Stephanie Ellen Posted May 26, 2021 Share Posted May 26, 2021 Hi Everyone, I am a 34 year old RN whose mother age 54 was diagnosed this past week with Stage 4a adenocarcinoma. Large area on the right with spread to the left showing a few small infiltrates. She has been a smoker for approx 35 years and quit a few months ago prior to feeling sick. Her only other medical problem is Hashimoto's hypothyroid. She is currently admitted to the hospital due to low oxygen sats. She's maintaining her o2 on 12L but we are hoping to wean her down to 5L so that we can go home and seek treatment at Roswell Park in Buffalo, NY where I live. She completed her first round of chemo on Saturday. This was Carboplatin and Alimta. They are considering keytruda with the next round. We are awaiting genetic marker results. I am wondering if anyone with a similar experience can offer any insight with moving forward or if there are additional things we should be doing. Thank you all for being here. ❤️ Stephanie Link to comment Share on other sites More sharing options...
LexieCat Posted May 26, 2021 Share Posted May 26, 2021 Hi, Stephanie, and welcome. Pembrolizumab IS Keytruda. Did you mean maybe Pemetrexed (Alimta) that she's on now (with the Carboplatin)? Has she had a PET-CT and brain MRI? Those are two of the other tests that are pretty standard at the time of early diagnosis/staging. If she has had those tests, is there any sign of mets anywhere else? Glad you found us--this is a great place for information and support. Link to comment Share on other sites More sharing options...
Rower Michelle Posted May 26, 2021 Share Posted May 26, 2021 Hi Stephanie, I’m sorry to learn of your Mom’s diagnosis. Lexie is correct & Keytruda should not be administered until the comprehensive biomarker testing comes in. While it is unlikely there will be a targeted mutation the treatment options have expanded significantly. When the testing does come in with Stage IV diagnosis, it is important to obtain a second opinion with a thoracic oncologist to evaluate if there are clinical trials which could be more effective than the standard of care. There have been more scientific advances in the last three years than in the last fifty so it’s almost impossible for a general medical oncologist to stay abreast of the best treatment options. Keep us posted. Michelle Link to comment Share on other sites More sharing options...
LouT Posted May 27, 2021 Share Posted May 27, 2021 Stephanie, As you can see, you are already getting some great input and food for thought from the super people here. I can't give any experiential input on chemo, but I wanted to welcome you and to encourage you to ask questions. As an RN (my Mom, Sister and one of my daughters are as well) you are already familiar with the benefit of second, and even third, opinions and like my friends here I encourage you to get those as well. Let us know where we can be of help. In the meantime, there is a great article called "10 Steps to Surviving Lung Cancer: by a Survivor" and you can find that here. It is filled with excellent information and cautions. Lou Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted May 27, 2021 Share Posted May 27, 2021 Hi Stephanie. I'm sorry to hear of your mother's diagnosis. We actually have a virtual conference coming up next month just for caregivers. Here is the link to get your complimentary tickets to the event. https://lungevity.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=971 If you have any questions, please let me know. Link to comment Share on other sites More sharing options...
Marcia Fluhr Posted May 27, 2021 Share Posted May 27, 2021 I have not smoked in 41 years. I am athletic and take good care of myself. Yet, here I was diagnosed with stage IV adenocarcinoma. I have the good bio marker PD-L1 postive. I have a drain for the fluid that results from my right lung. I am on Tabrecta. The only side effect is edema in my arms and legs which I am trying to manage with compression stockings. Hope this information helps your mom. Prayers and good luck. Link to comment Share on other sites More sharing options...
Stephanie Ellen Posted May 28, 2021 Author Share Posted May 28, 2021 16 hours ago, LouT said: Stephanie, As you can see, you are already getting some great input and food for thought from the super people here. I can't give any experiential input on chemo, but I wanted to welcome you and to encourage you to ask questions. As an RN (my Mom, Sister and one of my daughters are as well) you are already familiar with the benefit of second, and even third, opinions and like my friends here I encourage you to get those as well. Let us know where we can be of help. In the meantime, there is a great article called "10 Steps to Surviving Lung Cancer: by a Survivor" and you can find that here. It is filled with excellent information and cautions. Lou Hi Lou, Thank you. I just read it. I think my mom is still in shock over the diagnosis. I appreciate the welcome words. Stephanie Link to comment Share on other sites More sharing options...
