Holdonhope Posted July 7, 2022 Share Posted July 7, 2022 My dad was diagnosed with likely NSCLC last week. My life feels like it was turned upside down. The primary tumor is believed to be under his carina (adenocarcinoma). It is automatic stage IV because he had malignant pleural effusion in his right lung. Cytology was positive for adenocarcinoma. The oncologist sent the cytology of the fluid for molecular testing, it should be back next week. They also sent a liquid biopsy (ctDNA) which should be back end of this week. I just hope that the tumor cells have a mutation that is treatable with targeted therapy. The wait is killing me. My dad already lost 8 lbs since he returned from the hospital last week. He also had reaccumulating of his pleural effusion which was removed via thoracentesis again 2 days ago. He also developed SIADH and now is on fluid restrictions. I really hope he can start therapy asap. His Brain MRI was negative, and his PET scan done yesterday shows extensive uptake above his heart and right pleural space. He has bilateral active lymph nodes in the lung, a few lymph nodes in the Abdomen, and a possible uptake in his T2 spine. The liver thankfully did not light up. The CT surgeon would like to do VATs and pleurodesis for his malignant pleural effusion. He also would like to get a biopsy while he is in the chest next week. I just hope this does not interfere with starting treatment. Lung cancer is no joke. My prayers go out to all of you fighting this. Justin1970 1 Quote Link to comment Share on other sites More sharing options...
LouT Posted July 8, 2022 Share Posted July 8, 2022 Holdonhope, So sorry to hear about your father. A LC diagnosis is always a devastating event for both the patient and loved ones. Things look pretty dark in the beginning, but can improve as a treatment plan is decided upon and implemented. Getting a needle biopsy is a good idea and may provide additional information to the liquid biopsy. I have a couple of information bits for you: "10 Steps to Surviving Lung Cancer; from a Lung Cancer Survivor" and it can be found here. Being a caregiver to a LC Patient can be a difficult task and we have an area dedicated to to. The "Caregivers Resource Center" which is on this page. Please keep us updated and ask any questions you may have. Lou Justin1970, LilyMir and Tom Galli 3 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted July 8, 2022 Share Posted July 8, 2022 So sorry to hear about your dads cancer try and stay as positive as possible take care Justin LouT, Tom Galli and Izzy 3 Quote Link to comment Share on other sites More sharing options...
Holdonhope Posted July 11, 2022 Author Share Posted July 11, 2022 The liquid biopsy is back it shows no EGFR, Alk, or ROS1 mutation :(. The most present mutation is TP278T which doesn't have a targeted drug on the market. Is there no more hope for my dad? Tom Galli and Justin1970 1 1 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted July 12, 2022 Share Posted July 12, 2022 Liquid biopsy isn't always definitive for biomarker testing because not all tumors shed DNA into the bloodstream. A tissue biopsy would be definitive though, so ask his doctor about that. The downside is that it takes a couple of weeks to get results back. Even if there is no targetable mutation, chemo, radiation and immunotherapy could all be options. So don't despair, your dad doesn't have a treatment plan yet. Justin1970, LilyMir, LouT and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted July 13, 2022 Share Posted July 13, 2022 Below are the updated ASCO guidelines for Stage IV non-squamous cell lung cancer with no driver mutations. (Courtesy of the EGFR Resisters Group.) https://ascopubs.org/doi/full/10.1200/JCO.22.00825 LouT, Tom Galli and Justin1970 3 Quote Link to comment Share on other sites More sharing options...
Holdonhope Posted July 14, 2022 Author Share Posted July 14, 2022 Thank you Judy that resource was helpful. My dad saw the oncologist today. Plan is to resend the liquid biopsy. She said she was surprised that she didn’t see and actionable mutation. We are going to start chemo and immuno next Thursday while we wait for the results. Carbo, alimta, and keytruda. My dad is going to get a vats and get tissue biopsy next Tuesday. We are still waiting for the cytology results. I never felt so helpless in my life Justin1970 and LouT 2 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted July 14, 2022 Share Posted July 14, 2022 I know how hard it is for caregivers to stand by and worry. The patient at least feels like something is being done when treatment starts. I hope your dad will get a port, it makes infusions so much easier. Your dad's journey is just starting. Waiting will become part of your lives, and it can be intolerable. He'll have a lot going on in the next few weeks, so that will be a distraction. I hope any side effects from the triplet will be manageable. LouT, Tom Galli and Justin1970 3 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted July 18, 2022 Share Posted July 18, 2022 Your dad's doctor sounds on top of it, so that's something. If it helps you feel that your dad's case is not languishing, you might think of the VATS procedure his first step in treatment. A tissue biopsy is considered the gold standard in diagnostic process. A complete treatment plan takes time to develop, especially when all the data is not in yet. I've learned that the significance of a Stage 4 classification has changed enormously in the past few years. People can live good lives for a long time. Someone in my local cancer group has been around for 16 years since his Stage 4 diagnosis! Hang in. It's easy to say, "Take it one day at a time." But that truly has been the only way I get through lung cancer. Justin1970, LouT, Holdonhope and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Holdonhope Posted July 19, 2022 Author Share Posted July 19, 2022 Thank you. My dad’s pleurodesis/biopsy was done today the good news is that it was successful. The bad news is that the malignant pleural fluid that was taken 2 weeks ago was negative for egfr and alk mutations 😞 the oncologist said it was a small sample but since the liquid biopsy and pleural fluid cytology did not show any actionable mutation probably means he doesn't have one. I am not sure about his pdl1 levels but his tumor mutational burden is low. Next step is chemo and immune therapy one he is discarged from the hospital. Tom Galli and Justin1970 1 1 Quote Link to comment Share on other sites More sharing options...
