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Steff

Keytruda, 1 year later

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17 hours ago, Steff said:

Hi friends,

I have a great update on my mom...get your happy dance shoes on!

After being on a "treatment break" from Keytruda since October, she received her first CT results since the break - NO evidence of active disease!  She will remain on a "treatment break" as long as she continues with no active disease.  Although I was not surprised to hear this, it's always a time to celebrate how far she has come.  It's a positive reminder how celebrating life's day-to-day activities is important.  Unfortunately, dealing with lung cancer and it's side effects are a day-to-day activity, so spending time to celebrate is important to us.

While she does not have evidence of active disease, she does have evidence of scar growth in her trachea (where the tumor was).  The "junk" in her lungs that is being called pneumonitis has gotten much better.  So by the looks of her CT, she should be breathing much better.  With the growing scar in her trachea, it could be closing off enough to cause her shortness of breath, so we will pursue that option at her next pulmonologist appointment in a few weeks.

Here is also an important update on where she is at for side effects from Keytruda and some of what we learned yesterday:

-My mom is still having trouble from the areas that are inflamed in her GI area.  She has weaned herself down to 20 milligrams of prednisone with her doctor's urging.  She attempted 10 milligrams, but was too nauseous.  She continues to wake up at about 2am with severe stomach cramping.  She takes her prednisone and it calms down within an hour.  If the pain continues and she can't wean herself off of the prednisone her doc will take a look to see if anything else is going on.

-Her bad rash is nearly gone (probably due to the help of steroids)

-She began to have trouble with her vision.  We both assumed it was a new side effect from an overactive immune system.  Her oncologist is 99% positive that it is due to the prednisone.  She already had an appointment with her ophthalmologist scheduled, so she will look into this issue a bit more with him.

For those of you reading this and are still reeling from the trauma of a lung cancer diagnosis, I hope you can take the message of HOPE from this post.  While my mom has been put through a lot of the past 3 years, she is winning.  She is still strong, she still smiles everyday, and she is still doing the things she loves.  And we are taking a break from all of the stress in our life and travelling to Idaho to see Elton John on Friday (going to concerts is our thing 😊).  And while I will be bawling because this is supposedly his farewell tour, I will also be celebrating that my mom is here to see it and can cry with me!

Take Care,

Steff

 

I am so happy for you and your mother dear. May God bless you. One more thing I want to add is your mother is very lucky to have you as her daughter. 

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On 1/10/2019 at 1:33 AM, hope16 said:

I am so happy for you and your mother dear. May God bless you. One more thing I want to add is your mother is very lucky to have you as her daughter. 

Thank you!

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On 8/14/2018 at 9:15 AM, Steff said:

Hi all,

Since my other discussion thread was getting quite long and it's been 1 year since my mom started Keytruda, I decided to start a new thread here, where it might be better seen by those who are looking for information on immunotherapy.  

So, the 1 year update on my mom....she survived and lived to talk about it!!!  She got her CT results yesterday and it was all good news....area around the cancer is stable and may look better (inflammation-wise).  We have not been able to see the mass on the back of her trachea since October (2 months after beginning chemo + Keytruda).  It still could be there, but it is not causing any problems.  I don't know if the term NED will ever be used with her since we cannot get a perfect picture of where the mass was, so we are just using the term "stable".  So, for us, "stable" is great news!!!  There is a "shadow" that is showing up in her left lung that appeared out of nowhere.  Her pulmonologist thinks it is most likely some inflammation or infection - he will keep an eye on it, but is not alarmed by it.

Her shortness of breath still persists, she has 1 more heart test to do to see if that is the problem.  If it is not, we are to the point where we will likely accept shortness of breath as a new normal for her.  Luckily, her pulmonologist does not believe that Keytruda is the culprit, so we plan to stay on it as long as possible.

Keytruda side effects: severe itchy skin - it drives her crazy especially at night.  She currently takes Benedryl at night if itching is out of control and she has also found an Aveeno excema cream that relieves itching for a bit.  Although the itching is bothersome for her, she would rather deal with it than cancer.  Other side effect, but it is controlled by meds is her thyroid.  She had a slow thyroid to begin with. It got slower, she just increased her meds and it is now controlled - no big deal.  Docs keep an eye on it and increase/decrease thyroid med dose when needed.

