Anyone out there living with stage 4 lung cancer?

Posted by nursed2075 @nursed2075, Tue, Mar 10 2:53pm

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

@nursed2075– Welcome to Mayo Connect. Yes, we have a lung cancer group. I am the mentor for lung cancer and health. I do have stage 4 lung cancer. Many people in the lung cancer group do. I'm horrible on my cell phone otherwise I'd put the link here. You can access it the same way you found this group.
Why are you interested in stage 4 lung cancer patients? Have you been diagnosed with it?

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Yes i have been diagnosed. I have had 2 rounds of chemo, and I'm wiped out. No appetite for food. Any suggestions?

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@nursed2075

Yes i have been diagnosed. I have had 2 rounds of chemo, and I'm wiped out. No appetite for food. Any suggestions?

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@nursed2075– having cancer sucks and so does chemo. I drank tons of water to help get the chemicals out of my system. One of the chemicals that I had was cisplatin and that absolutely killed my appetite. I was also wiped out.
I forced myself to eat, small helpings of at least some protein. I also could handle pastries and the like.
Believe it or not exercising will help with energy.
What type of lung cancer do you have? Did you have any surgery?
Do you have family at home to help you?

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@merpreb

@nursed2075– having cancer sucks and so does chemo. I drank tons of water to help get the chemicals out of my system. One of the chemicals that I had was cisplatin and that absolutely killed my appetite. I was also wiped out.
I forced myself to eat, small helpings of at least some protein. I also could handle pastries and the like.
Believe it or not exercising will help with energy.
What type of lung cancer do you have? Did you have any surgery?
Do you have family at home to help you?

Jump to this post

Adenocarcinoma with met. Its in my left lungs. Did not spread anywhere. Stg 4. I hope that I have the right treatment plan. I am scared but optimistic.

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Hi @nursed2075, I'd like to add my welcome. You'll notice that I modified the title of your discussion and moved it to the Lung Cancer group here: https://connect.mayoclinic.org/group/lung-cancer/

You'll find many relevant and helpful discussions in the group. And supportive, information members like @merpreb, @schmeeckle64 @burrkay @donnalb @richcolleen @janlanderz @nicee @jiatennis @edb.

Nursed, I assume this a new diagnosis. I can imagine you're scared, but love that you're approaching this with a healthy dose of optimism. What treatment plan is being recommended for you?

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Welcome! I’m living with stage 4 lung cancer which nodules had spread to liver and stomach. Did chemo treatments (Carbopltin, Pemetrexed , pembrolieumab) for 7 or 8 months. Tough road so went on Keytruda and have stayed the same since except do not get sick. Have blow out for a day and half and than feel good till next treatment. (Every 21 days). So far so good.

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@merpreb

@nursed2075– Welcome to Mayo Connect. Yes, we have a lung cancer group. I am the mentor for lung cancer and health. I do have stage 4 lung cancer. Many people in the lung cancer group do. I'm horrible on my cell phone otherwise I'd put the link here. You can access it the same way you found this group.
Why are you interested in stage 4 lung cancer patients? Have you been diagnosed with it?

Jump to this post

update March 9th results of Feb 28th scan…see below.

Re-posting the status of my cancer… … I have Adenocarcinoma Non small cell lung cancer stage 4.. PDL-1 less than 1% with no mutations… I was diagnosed in December of 2018 but did not begin treatments until late February 2019 by the time they finalized my PET scan, sending my biopsy to Toronto to see if I qualified for immunotherapy etc… my oncologist said that the information came back from Toronto that I did not qualify for immunotherapy so they began my therapy with two different chemo drugs… CARBOplatin and Premetrexed (aka:Altima) I was given the combo of the two chemo drugs for 4 infusions every 3 weeks… then just premetrexed for the next 7 infusions every 3 weeks.. I was told by my oncologist that in Oct 2019 that the chemo drugs were no longer shrinking my tumours.. so They began giving me infusions of Nivolumab (aka: Opdivo) every 4 weeks, my last infusion to date was on Feb 13th, 5 infusions so far… I will not know if the immunotherapy is working until I have my next scheduled CAT scan this Friday, Feb 28th.. will get the results from my oncologist on March 9th. I am praying for a miracle to hear NED… I know this drug has done wonders for many people… The only thing that confuses me at this point is why I was told I did not qualify for the drug when I was first diagnosed and now they are giving me the drug… so who knows.. I will be asking my new oncologist on my March 9th appointment that question and will let you know the outcome either way… Please feel free to share your journey in hopes that other people will learn from it or find out there is hope … and never accept the diagnosis of there is nothing more we can do for you… ALWAYS SEEK A SECOND OPINION and never give up hope…

OKay.. .here are the results of my scan after 5 infusions of Novolumab (Opdivo) from Feb 28, 2020 scan… guess its kind of stable.. 2 steps forward and one step back…The tiny nodules identified within the right lower lobe the lung have almost completely resolved tiny nodules noted within the right lower lobe the lung measuring 2 mm. The subsegmental atelectatic changes with some degree of speculation identified involving the right lower lobe the lung have also significantly improved, on the prior examination speculated area measured 1.2 x 0.6 cm in size the current examination measures 1.2 x 0.4 cm in size less nodules are noted in this location. Multiple nodules noted involving the left upper lobe the lung have also resolved. Of note however, there is a larger mass identified involving the left lower lobe the lung measuring 1.4 x 1.5 cm in size, on the prior examination measuring 0.8 x 1.2 cm in size is also a new nodule identified involving the lower aspect of the left upper lobe the lung measuring 0.5 cm x 0.5 cm in size.

