Anyone out there living with stage 4 lung cancer?

Posted by nursed2075 @nursed2075, Mar 10, 2020

Is anyone living with stg4 lung cancer? How are they doing?

Interested in more discussions like this? Go to the Lung Cancer Support Group.

@janlanderz

My oncologist says I will be continuing with the Nivolumab (Opdivo) every 4 weeks .. next infusion is tomorrow and he will decide with the end of May CAT scan what the next step will be.. he thinks may have to have radiation or what he termed as Bad Chemo if the new growing tumor should not behave I guess… .. not sure what he meant by Bad Chemo… eeeccckkk… I have only seen this oncologist twice.. Monday was my second time seeing him.. I am not sure what I think of this oncologist yet… really liked him my first appointment.. seemed real optimistic.. and did not show me the same optimism Monday… I had a list of questions for him that I had typed out…and I think he did not take likely to them.. he made me a whole new appointment with him on March 26th to answer the questions.. one of the questions was asking about my cancer which is PDL-1 less than 1 %… wanted to understand it more… he says I am looking too far into my cancer that the question I am asking is something only a scientist or researcher needs to know… attaching the questions just so you can see the type of questions I asked.. some he answered… like the wine question… lol. but the more complicated ones.. he did not answer…

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@janlanderz– Actually that's fine that he set up a separate appointment to answer your questions. He might have been very busy the day you saw him. I have had lung cancer for 22+ years with 2 types of cancer. I am stage 4 with no metastasis. I have asked every darn question know to mankind (lol) and have found a lot of them can't be answered. Have you googled your question? Can I ask what your question is so that I can help you understand more?

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The other questions I had are basic… like can i go to dentist, etc… think these are the questions that bothered him….

12. Since there was a change in my cancer, does this mean I am no longer pdl-1 less than 1 % and what exactly does pdl-1 less than 1 % mean as opposed to higher numbers and or mutations?

13. https://news.yahoo.com/moves-medicine-never-smokers-develop-200303715.html
Is stating that they find that especially in non-smokers that estrogen level may have a factor in these women getting lung cancer. I went through the change of life for 14 years.. think that could of contributed to my cancer even though I had been a smoker? Do we know what caused my cancer? Can you tell whether it was caused by asbestos or smoking, etc..?

15. As far as I know my first oncologist sent my tissue Biopsy to Princess Margaret Hospital to see if I would qualify for immunotherapy before starting me on chemo in hopes I would qualify… not sure why I did not qualify then, but do now… however, was the Test Bio Marker testing?
• And was I tested for the different types of cancers below?
• And is this how they know I am PDL-1 less than 1%?

'THIS WAS A GENERAL STATEMENT I COPY AND PASTED FROM SOMEWHERE, JUST WANTED TO KNOW IF I WAS TESTED FOR ALL THESE DIFFERENT TYPES OF CAANCER)
(Molecular diagnostics result from Princess Margaret showed that they tested for AKT1, BRAF, (/EGFR, ERBB2, KRAS, PIK3CA, RET and TP53 through Next Generation Sequencing, and ALK, ROS1 through immunohistochemistry, and PD-L1 as well. All samples were taken through fine needle aspiration.

16. I have been having which seems like muscle pain in my upper arms in the front… should we be checking my CK(Creatine Kinase) levels.. Seen this on a support website of someone else who was going through immunotherapy..see their statement below:
Jill Nolan Morris I had a severe reaction to Keytruda. I ended up with rhabdomyolysis/myositis. Basically my immune system attacked all my muscles resulting in severe muscle wasting. I am 5’8” and got down to 98lbs. I could barely walk, talk, eat or drink. I looked like I’d had a stroke.

You need to have the doctor pull his CK level (creatine kinase). CK is the muscle wasting enzyme produced by the wasted muscle.

It took a week in the hospital before they figured out I was having a reaction to Keytruda. I was put on 100mg of prednisone and it took almost 9 months for me to recover

17. Should that cancer/research center offer a targeted treatment plan or clinical trial that you don’t offer, would you be willing to collaborate with them for follow-up care?

18. I try hard to understand my cancer.. Mutations versus no mutation.. how was it determined that I have no mutations and am pdl-1 less than 1 percent.. was this determined through bio marker testing? Should I have bio marker testing again to see if my cancer changed? Would the blood biopsy I had in November in London show what changed? I was told I was not eligible for the CAPTUR trial.. (see attachment of what the trial was regarding).