This time last year, I felt hopeless.  My mom's lung cancer recurrence was a punch in the gut.  I was heart broken when we were told that due to the location of the mass, it could not be surgically removed, nor was it recommended for the first treatment attempt to use radiation (some of the mass was in the original radiation field from her previous bout of lung cancer).  So came the recommendation of Keytruda + Alimta/Carbo.  I was unhappy and scared of this new "immunotherapy stuff".  But this"immunotherapy stuff" is the best thing that has happened for my mom's lung cancer.  If you are a newcomer to lung cancer and/or immunotherapy, do know there is hope.  My mom has more hope now of surviving cancer than when she was originally diagnosed in 2015.  And it is all due to continued lung cancer research and development of new treatment options.  

My main take away from this last year is: 1) My mom is tough as nails, 2) Even in the darkness of a lung cancer diagnosis, there is hope.

Take care,

Steff

What was your Mom's actual diagnosis? Surgery was never an option given to my Uncle. But we found out he had it after going to the ER because he was having difficulty breathing, and started coughing up blood. They did treat him for pnumonia, but after an MRI they came back and said he had cancer ☹️ the mass was on his airway. Later we were told it was stage IV inoperable, and the only thing they could do was to try and treat it. So radiation came first. Which did help lift the mass of the airway and he was able to breathe without oxygen eventually. Now he is doing the 2 different Chemo's with Keytruda. He goes every Friday. Next week will be month 2. So my question is...is this going to help him to have quality of life, or just prolonging his life? Can this actually cure or stop the cancer? Even though they said it is incurable. 💔🙏

Also since I am new. Is this the correct way to respond on a post? *Were it says quote 🤔

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Just now, Tashia said:

What was your Mom's actual diagnosis? Surgery was never an option given to my Uncle. But we found out he had it after going to the ER because he was having difficulty breathing, and started coughing up blood. They did treat him for pnumonia, but after an MRI they came back and said he had cancer ☹️ the mass was on his airway. Later we were told it was stage IV inoperable, and the only thing they could do was to try and treat it. So radiation came first. Which did help lift the mass of the airway and he was able to breathe without oxygen eventually. Now he is doing the 2 different Chemo's with Keytruda. He goes every Friday. Next week will be month 2. So my question is...is this going to help him to have quality of life, or just prolonging his life? Can this actually cure or stop the cancer? Even though they said it is incurable. 💔🙏

Also since I am new. Is this the correct way to respond on a post? *Were it says quote 🤔

It also seemed to spread quickly. More modules showing up, and one found in his lower back.

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Tashia,

In responding to a post, you can quote the specific post you are interested in.  But, in your case, a good way to use your site is to post in the Introduce Yourself section of our forum. On the upper right side of the introductory page, you should see a Start new topic box.  Checking that and posting allows everyone to see your story and realize you are new.

From your description of your uncle's treatment, it sounds like he is receiving first-line standard of care treatment for inoperable Stage IV lung cancer. He is receiving combination chemotherapy -- conventional chemo paired with Keytruda, a very effective immunotherapy drug.  As Steff reported on her mother's immunotherapy treatment, this combination can be very effective.

So others here can provide first hand information, you might tell us about the type of lung cancer your uncle has. 

You have 3 questions: will this treatment improve his quality of life; will it prolong his life; and will it cure or stop his cancer?  Life quality in treatment depends on a lot of factors: age, general health condition, complicating serious illness, and many more.  If his first line treatment works, his life quality will improve.  You've already reported some improvement in his breathing. Will treatment prolong life?  That is the goal and for very many, prolonged life is achieved.  In my case, treatment has allowed me to live almost 15 years beyond diagnosis.  Can the treatment cure?  We don't use the cure word in the lung cancer community but rather use the term no evidence of disease or NED.  Yes, this treatment can allow your uncle to achieve NED.

It is not unusual for other nodules to occur while receiving immunotherapy treatment.  It takes time for the immune system to be primed to recognize cancer cells and during early treatment, scans often show tumor growth or new metastasis. How long is your uncle's treatment period?  What are the other drugs he is receiving besides Keytruda?

Welcome here.  We hope your uncle's treatment resolves his lung cancer.

Stay the course.

Tom

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Tashia -

My mom's diagnosis is non small cell adenocarcinoma. Her original diagnosis was in 2015. She is on her first recurrence, diagnosed in 2017. She had a lobectomy with follow up chemo and radiation. Immunotherapy was not available when she was initially diagnosed.  For this recurrence, she was tested for PD-L1. She tests positive for over 90% of her cancer cells.  When she went on Keytruda + carbo/alimta, it was just FDA approved a few months prior.  It worked wonders for her, but did not come without side effects. Once she was on keytruda alone, her side effects were mild.

