Solid tumor in the top left and small one in the lower left. They ablated (cooked) the large solid tumor before I started the 2 rounds of immunotherapy. They removed the top lobe and did a wedge thing on the lower lobe about 4 weeks after my last immunotherapy. I also had a couple of small tumors in my right lung but they disappeared after the immunotherapy. The only reason the doctor cut out my top lobe was to prove that the "Ablation & Immunotherapy" worked and stage 3a can some day be treated outpatient.
Thank you for that clear distinction!
My Pulmonologist just put immunotherapy on the table as a potential treatment option for me. I was diagnosed two years ago with multifocal adenocarcinoma in lung (stage 1s)- To date I have removed two lung nodules with VAT surgery and done one round of SBRT on another nodule. I go back for PET scan in January, and they may propose ablation at that time. The Pulmonologist also told me because I have so many nodules in lungs, they may consider immunotherapy down the road. Am wondering about immunotherapy side effects during and after treatment. Would like to go on vacation somewhere.
I don't know. I have had two nodules removed so they have the lab results and Mayo did the Solid Tumor panel study.
But I had radiation-induced pneumonitis and my pulmonary function tests declined since then. Saw Pulmonologist in Interstial Lung Disease Clinic at Mayo because I also have pulmonary fibrosis.....and he has indicated that I have a high risk of return pneumonitis with any future cancer treatment including immunotherapy, and this could significantly impact my quality of life. It may be preferable I not do anything more if it remains a slow growing cancer. Having multifocal lugn cancer means there is always another nodule to watch.
I've also been dealing with multifocal LC since 2018. I've had five nodules radiated since then, and was informed by my radiologist during my last treatment (in June) that she wasn't willing to treat me with more. So far I've been fortunate not to have experienced any side effects. I have many more nodules that we're watching right now, and my oncologist is looking at Keytruda to possibly treat them. There's been an ongoing clinical trial at MD Anderson in Houston treating nodules with Keytruda. I was able to speak to the doctor in charge and he told me they're seeing success with the immunotherapy drug. The trial will continue until 2025, so he wasn't able to give me any numbers re: success rates, however. My oncologist continues to be hesitant to start it, he's always telling me how serious the possible side effects could be, but I'm running out of options at this point. I know it's only a matter of time before another lung nodule becomes malignant again.
I've also been dealing with multifocal LC since 2018. I've had five nodules radiated since then, and was informed by my radiologist during my last treatment (in June) that she wasn't willing to treat me with more. So far I've been fortunate not to have experienced any side effects. I have many more nodules that we're watching right now, and my oncologist is looking at Keytruda to possibly treat them. There's been an ongoing clinical trial at MD Anderson in Houston treating nodules with Keytruda. I was able to speak to the doctor in charge and he told me they're seeing success with the immunotherapy drug. The trial will continue until 2025, so he wasn't able to give me any numbers re: success rates, however. My oncologist continues to be hesitant to start it, he's always telling me how serious the possible side effects could be, but I'm running out of options at this point. I know it's only a matter of time before another lung nodule becomes malignant again.
I hear you. I'm about to have proton radiation on the largest of my nodules. It was biopsied and found to be KRASG12F. So no targetable treatment. My RadOnc wants me to have at least one IO treatment before radiation begins.
My lower left and upper right were radiated in 2010 for my mucinous adenocarcinoma. So exposure is a concern to me. Although the RadOnc doing my proton did tell me there is such a thing as radiation forgiveness and that I've put enough time between the breast and lung cancer radiations that I could go with standard sbrt.
We've been watching this GGN turn slowly solid for at least 4 years. There are three more we are watching but I'm hoping the IO (I don't know which one yet) will eliminate the others or we get an abscopal effect going.
I've never heard of the term "radiation forgiveness," and just Googled it and couldn't find a definition... what does it mean? I was diagnosed with LC in 2018, Stage 3b. It was a very large tumor, and I underwent chemo and radiation and was cancer-free for ten years. These nodules started becoming malignant in 2018 after a decade of remission and they haven't stopped... it's nerve-wracking to wait for a new CT and hope there isn't anymore growth to any of the nodules. I have one coming up on October 7 and I'm dreading it. Re: your KRASG12F status, I think my oncologist told me that was the KRAS type I have as well... he's telling me that targeted and immunotherapy drugs can still be effective, however. Hopefully what he's telling me is correct.
Hi,
Yes my husband qualified under an Estrazenica study for 3 years for left lung cancer which had a protein, biomarker for Tagrissso, being EGFR. His 3 years are up next month and will then be taken off Tagrisso. All contrast ct scans over the 3 years has been stable for that lung.
Hi,
Yes my husband qualified under an Estrazenica study for 3 years for left lung cancer which had a protein, biomarker for Tagrissso, being EGFR. His 3 years are up next month and will then be taken off Tagrisso. All contrast ct scans over the 3 years has been stable for that lung.
@troubletwo, I'm curious why your doctor would stop Tagrisso after 3 years. When I went to MD Anderson for a second opinion for my metastatic (to the brain) lung cancer, their oncologist told me two things:
1. No need to come back. Your doctors are doing everything I would have done. Do what they tell you.
2. His plan at the time was Tag for 3 years, followed by 3 more years of 3-month monitoring. If there was no recurrence, he would declare me "cured." (The only time I've ever heard that word.)
Ahh, the heady days of early discovery. A year later, my current oncologist told me he had no plan to stop Tagrisso until "the side effects become unbearable." (For me, those side effects include heart problems, but I'm being monitored by a cardiologist for a leaky valve anyway. Also, financial toxicity because I'm too young for Medicare.) I'll be on it 4 years in December, and I know another lung cancer advocate who has been on it for 9.