Stephanie Ellen Posted May 28, 2021 Author Share Posted May 28, 2021 On 5/26/2021 at 10:23 AM, LexieCat said: Hi, Stephanie, and welcome. Pembrolizumab IS Keytruda. Did you mean maybe Pemetrexed (Alimta) that she's on now (with the Carboplatin)? Has she had a PET-CT and brain MRI? Those are two of the other tests that are pretty standard at the time of early diagnosis/staging. If she has had those tests, is there any sign of mets anywhere else? Glad you found us--this is a great place for information and support. Yes, thank you Lexie. They did admin Alimta and are holding off on Keytruda. She's had a positive turn around with her oxygen requirements the last 2 days and I'm hoping she can be discharged soon so that we can travel to Buffalo. She had had an MRI of the brain and CT of abdomen/pelvis which were negative for mets so far. Because of her high oxygen demands, she hasn't had the opportunity for a PET scan as they aren't available at the hospital shes at. I am so glad I found this group. This is really a tough situation. I love her so much. Thank you for welcoming me. Link to comment Share on other sites More sharing options...
Stephanie Ellen Posted May 28, 2021 Author Share Posted May 28, 2021 12 hours ago, Marcia Fluhr said: I have not smoked in 41 years. I am athletic and take good care of myself. Yet, here I was diagnosed with stage IV adenocarcinoma. I have the good bio marker PD-L1 postive. I have a drain for the fluid that results from my right lung. I am on Tabrecta. The only side effect is edema in my arms and legs which I am trying to manage with compression stockings. Hope this information helps your mom. Prayers and good luck. I'm eager to get her biomarker results back. They said around 2 weeks. I'm glad that you are managing well. Thanks for the info. Link to comment Share on other sites More sharing options...
Stephanie Ellen Posted May 28, 2021 Author Share Posted May 28, 2021 On 5/26/2021 at 10:32 AM, Rower Michelle said: Hi Stephanie, I’m sorry to learn of your Mom’s diagnosis. Lexie is correct & Keytruda should not be administered until the comprehensive biomarker testing comes in. While it is unlikely there will be a targeted mutation the treatment options have expanded significantly. When the testing does come in with Stage IV diagnosis, it is important to obtain a second opinion with a thoracic oncologist to evaluate if there are clinical trials which could be more effective than the standard of care. There have been more scientific advances in the last three years than in the last fifty so it’s almost impossible for a general medical oncologist to stay abreast of the best treatment options. Keep us posted. Michelle Hi! We have our 2nd opinion with a thoracic oncologist on Thursday in Buffalo. I'm hoping for the best and trying to stay positive for my mom. Thank you! Link to comment Share on other sites More sharing options...
Stephanie Ellen Posted June 4, 2021 Author Share Posted June 4, 2021 Update. Mom and i met with the Roswell Park oncologist yesterday after having a PET scan. She said that the cancer is improved vs her last ct and we will be moving forward with continuing alimta and carboplatin for her 2nd round. The doc sent additional bloodwork for more thorough testing. So far her markers are negative. The onc mentioned adding keytruda along with a second immunotherapy. Does anyone have experience with this? Thanks for listening. It's really comforting to have this forum. Stephanie Link to comment Share on other sites More sharing options...
LexieCat Posted June 4, 2021 Share Posted June 4, 2021 I'm not sure I've heard of adding two immunotherapy drugs (outside of a clinical trial), but I could be wrong. I'm certainly no expert. Can you find out the name of the second immunotherapy drug? Did the oncologist have the results of the PET scan? Any signs of any other mets? Glad you were able to get her back to NY with you! Link to comment Share on other sites More sharing options...
Stephanie Ellen Posted June 4, 2021 Author Share Posted June 4, 2021 48 minutes ago, LexieCat said: I'm not sure I've heard of adding two immunotherapy drugs (outside of a clinical trial), but I could be wrong. I'm certainly no expert. Can you find out the name of the second immunotherapy drug? Did the oncologist have the results of the PET scan? Any signs of any other mets? Glad you were able to get her back to NY with you! Thanks Lexie. The PET scan did not show other mets thankfully. I do not know the name of the other immunotherapy agent. The doc say that it's similar to an off brand Keytruda made from another company that usually shows improvement in the long term, usually around the 3 year post to mark. She says that side effects can be rough but is hopeful that mom can tolerate them because she is fairly healthy and relatively young otherwise. I will try to get the exact name. It wouldn't be started until cycle 3 after all of the markers are back. The onc said that there were a few that they didnt send out in Denver so we r waiting for those. Link to comment Share on other sites More sharing options...
LexieCat Posted June 4, 2021 Share Posted June 4, 2021 No other mets is great news! Keep us posted--really glad to hear she's having a good response so far. Link to comment Share on other sites More sharing options...
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