Nothing will "cure" your uncle's cancer or my mom's. Lung cancer is persistent and often pops back up. But it can slow down the cancer or make it disappear. You ask if this treatment just prolongs life or gives quality of life. For my mom, it did both. I cant tell what will happen with your uncle. But your uncle is receiving the standard of care for advanced stage lung cancer.  

In a few more infusions, your uncle will have another CT or chest xray. It may very well look worse...my mom's first few scans looked worse just like lots of other people's.  Tumors/nodules/masses typically become inflamed and look "bigger" in scans for a few months.

The beginning of treatment is always a time for questions and worry. The questions and concerns you have are typical. Please feel free to continue to reach out with your questions and concerns.

Take care,

Steff

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6 hours ago, Tom Galli said:

Tashia,

In responding to a post, you can quote the specific post you are interested in.  But, in your case, a good way to use your site is to post in the Introduce Yourself section of our forum. On the upper right side of the introductory page, you should see a Start new topic box.  Checking that and posting allows everyone to see your story and realize you are new.

From your description of your uncle's treatment, it sounds like he is receiving first-line standard of care treatment for inoperable Stage IV lung cancer. He is receiving combination chemotherapy -- conventional chemo paired with Keytruda, a very effective immunotherapy drug.  As Steff reported on her mother's immunotherapy treatment, this combination can be very effective.

So others here can provide first hand information, you might tell us about the type of lung cancer your uncle has. 

You have 3 questions: will this treatment improve his quality of life; will it prolong his life; and will it cure or stop his cancer?  Life quality in treatment depends on a lot of factors: age, general health condition, complicating serious illness, and many more.  If his first line treatment works, his life quality will improve.  You've already reported some improvement in his breathing. Will treatment prolong life?  That is the goal and for very many, prolonged life is achieved.  In my case, treatment has allowed me to live almost 15 years beyond diagnosis.  Can the treatment cure?  We don't use the cure word in the lung cancer community but rather use the term no evidence of disease or NED.  Yes, this treatment can allow your uncle to achieve NED.

It is not unusual for other nodules to occur while receiving immunotherapy treatment.  It takes time for the immune system to be primed to recognize cancer cells and during early treatment, scans often show tumor growth or new metastasis. How long is your uncle's treatment period?  What are the other drugs he is receiving besides Keytruda?

Welcome here.  We hope your uncle's treatment resolves his lung cancer.

Stay the course.

Tom

Tom

My Uncle is on a 3 month treatment period. He is at his 2nd month point. I believe they are to do another scan this coming Friday. He is having two types of Chemo and Keytruda, that is only drugs they are giving him. And....I have posted in Introduce Yourself section. All I know is it is NSCLC squamous cell. Thank you for your response. And that is great you have been keeping up the good fight for 15 yrs.! 

Tashia

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3 hours ago, Steff said:

Tashia -

My mom's diagnosis is non small cell adenocarcinoma. Her original diagnosis was in 2015. She is on her first recurrence, diagnosed in 2017. She had a lobectomy with follow up chemo and radiation. Immunotherapy was not available when she was initially diagnosed.  For this recurrence, she was tested for PD-L1. She tests positive for over 90% of her cancer cells.  When she went on Keytruda + carbo/alimta, it was just FDA approved a few months prior.  It worked wonders for her, but did not come without side effects. Once she was on keytruda alone, her side effects were mild.

Nothing will "cure" your uncle's cancer or my mom's. Lung cancer is persistent and often pops back up. But it can slow down the cancer or make it disappear. You ask if this treatment just prolongs life or gives quality of life. For my mom, it did both. I cant tell what will happen with your uncle. But your uncle is receiving the standard of care for advanced stage lung cancer.  

In a few more infusions, your uncle will have another CT or chest xray. It may very well look worse...my mom's first few scans looked worse just like lots of other people's.  Tumors/nodules/masses typically become inflamed and look "bigger" in scans for a few months.

The beginning of treatment is always a time for questions and worry. The questions and concerns you have are typical. Please feel free to continue to reach out with your questions and concerns.

Take care,

Steff

Steff

Thank you for sharing, and taking the time to respond back to me. I appreciate it.

Tashia

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