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?
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!
@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.
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
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.
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 need to be confident in your oncologist and be able to communicate. There is so much to learn and so much to do. This is a time when it is all about you and your needs.
(Stage 4 Adenocarcinoma, papillary) The usual answer I get from my doctors is the "it depends." On so many variables that are still being discovered. I have a FOXA1 and a.familial POT that are not understood in lung cancer. For a while there I felt like an orphan: everybody else has a targeted gene; why not me?
The reality is that yes, we know more...but there's much more in the undiscovered country of our genomes. DNA may make us more vulnerable but you have to take your personal history into account, like your job or your food or where you're living. And...AND...your DNA may be perfect but you are still at risk. So I always return to the "get as healthy as you can for as long as you can." Talk to your nutritionist if your program has one. Cheers & good luck, Wendy
‘Ditto!’ to Wendy’s comment about ‘see a nutritionist’! We are 2 3/4 years in to my husband having lung cancer. We HAD asked the doctor about foods, nutrition, etc… He said it didn’t matter-. Bully! Two weeks ago we set up an appt.w/a nutritionist! She told us things we didn’t know and DID give guidelines that are important! IMO everyone should be told to ‘See a nutritionist!’
You need to be confident in your oncologist and be able to communicate. There is so much to learn and so much to do. This is a time when it is all about you and your needs.
I was just diagnosed and hadn't even started treatment. This was my initial visit. Mind you, I have never been sickly and have enjoyed good health for most of my life. No hypertension, diabetes, heart disease, etc. I was/am active hiking, walking, weights. I just don't get it why he would tell me that right out of the gate, since I didn't ask. I am well aware of my diagnosis, I wanted hope.
My experience was similar. No clue I was at Stage IV. I was very dissatisfied with my initial doctor and made the wise decision to go to Mayo. Do yourself and your loved ones a tremendous favor and get a second opinion.
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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?
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4 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 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 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 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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Helpful -
Hug
2 ReactionsThat 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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Helpful -
Hug
3 ReactionsThank you, Tom. I'm having a bad cancer day today and you have helped more than you know. I don't feel so alone. I'm so glad I stumbled on this site.
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2 Reactions‘Ditto!’ to Wendy’s comment about ‘see a nutritionist’! We are 2 3/4 years in to my husband having lung cancer. We HAD asked the doctor about foods, nutrition, etc… He said it didn’t matter-. Bully! Two weeks ago we set up an appt.w/a nutritionist! She told us things we didn’t know and DID give guidelines that are important! IMO everyone should be told to ‘See a nutritionist!’
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Like -
Helpful -
Hug
1 ReactionYou need to be confident in your oncologist and be able to communicate. There is so much to learn and so much to do. This is a time when it is all about you and your needs.
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Like -
Helpful -
Hug
2 ReactionsMy experience was similar. No clue I was at Stage IV. I was very dissatisfied with my initial doctor and made the wise decision to go to Mayo. Do yourself and your loved ones a tremendous favor and get a second opinion.
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Like -
Helpful -
Hug
2 Reactions