*** Trying to understand my cancer:

What are checkpoint inhibitors? Is this immunotherapy drugs that inhibit the proteins which are called checkpoints (in this case my protein is called (PDL-1/checkpoint) from causing more cancer)?
What is an example of an immune checkpoint inhibitor?

A type of drug that blocks proteins called checkpoints that are made by some types of immune system cells, such as T cells, and some cancer cells. … Examples of checkpoint proteins found on T cells or cancer cells include PD-1/PD-L1 and CTLA-4/B7-1/B7-2. Some immune checkpoint inhibitors are used to treat cancer

What drugs are immune checkpoint inhibitors?

Checkpoint inhibitor drugs that target PD-1 or PD-L1
• Pembrolizumab (Keytruda)
• Nivolumab (Opdivo)
• Cemiplimab (Libtayo)

What is checkpoint immunotherapy?

Checkpoint inhibitors are a type of immunotherapy. They block proteins that stop the immune system from attacking the cancer cells.
Cancer drugs do not always fit easily into a certain type of treatment (Not sure how this sentence fits in to the above statement)??

REPLY
@janlanderz

The other questions I had are basic… like can i go to dentist, etc… think these are the questions that bothered him….

12. Since there was a change in my cancer, does this mean I am no longer pdl-1 less than 1 % and what exactly does pdl-1 less than 1 % mean as opposed to higher numbers and or mutations?

13. https://news.yahoo.com/moves-medicine-never-smokers-develop-200303715.html
Is stating that they find that especially in non-smokers that estrogen level may have a factor in these women getting lung cancer. I went through the change of life for 14 years.. think that could of contributed to my cancer even though I had been a smoker? Do we know what caused my cancer? Can you tell whether it was caused by asbestos or smoking, etc..?

15. As far as I know my first oncologist sent my tissue Biopsy to Princess Margaret Hospital to see if I would qualify for immunotherapy before starting me on chemo in hopes I would qualify… not sure why I did not qualify then, but do now… however, was the Test Bio Marker testing?
• And was I tested for the different types of cancers below?
• And is this how they know I am PDL-1 less than 1%?

'THIS WAS A GENERAL STATEMENT I COPY AND PASTED FROM SOMEWHERE, JUST WANTED TO KNOW IF I WAS TESTED FOR ALL THESE DIFFERENT TYPES OF CAANCER)
(Molecular diagnostics result from Princess Margaret showed that they tested for AKT1, BRAF, (/EGFR, ERBB2, KRAS, PIK3CA, RET and TP53 through Next Generation Sequencing, and ALK, ROS1 through immunohistochemistry, and PD-L1 as well. All samples were taken through fine needle aspiration.

16. I have been having which seems like muscle pain in my upper arms in the front… should we be checking my CK(Creatine Kinase) levels.. Seen this on a support website of someone else who was going through immunotherapy..see their statement below:
Jill Nolan Morris I had a severe reaction to Keytruda. I ended up with rhabdomyolysis/myositis. Basically my immune system attacked all my muscles resulting in severe muscle wasting. I am 5’8” and got down to 98lbs. I could barely walk, talk, eat or drink. I looked like I’d had a stroke.

You need to have the doctor pull his CK level (creatine kinase). CK is the muscle wasting enzyme produced by the wasted muscle.

It took a week in the hospital before they figured out I was having a reaction to Keytruda. I was put on 100mg of prednisone and it took almost 9 months for me to recover

17. Should that cancer/research center offer a targeted treatment plan or clinical trial that you don’t offer, would you be willing to collaborate with them for follow-up care?

18. I try hard to understand my cancer.. Mutations versus no mutation.. how was it determined that I have no mutations and am pdl-1 less than 1 percent.. was this determined through bio marker testing? Should I have bio marker testing again to see if my cancer changed? Would the blood biopsy I had in November in London show what changed? I was told I was not eligible for the CAPTUR trial.. (see attachment of what the trial was regarding).

*** Trying to understand my cancer:

What are checkpoint inhibitors? Is this immunotherapy drugs that inhibit the proteins which are called checkpoints (in this case my protein is called (PDL-1/checkpoint) from causing more cancer)?
What is an example of an immune checkpoint inhibitor?