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Hi: Have you heard about GO2Foundation? There is an amazing group of lung cancer patients, survivors and advocates with helpful information and support all dedicated to lung cancer. All the best from a 12 year lung cancer survivor.

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@colleenyoung

Hi @nursed2075, I'd like to add my welcome. You'll notice that I modified the title of your discussion and moved it to the Lung Cancer group here: https://connect.mayoclinic.org/group/lung-cancer/

You'll find many relevant and helpful discussions in the group. And supportive, information members like @merpreb, @schmeeckle64 @burrkay @donnalb @richcolleen @janlanderz @nicee @jiatennis @edb.

Nursed, I assume this a new diagnosis. I can imagine you're scared, but love that you're approaching this with a healthy dose of optimism. What treatment plan is being recommended for you?

Jump to this post

@colleenyoung– Thank you

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@nursed2075

Adenocarcinoma with met. Its in my left lungs. Did not spread anywhere. Stg 4. I hope that I have the right treatment plan. I am scared but optimistic.

Jump to this post

@nursed2075– What is your treatment plan?

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@janlanderz

update March 9th results of Feb 28th scan…see below.

Re-posting the status of my cancer… … I have Adenocarcinoma Non small cell lung cancer stage 4.. PDL-1 less than 1% with no mutations… I was diagnosed in December of 2018 but did not begin treatments until late February 2019 by the time they finalized my PET scan, sending my biopsy to Toronto to see if I qualified for immunotherapy etc… my oncologist said that the information came back from Toronto that I did not qualify for immunotherapy so they began my therapy with two different chemo drugs… CARBOplatin and Premetrexed (aka:Altima) I was given the combo of the two chemo drugs for 4 infusions every 3 weeks… then just premetrexed for the next 7 infusions every 3 weeks.. I was told by my oncologist that in Oct 2019 that the chemo drugs were no longer shrinking my tumours.. so They began giving me infusions of Nivolumab (aka: Opdivo) every 4 weeks, my last infusion to date was on Feb 13th, 5 infusions so far… I will not know if the immunotherapy is working until I have my next scheduled CAT scan this Friday, Feb 28th.. will get the results from my oncologist on March 9th. I am praying for a miracle to hear NED… I know this drug has done wonders for many people… The only thing that confuses me at this point is why I was told I did not qualify for the drug when I was first diagnosed and now they are giving me the drug… so who knows.. I will be asking my new oncologist on my March 9th appointment that question and will let you know the outcome either way… Please feel free to share your journey in hopes that other people will learn from it or find out there is hope … and never accept the diagnosis of there is nothing more we can do for you… ALWAYS SEEK A SECOND OPINION and never give up hope…

OKay.. .here are the results of my scan after 5 infusions of Novolumab (Opdivo) from Feb 28, 2020 scan… guess its kind of stable.. 2 steps forward and one step back…The tiny nodules identified within the right lower lobe the lung have almost completely resolved tiny nodules noted within the right lower lobe the lung measuring 2 mm. The subsegmental atelectatic changes with some degree of speculation identified involving the right lower lobe the lung have also significantly improved, on the prior examination speculated area measured 1.2 x 0.6 cm in size the current examination measures 1.2 x 0.4 cm in size less nodules are noted in this location. Multiple nodules noted involving the left upper lobe the lung have also resolved. Of note however, there is a larger mass identified involving the left lower lobe the lung measuring 1.4 x 1.5 cm in size, on the prior examination measuring 0.8 x 1.2 cm in size is also a new nodule identified involving the lower aspect of the left upper lobe the lung measuring 0.5 cm x 0.5 cm in size.

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@janlanderz– Good morning Jan. Some of this is terribly encouraging. I know that when medicine doesn't do what you hope it will that it is terribly discouraging and frustrating and scary. I too have several lesions that have grown and lots of tiny ground-glass nodules.
What does your new oncologist say about what the next step will be for you? Do you like him and have confidence in him?

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@richcolleen

Welcome! I’m living with stage 4 lung cancer which nodules had spread to liver and stomach. Did chemo treatments (Carbopltin, Pemetrexed , pembrolieumab) for 7 or 8 months. Tough road so went on Keytruda and have stayed the same since except do not get sick. Have blow out for a day and half and than feel good till next treatment. (Every 21 days). So far so good.

Jump to this post

@richcolleen– Hi! What do you mean by a blow-out? How do you feel with this scedule? What are your side effects?

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@richcolleen

Welcome! I’m living with stage 4 lung cancer which nodules had spread to liver and stomach. Did chemo treatments (Carbopltin, Pemetrexed , pembrolieumab) for 7 or 8 months. Tough road so went on Keytruda and have stayed the same since except do not get sick. Have blow out for a day and half and than feel good till next treatment. (Every 21 days). So far so good.

Jump to this post

Did you have any fluids in lungs or around heart? Or continuous coughing?

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Stool blow outs. Usually last a day and half.

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Yes drained almost a quart in lung lining.

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