." + (show)
@dianemb

Your words brought tears to my eyes. I am a wife with nsc lung cancer and I don’t want my husband to be a widower. It’s so difficult, isn’t it? We are very kind to each other, no time for petty disagreements.

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What treatments have they tried?

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1 reply
dianemb | @dianemb | Mar 8, 2023
In reply to @campinggirl100 "What treatments have they tried?" + (show)
@campinggirl100

What treatments have they tried?

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They said surgery, radiation were out. So far I have been in a clinical trial, one testing drug and keytruda. After four infusions , clinical drug showed no benefit, so now am continuing with keytruda and two standard chemotherapy drugs. Only one infusion so far. I feel like a science experiment but feel fortunate to be in Mayo’s care. I certainly trust them.

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Mentor
Lisa, Volunteer Mentor | @lls8000 | Mar 9, 2023
In reply to @campinggirl100 "Yes. We are told no known treatments that work. He has g12d kras mutation. We are..." + (show)
@campinggirl100

Yes. We are told no known treatments that work. He has g12d kras mutation. We are on our last hope, according to the cancer center we go to. He is on Tecentriq. His platelets were up that particular day (God!), and he was due to have treatment too. Do tumors swell on immunotherapy? And does it break brain blood barrier? We were told hospice before platelets went up. To me, there has to be more to try if pet scan after third treatment isn't working. They gave up on us until platelets went up. I don't wantvto lose my husband in six months

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This is so difficult. More research is needed to help save our lives, but some of us don’t have time to wait for the treatments that we so desperately need.
As an ALK Positive patient, I know that the current treatments are limited. My greatest fear is leaving my husband behind alone. My heart breaks for you both. Are there any KRAS experts in your area?
Hugs, Lisa

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1 reply
campinggirl100 | @campinggirl100 | Mar 9, 2023
In reply to @lls8000 "This is so difficult. More research is needed to help save our lives, but some of..." + (show)
@lls8000

This is so difficult. More research is needed to help save our lives, but some of us don’t have time to wait for the treatments that we so desperately need.
As an ALK Positive patient, I know that the current treatments are limited. My greatest fear is leaving my husband behind alone. My heart breaks for you both. Are there any KRAS experts in your area?
Hugs, Lisa

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No Kras experts that I am aware of. I reached out to our hospital inquiring about laser/cyberknife/gammaknife treatment.

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