A type of drug that blocks proteins called checkpoints that are made by some types of immune system cells, such as T cells, and some cancer cells. … Examples of checkpoint proteins found on T cells or cancer cells include PD-1/PD-L1 and CTLA-4/B7-1/B7-2. Some immune checkpoint inhibitors are used to treat cancer

What drugs are immune checkpoint inhibitors?

Checkpoint inhibitor drugs that target PD-1 or PD-L1
• Pembrolizumab (Keytruda)
• Nivolumab (Opdivo)
• Cemiplimab (Libtayo)

What is checkpoint immunotherapy?

Checkpoint inhibitors are a type of immunotherapy. They block proteins that stop the immune system from attacking the cancer cells.
Cancer drugs do not always fit easily into a certain type of treatment (Not sure how this sentence fits in to the above statement)??

Jump to this post

@janlanderz– These seem like very intelligent questions. I hope that you get all of answers in your visit with him.

REPLY
@janlanderz

The other questions I had are basic… like can i go to dentist, etc… think these are the questions that bothered him….

12. Since there was a change in my cancer, does this mean I am no longer pdl-1 less than 1 % and what exactly does pdl-1 less than 1 % mean as opposed to higher numbers and or mutations?

13. https://news.yahoo.com/moves-medicine-never-smokers-develop-200303715.html
Is stating that they find that especially in non-smokers that estrogen level may have a factor in these women getting lung cancer. I went through the change of life for 14 years.. think that could of contributed to my cancer even though I had been a smoker? Do we know what caused my cancer? Can you tell whether it was caused by asbestos or smoking, etc..?

15. As far as I know my first oncologist sent my tissue Biopsy to Princess Margaret Hospital to see if I would qualify for immunotherapy before starting me on chemo in hopes I would qualify… not sure why I did not qualify then, but do now… however, was the Test Bio Marker testing?
• And was I tested for the different types of cancers below?
• And is this how they know I am PDL-1 less than 1%?

'THIS WAS A GENERAL STATEMENT I COPY AND PASTED FROM SOMEWHERE, JUST WANTED TO KNOW IF I WAS TESTED FOR ALL THESE DIFFERENT TYPES OF CAANCER)
(Molecular diagnostics result from Princess Margaret showed that they tested for AKT1, BRAF, (/EGFR, ERBB2, KRAS, PIK3CA, RET and TP53 through Next Generation Sequencing, and ALK, ROS1 through immunohistochemistry, and PD-L1 as well. All samples were taken through fine needle aspiration.

16. I have been having which seems like muscle pain in my upper arms in the front… should we be checking my CK(Creatine Kinase) levels.. Seen this on a support website of someone else who was going through immunotherapy..see their statement below:
Jill Nolan Morris I had a severe reaction to Keytruda. I ended up with rhabdomyolysis/myositis. Basically my immune system attacked all my muscles resulting in severe muscle wasting. I am 5’8” and got down to 98lbs. I could barely walk, talk, eat or drink. I looked like I’d had a stroke.

You need to have the doctor pull his CK level (creatine kinase). CK is the muscle wasting enzyme produced by the wasted muscle.

It took a week in the hospital before they figured out I was having a reaction to Keytruda. I was put on 100mg of prednisone and it took almost 9 months for me to recover

17. Should that cancer/research center offer a targeted treatment plan or clinical trial that you don’t offer, would you be willing to collaborate with them for follow-up care?

18. I try hard to understand my cancer.. Mutations versus no mutation.. how was it determined that I have no mutations and am pdl-1 less than 1 percent.. was this determined through bio marker testing? Should I have bio marker testing again to see if my cancer changed? Would the blood biopsy I had in November in London show what changed? I was told I was not eligible for the CAPTUR trial.. (see attachment of what the trial was regarding).

*** Trying to understand my cancer:

What are checkpoint inhibitors? Is this immunotherapy drugs that inhibit the proteins which are called checkpoints (in this case my protein is called (PDL-1/checkpoint) from causing more cancer)?
What is an example of an immune checkpoint inhibitor?

A type of drug that blocks proteins called checkpoints that are made by some types of immune system cells, such as T cells, and some cancer cells. … Examples of checkpoint proteins found on T cells or cancer cells include PD-1/PD-L1 and CTLA-4/B7-1/B7-2. Some immune checkpoint inhibitors are used to treat cancer

What drugs are immune checkpoint inhibitors?

Checkpoint inhibitor drugs that target PD-1 or PD-L1
• Pembrolizumab (Keytruda)
• Nivolumab (Opdivo)
• Cemiplimab (Libtayo)

What is checkpoint immunotherapy?

