That is an important lesson I have just learned myself. Find those sites with positivity and not the ones where people moan and groan about their medications and "I can't do this". Surround yourself with positive people and some of it is bound to rub off!!!
That is an important lesson I have just learned myself. Find those sites with positivity and not the ones where people moan and groan about their medications and "I can't do this". Surround yourself with positive people and some of it is bound to rub off!!!
You nailed it! I was on a couple sites briefly and some of the people scared the hell out of me. This one is refreshing. Thank you, you're very reassuring.
You nailed it! I was on a couple sites briefly and some of the people scared the hell out of me. This one is refreshing. Thank you, you're very reassuring.
@rubysue;@ta52- Good morning. I don't think that we have spoken before. My name is Merry and I am the Mentor for the Lung Cancer group on Connect. I have 24 years of experience with lung cancer starting in 1997.
One of the reasons that I am on Connect is because of what Tom just said, find sites that are positive. Giving hope, and good, factual resources lend credibility, not just suppositions. I looked at all sorts of sites before settling on Connect. And I have found that being able to talk to others who share experiences
@rubysue;@ta52- Good morning. I don't think that we have spoken before. My name is Merry and I am the Mentor for the Lung Cancer group on Connect. I have 24 years of experience with lung cancer starting in 1997.
One of the reasons that I am on Connect is because of what Tom just said, find sites that are positive. Giving hope, and good, factual resources lend credibility, not just suppositions. I looked at all sorts of sites before settling on Connect. And I have found that being able to talk to others who share experiences
It sounds odd for a cancer patient but I don't have bad days. I have gotten to a point where I realize my immunotherapy has been textbook and about as successful as can be. I have learned to accept that, appreciate that and help others inside and outside the cancer community understand that the old cancer treatment paradigms are changing for the better. I am still in treatment but I am past just surviving, I am thriving in my new life.
It sounds odd for a cancer patient but I don't have bad days. I have gotten to a point where I realize my immunotherapy has been textbook and about as successful as can be. I have learned to accept that, appreciate that and help others inside and outside the cancer community understand that the old cancer treatment paradigms are changing for the better. I am still in treatment but I am past just surviving, I am thriving in my new life.
Tom- How heartwarming to hear you say this. I felt the same way after my first cancer too. After I recovered from my surgery enough to start doing errands and driving it was like I was let out of the gate in a horse race! I felt such a high, nothing could stop me!
Hi Merry. Thank you for the warm welcome. I apologize for taking so long to respond.
I was diagnosed with stage 3b June 2020. I went through the initial chemo and 6 weeks of radiation at that time. I started Imfinzi after that was complete. I was diagnosed with a brain tumor in January and had gamma knife surgery. Doc told me at that time, none too gently, that I was stage 4 now and it was going to kill me! Moving on, I failed immunotherapy this past June and the CT scan showed my cancer metastasized to my liver, kidney, spine, and adrenal. I went back on chemo with carbo. Mvasi, and pemetrexed for 6 cycles every 3 weeks. I have since dropped the carboplatnin.
Got scan results today and the tumor on my liver has grown from 1.9 to 3.4 cm. Everything else was stable. I'm pretty down tonight.
When I failed the immunotherapy and he put me on this new regime, he again played God and told me even with the chemo I had a 12 percent chance of living for a year.
I live in northern Michigan and my options are limited but am going to look into Cancer Treatment Centers of America for a second opinion.
Sorry this is so lengthy, but you seem so understanding. You have inspired me! You are a miracle and I should be so blessed.
Hey @rubysue, I love Tom's (@ta52) messages to you and wholeheartedly agree that you need to have confidence in your cancer team and oncologist. You need hope. Hope comes in many forms regardless of the stage of disease. Hope for inner peace. Hope to remain pain free. Etc. While you may not be expecting cure, you can find hope.
I also dislike it when people say "I failed treatment." You didn't fail immunotherapy. It failed you. It wasn't an effective treatment for you. But you did not fail! Just a pet peeve of mine. Sorry to vent.
I highly recommend finding out if you have access to palliative care. It is also known as comfort care. They are specialists in managing symptoms (whether from disease or treatments) and can make the cancer experience more comfortable. Have you had a consult with a palliative care specialist?
I am so very grateful for the years I have received. I will be able to greet my 10th(and final) grandchild in January. A birth is always miraculous, but the fact that I should be here to see it is another miracle.
I was first diagnosed with lung cancer 5.5 years ago. A lobectomy of my left upper lobe was preformed and it was deemed that no further tx was necessary. About a year later my scans revealed lesions in all lobes. The oncologist guessed that I had 6 to 9 months, but sent my biopsy for genomic testing. Turns out that I have a ROS1 mutation. I have been on a targeted therapy drug and have been mostly stable since starting it; I did have one wedge removed the summer of 2020.
