Robert Macaulay Posted January 9, 2019 Share Posted January 9, 2019 Great news Have fun on the yellow brick road. Bob Link to comment Share on other sites More sharing options...
Barb1260 Posted January 9, 2019 Share Posted January 9, 2019 Wonderful news! Enjoy the concert! Link to comment Share on other sites More sharing options...
hope16 Posted January 10, 2019 Share Posted January 10, 2019 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. Link to comment Share on other sites More sharing options...
Steff Posted January 11, 2019 Author Share Posted January 11, 2019 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! Link to comment Share on other sites More sharing options...
Tashia Posted January 20, 2019 Share Posted January 20, 2019 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 🤔 Link to comment Share on other sites More sharing options...
Tashia Posted January 20, 2019 Share Posted January 20, 2019 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. Link to comment Share on other sites More sharing options...
Tom Galli Posted January 20, 2019 Share Posted January 20, 2019 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 Link to comment Share on other sites More sharing options...
Steff Posted January 20, 2019 Author Share Posted January 20, 2019 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 Link to comment Share on other sites More sharing options...
Tashia Posted January 21, 2019 Share Posted January 21, 2019 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 Link to comment Share on other sites More sharing options...
Tashia Posted January 21, 2019 Share Posted January 21, 2019 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 Link to comment Share on other sites More sharing options...
Steff Posted April 17, 2019 Author Share Posted April 17, 2019 April 2019 Update: After stopping Keytruda due to severe side effects in October 2018, my mom's most recent CT scan continues to show NED. Throughout her treatment, she has been having CT's every 3 months as recommended. Since all have been stable for awhile now (prior to stopping Keytruda), her doc has recommended CT's every 4 months instead of 3 months. In the meantime, she will continue to see her pulmonologist for her continued shortness of breath and lung inflammation. The latest side effect of her treatment, including steroid treatment for her GI inflammation from Keytruda, is very high blood sugars (in the 500's). So she is now on insulin morning and night and with every meal. Thankfully the insulin has regulated her blood sugars and we shall see what will come of diabetes. Take Care, Steff Link to comment Share on other sites More sharing options...
Barb1260 Posted April 17, 2019 Share Posted April 17, 2019 Great news on the scans! Sorry about the side effects. Link to comment Share on other sites More sharing options...
Rower Michelle Posted April 19, 2019 Share Posted April 19, 2019 Hey Steff- Will take whatever good news we can get & NED is our best friend! Thanks for sharing! Any concerts planned this summer? Happy Trails! Michelle Link to comment Share on other sites More sharing options...
LexieCat Posted April 21, 2019 Share Posted April 21, 2019 Great news, Steff! The diabetes should be manageable. It's important to watch the sugars like a hawk. I had gestational diabetes and had to take insulin. Thankfully it went away the minute I gave birth, but I'm at risk for Type II later in life, so still keeping an eye on my glucose levels. Link to comment Share on other sites More sharing options...
Steff Posted April 22, 2019 Author Share Posted April 22, 2019 Thank you ladies! Michelle - Yes, I have a couple of concerts scheduled so far this summer...in June my mom and I go see New Kids on the Block for probably the 8th time (yes, they are still around!), and my husband and I will go see our first concert together as a couple, Toby Keith. I'm not a huge country fan, but when he suggested it, I jumped at the chance because he never wants to go to concerts. Our last concert was Aerosmith 18 years ago, before we officially started dating! So I am frantically trying to learn some of the lyrics to Toby Keith songs! lol Link to comment Share on other sites More sharing options...
Steff Posted December 16, 2019 Author Share Posted December 16, 2019 December 2019 update: Hi friends, my mom had her CT scan last week and we received the results on December 12th. The wait was very nerve wracking for me this time. I think it was due to my uncle recently passing away from some kind of cancer - they didn't have the opportunity to find out because he was gone within 3 weeks of seeing that his liver was filled with lesions. So that was weighing heavy on our hearts when we went in to see the doc. But all went well, she continues to be NED. What makes me the most happy is that my mom has decided to stop saying that she has lung cancer and now calls herself a lung cancer survivor! When she told her sister this, I teared up, it is wonderful to hear her say this after her 2.5 year battle with this recurrence. Her next scan will be in 6 months this time. My mom continues to LIVE. Yes she has lasting side effects from treatment, yes she has had to slow down, but now more than ever she is LIVING her life to the fullest. She gets to bring my dad home from the adult family home a few times a week so they can spend quality time together (and so he can eat decent food, he says). During the days she is not with my dad, she has been spending time with wonderful ladies who are constantly on the go, attending hockey games and other social events. She is also now urging my aunt to get out and have fun after my uncle's death. And of course, she is crafting...doing all of the she loves. She is looking forward to the future without trepidation and focuses on having FUN! We attended a Kenny G concert in our home town, which was surprisingly phenomenal and I have bought tickets for her and I to go to the Margaritaville musical coming next month (shh, don't tell her it's her Christmas present!). We are making lots of wonderful memories. Why do I share this with you? Because I want to show you that there is life after a lung cancer diagnosis, and even ongoing treatment. Yes, my mom's life looks different now, lots has changed, not just with her health. But she continues to do the things she loves and has made new friends along the way. For those who are feeling hopeless, I want to share that there is HOPE. I felt hopeless too, but it all turned out okay. Take Care, Steff Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted December 16, 2019 Share Posted December 16, 2019 The best update!!!! Link to comment Share on other sites More sharing options...
Barb1260 Posted December 16, 2019 Share Posted December 16, 2019 Thanks Steff. I went for a CT today and needed this to calm me down. Your Mom is an amazing lady and an inspiration. Link to comment Share on other sites More sharing options...
Rower Michelle Posted December 16, 2019 Share Posted December 16, 2019 Keep on rocking in the free world! Best wishes as you go off to find the lost shaker of salt! Such great news Steph!! Hang tough Barb- think about soft serve, pizza and The Boss. It cures everything!! Hope the scan results continue to be positive... no more itis!!! Link to comment Share on other sites More sharing options...
BridgetO Posted December 16, 2019 Share Posted December 16, 2019 I'm so glad to hear your mom is doing well. Sounds like you are, too. Link to comment Share on other sites More sharing options...
Opal Posted December 17, 2019 Share Posted December 17, 2019 Steff, Thank you for sharing your mother's story. It's not the typical doom and gloom. It is a story of HOPE. Great to read people ARE surviving LC these days. It does gives us HOPE! Link to comment Share on other sites More sharing options...
Tom Galli Posted December 17, 2019 Share Posted December 17, 2019 Steff, There are two possible outcomes from lung cancer treatment. Your mom is demonstrating what one should do given one outcome: life extension. She is enjoying a survivor's life! Stay the course. Tom Link to comment Share on other sites More sharing options...
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