I know you haven't asked, but my recommendation is to ask your husband's oncologist why he would stop a successful treatment.
I still get 3-month brain MRIs, and probably will forever, which is how long I plan to live or die trying. 🙂 After 3 1/2 years, my CT scans are being reduced to every 6 months because my chest and abdomen have been clear all this time.
Your husband's doctor considers your husband's age, medical history, overall health, etc., which I don't know. But I am curious about the persistence of this 3-year "rule" for Tagrisso that I thought was over.
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Research continues to indicate that CBD oil (marijuana, THC) interferes with immunotherapy. See this related discussion:
- Cannabis oil and Immunotherapy: Are they compatible?
https://connect.mayoclinic.org/discussion/cannabis-oil-and-immunotherapy/
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1 ReactionWere these tumors multifocal? That is independent primary or metastasis? Or both? Lymph nodes involved?
Do you qualify for the MIRACLE drug, TARGRESSO? You have to have a special mutation…..
I was on it for 1 1/2 years that had to stop because of side effects. Some people do very well on it!
I don't know. I have had two nodules removed so they have the lab results and Mayo did the Solid Tumor panel study.
But I had radiation-induced pneumonitis and my pulmonary function tests declined since then. Saw Pulmonologist in Interstial Lung Disease Clinic at Mayo because I also have pulmonary fibrosis.....and he has indicated that I have a high risk of return pneumonitis with any future cancer treatment including immunotherapy, and this could significantly impact my quality of life. It may be preferable I not do anything more if it remains a slow growing cancer. Having multifocal lugn cancer means there is always another nodule to watch.
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2 ReactionsMy second lung cancer is multifocal. I've decided to radiate the largest one and watch the others.
I've also been dealing with multifocal LC since 2018. I've had five nodules radiated since then, and was informed by my radiologist during my last treatment (in June) that she wasn't willing to treat me with more. So far I've been fortunate not to have experienced any side effects. I have many more nodules that we're watching right now, and my oncologist is looking at Keytruda to possibly treat them. There's been an ongoing clinical trial at MD Anderson in Houston treating nodules with Keytruda. I was able to speak to the doctor in charge and he told me they're seeing success with the immunotherapy drug. The trial will continue until 2025, so he wasn't able to give me any numbers re: success rates, however. My oncologist continues to be hesitant to start it, he's always telling me how serious the possible side effects could be, but I'm running out of options at this point. I know it's only a matter of time before another lung nodule becomes malignant again.
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1 ReactionI hear you. I'm about to have proton radiation on the largest of my nodules. It was biopsied and found to be KRASG12F. So no targetable treatment. My RadOnc wants me to have at least one IO treatment before radiation begins.
My lower left and upper right were radiated in 2010 for my mucinous adenocarcinoma. So exposure is a concern to me. Although the RadOnc doing my proton did tell me there is such a thing as radiation forgiveness and that I've put enough time between the breast and lung cancer radiations that I could go with standard sbrt.
We've been watching this GGN turn slowly solid for at least 4 years. There are three more we are watching but I'm hoping the IO (I don't know which one yet) will eliminate the others or we get an abscopal effect going.
I've never heard of the term "radiation forgiveness," and just Googled it and couldn't find a definition... what does it mean? I was diagnosed with LC in 2018, Stage 3b. It was a very large tumor, and I underwent chemo and radiation and was cancer-free for ten years. These nodules started becoming malignant in 2018 after a decade of remission and they haven't stopped... it's nerve-wracking to wait for a new CT and hope there isn't anymore growth to any of the nodules. I have one coming up on October 7 and I'm dreading it. Re: your KRASG12F status, I think my oncologist told me that was the KRAS type I have as well... he's telling me that targeted and immunotherapy drugs can still be effective, however. Hopefully what he's telling me is correct.
Hi,
Yes my husband qualified under an Estrazenica study for 3 years for left lung cancer which had a protein, biomarker for Tagrissso, being EGFR. His 3 years are up next month and will then be taken off Tagrisso. All contrast ct scans over the 3 years has been stable for that lung.
@troubletwo, I'm curious why your doctor would stop Tagrisso after 3 years. When I went to MD Anderson for a second opinion for my metastatic (to the brain) lung cancer, their oncologist told me two things:
1. No need to come back. Your doctors are doing everything I would have done. Do what they tell you.
2. His plan at the time was Tag for 3 years, followed by 3 more years of 3-month monitoring. If there was no recurrence, he would declare me "cured." (The only time I've ever heard that word.)
Ahh, the heady days of early discovery. A year later, my current oncologist told me he had no plan to stop Tagrisso until "the side effects become unbearable." (For me, those side effects include heart problems, but I'm being monitored by a cardiologist for a leaky valve anyway. Also, financial toxicity because I'm too young for Medicare.) I'll be on it 4 years in December, and I know another lung cancer advocate who has been on it for 9.
I know you haven't asked, but my recommendation is to ask your husband's oncologist why he would stop a successful treatment.
I still get 3-month brain MRIs, and probably will forever, which is how long I plan to live or die trying. 🙂 After 3 1/2 years, my CT scans are being reduced to every 6 months because my chest and abdomen have been clear all this time.
Your husband's doctor considers your husband's age, medical history, overall health, etc., which I don't know. But I am curious about the persistence of this 3-year "rule" for Tagrisso that I thought was over.
I wish you and your husband all the best!
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