Checkpoint inhibitors are a type of immunotherapy. They block proteins that stop the immune system from attacking the cancer cells.
Cancer drugs do not always fit easily into a certain type of treatment (Not sure how this sentence fits in to the above statement)??

Jump to this post

@janlanderz, I completely agree with @merpreb. These are intelligent questions and you have a right to ask them. There was likely too little time in your originally scheduled appointment. I encourage you to persist. Some of the answers to your questions may lead to new questions. That's okay too. Keep asking. You may also be able to ask a oncology nurse some of the questions.

I, too, would be interested to understand why your case did not initially qualify for immunotherapy and then, after the chemo didn't work, immunotherapy became an option. There can be many reasons for this, which can be complicated. It is a balancing act between population based facts (percentage of people with same tumor type responding positively to specific treatment), drug formularies (which drugs are paid for according to your province), and the individual patient. There is never one size that fits all.

REPLY
@colleenyoung

@janlanderz, I completely agree with @merpreb. These are intelligent questions and you have a right to ask them. There was likely too little time in your originally scheduled appointment. I encourage you to persist. Some of the answers to your questions may lead to new questions. That's okay too. Keep asking. You may also be able to ask a oncology nurse some of the questions.

I, too, would be interested to understand why your case did not initially qualify for immunotherapy and then, after the chemo didn't work, immunotherapy became an option. There can be many reasons for this, which can be complicated. It is a balancing act between population based facts (percentage of people with same tumor type responding positively to specific treatment), drug formularies (which drugs are paid for according to your province), and the individual patient. There is never one size that fits all.

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I have an appointment in London Ontario next week.. to talk about the results of a blood biopsy I had.. going to ask that oncologist some of the questions to try and get clarity… see the difference in answers if any… just sayin 🙂

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@janlanderz

I have an appointment in London Ontario next week.. to talk about the results of a blood biopsy I had.. going to ask that oncologist some of the questions to try and get clarity… see the difference in answers if any… just sayin 🙂

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@janlanderz– Excellent news. I am so glad that you followed up and are searching for the answers that you deserve! Please keep us informed after your appointment and good luck!

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@janlanderz

I have an appointment in London Ontario next week.. to talk about the results of a blood biopsy I had.. going to ask that oncologist some of the questions to try and get clarity… see the difference in answers if any… just sayin 🙂

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@janlanderz will you still be able to go to your appointment next week? Are you able to do the appointment by phone or video?

REPLY

My husband has small cell lung cancer, stage 4. He was diagnosed in January of 2020 and starts his 4th series of treatment March 22nd. He has had little or no side effects , only hair loss. So far ,so good, with his MRI showing his two major tumors have shrunk. He golfs once or twice a week and plays pickleball 4 times a week. With the coronavirus, we have not played since last week . We. Are looking for an outside park to play today.

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@popkorhn

My husband has small cell lung cancer, stage 4. He was diagnosed in January of 2020 and starts his 4th series of treatment March 22nd. He has had little or no side effects , only hair loss. So far ,so good, with his MRI showing his two major tumors have shrunk. He golfs once or twice a week and plays pickleball 4 times a week. With the coronavirus, we have not played since last week . We. Are looking for an outside park to play today.

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@popkorhn– Good morning. This just thrills me about your husband's response to his treatment. Please make sure to continue to protect yourselves and keep on being healthy!

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@merpreb

@popkorhn– Good morning. This just thrills me about your husband's response to his treatment. Please make sure to continue to protect yourselves and keep on being healthy!

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Nancy (shortshot) I have two kinds of lung cancer. One is Mesothelioma, in my left lung, and small cell cancer and I was diagnosed in January 2016. I don't know what # it is but this has been a long fight. I will be 87 years old tomorrow and the fight ti hard. Jesus is my Friend and has helped me all this time. He keeps me half way sane in dealing with all this stuff. Tears just stuff up my nose and makes my eyes red and depression is not a friend. I can write my feelings here and sometimes it helps. I could gout in the yard, walk on the beach (hard with a walker though) my church is closed and most everyone is afraid to even use the phone. So no one to talk to. I can hardly wait to see how long I have to wait for my book to be printed. It is finished, also proof read and waiting for the first book to see that all is well and printing can be done. I want to have a book signing on my back porch. Will see how that goes. Best to all……. Nancy

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