I go between Dr. Mansfield at the Mayo and a local Allina oncologist.
We may not know how much time we have before the nasty stuff takes us, but we do control how we spend the time we have left.
Love on my friends
I am so very grateful for the years I have received. I will be able to greet my 10th(and final) grandchild in January. A birth is always miraculous, but the fact that I should be here to see it is another miracle.
I was first diagnosed with lung cancer 5.5 years ago. A lobectomy of my left upper lobe was preformed and it was deemed that no further tx was necessary. About a year later my scans revealed lesions in all lobes. The oncologist guessed that I had 6 to 9 months, but sent my biopsy for genomic testing. Turns out that I have a ROS1 mutation. I have been on a targeted therapy drug and have been mostly stable since starting it; I did have one wedge removed the summer of 2020.
I go between Dr. Mansfield at the Mayo and a local Allina oncologist.
We may not know how much time we have before the nasty stuff takes us, but we do control how we spend the time we have left.
Love on my friends
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That is an important lesson I have just learned myself. Find those sites with positivity and not the ones where people moan and groan about their medications and "I can't do this". Surround yourself with positive people and some of it is bound to rub off!!!
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Hug
3 ReactionsYou nailed it! I was on a couple sites briefly and some of the people scared the hell out of me. This one is refreshing. Thank you, you're very reassuring.
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Hug
2 Reactions@rubysue;@ta52- Good morning. I don't think that we have spoken before. My name is Merry and I am the Mentor for the Lung Cancer group on Connect. I have 24 years of experience with lung cancer starting in 1997.
One of the reasons that I am on Connect is because of what Tom just said, find sites that are positive. Giving hope, and good, factual resources lend credibility, not just suppositions. I looked at all sorts of sites before settling on Connect. And I have found that being able to talk to others who share experiences
Tom- Are you having a better day today?
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3 ReactionsIt sounds odd for a cancer patient but I don't have bad days. I have gotten to a point where I realize my immunotherapy has been textbook and about as successful as can be. I have learned to accept that, appreciate that and help others inside and outside the cancer community understand that the old cancer treatment paradigms are changing for the better. I am still in treatment but I am past just surviving, I am thriving in my new life.
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Helpful -
Hug
5 ReactionsTom- How heartwarming to hear you say this. I felt the same way after my first cancer too. After I recovered from my surgery enough to start doing errands and driving it was like I was let out of the gate in a horse race! I felt such a high, nothing could stop me!
These feelings will help your recovery even more!
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3 ReactionsHey @rubysue, I love Tom's (@ta52) messages to you and wholeheartedly agree that you need to have confidence in your cancer team and oncologist. You need hope. Hope comes in many forms regardless of the stage of disease. Hope for inner peace. Hope to remain pain free. Etc. While you may not be expecting cure, you can find hope.
I also dislike it when people say "I failed treatment." You didn't fail immunotherapy. It failed you. It wasn't an effective treatment for you. But you did not fail! Just a pet peeve of mine. Sorry to vent.
I highly recommend finding out if you have access to palliative care. It is also known as comfort care. They are specialists in managing symptoms (whether from disease or treatments) and can make the cancer experience more comfortable. Have you had a consult with a palliative care specialist?
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Helpful -
Hug
4 ReactionsI have been living with stage lV lung cancer for about 4 and a half years. Most days I feel amazing😍
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2 Reactions@cindyjk- Good morning and welcome to Mayo Clinic Connect. Congratulations on your 4 1/2 years of survival! It's a fantastic feeling, right?
What kind of cancer do you have? How did you find it?
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1 ReactionI am so very grateful for the years I have received. I will be able to greet my 10th(and final) grandchild in January. A birth is always miraculous, but the fact that I should be here to see it is another miracle.
I was first diagnosed with lung cancer 5.5 years ago. A lobectomy of my left upper lobe was preformed and it was deemed that no further tx was necessary. About a year later my scans revealed lesions in all lobes. The oncologist guessed that I had 6 to 9 months, but sent my biopsy for genomic testing. Turns out that I have a ROS1 mutation. I have been on a targeted therapy drug and have been mostly stable since starting it; I did have one wedge removed the summer of 2020.
I go between Dr. Mansfield at the Mayo and a local Allina oncologist.
We may not know how much time we have before the nasty stuff takes us, but we do control how we spend the time we have left.
Love on my friends
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Like -
Helpful -
Hug
3 ReactionsWere you told that you have multifocal adenocarcinoma of the lungs?
I love your attitude. I'm sure that your participation in this group will help raise a few spirits, at least!