Shella677 Posted July 20, 2022 Share Posted July 20, 2022 8 hours ago, Holdonhope said: Thank you. My dad’s pleurodesis/biopsy was done today the good news is that it was successful. The bad news is that the malignant pleural fluid that was taken 2 weeks ago was negative for egfr and alk mutations 😞 the oncologist said it was a small sample but since the liquid biopsy and pleural fluid cytology did not show any actionable mutation probably means he doesn't have one. I am not sure about his pdl1 levels but his tumor mutational burden is low. Next step is chemo and immune therapy one he is discarged from the hospital. Hi! It’s possible your dad has another mutation other than Alk or EGFR. Those are the most common but there are several others. For example I have the BRAF mutation and I have been on targeted therapy pills for 15 months Judy M2, LouT, Justin1970 and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
Holdonhope Posted July 23, 2022 Author Share Posted July 23, 2022 Dad is back from the hospital after a pleurodesis. The chest tube was pulled out today. He is short of breath more easily since we got home today, but I’m hoping it’s because of the pleurodesis and he starts breathing better day by day. Chemo/immunotherapy on Tuesday. Taking it a day at a time 🤞 Justin1970, Tom Galli, Karen_L and 1 other 4 Quote Link to comment Share on other sites More sharing options...
LouT Posted July 23, 2022 Share Posted July 23, 2022 All any of us can do is to take this one day at a time so you're on the right track. My prayers for your dad's breathing to improve. Please keep us informed. Lou Tom Galli and Justin1970 2 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted July 27, 2022 Share Posted July 27, 2022 Hang in there. One day at a time is about all I can manage when it comes to this disease. Tom Galli and Justin1970 2 Quote Link to comment Share on other sites More sharing options...
Holdonhope Posted July 27, 2022 Author Share Posted July 27, 2022 Some updates, dad had a semi successful pleurodesis. The lung attached to the chest wall however there is still some loculated fluid in the mid right chest. He is breathing better after some steroids but still gets short of breath and desaturated to mid 80s when laying flat. The treatment team decided not to drain the remaining fluid as he is recovering from pleurodesis and can maintain and O2 sat above 90s while sitting and walking and we did not want to delay treatment. His repeat blood biopsy came back negative again for an actionable mutation we are still waiting for the tissue biopsy for possible missed mutations and pdl1 levels. He received alimta, carbo, and keytruda yesterday. He is feeling ok. I am hoping the ultimately chemo improves his pleural effusions and makes him feel a little more comfortable. Tom Galli and Justin1970 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted July 27, 2022 Share Posted July 27, 2022 Hi I'm glad things are a going a bit better for your dad I hope he continues to get more comfortable Take care Justin Izzy and LouT 2 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted July 28, 2022 Share Posted July 28, 2022 Holdonope, Chemo, particularly, combination chemotherapy with immunotherapy, can quickly stop pleural effusions. I'm hoping for a good outcome for your dad's treatment. Stay the course. Tom Samanthagg, LouT and Justin1970 3 Quote Link to comment Share on other sites More sharing options...
Holdonhope Posted July 29, 2022 Author Share Posted July 29, 2022 It’s been 3 days since my dad received alimta, carbo, and keytruda. The first day he did not feel anything, the second day he felt like he was hit by a truck. He is super fatigued. He is able to sleep but no matter what he does he still feels fatigued. Today is day 3 and feels the same. Thankfully his o2 saturation is hold up. Anyone has experience in this? When do symptoms start improving? Justin1970 1 Quote Link to comment Share on other sites More sharing options...
Holdonhope Posted August 1, 2022 Author Share Posted August 1, 2022 Today is day 6 after alimta, carbo, and keytruda. Chemo is rough. Thankfully dad has been peeing a lot for the last two days which seems to correlate with an improvement in his oxygen level. He is also finally able to lay flat without getting short of breath. Round 2 of chemo is in 2 weeks :(. Any tips on getting stronger prior to the next round of chemo? Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted August 1, 2022 Share Posted August 1, 2022 Holdonhope, Tips on recovering strength after chemo? Sorry, in my 18 infusions, time was the only thing that allowed improvement. My infusion schedule was a 3 week cycle. In the third week, I started to feel near normal right about the time I mounted the chair for my next bout. Chart his side effect onset and departure in hours after infusion. My side effects followed a pattern and started and stopped about the same time every cycle. Charting allowed me to figure out when I could plan things so I'd feel well enough to actually enjoy them. I'm very happy to learn the shortness of breath is waning. Stay the course. Tom Holdonhope and Justin1970 1 1 Quote Link to comment Share on other sites More sharing options...
Holdonhope Posted August 4, 2022 Author Share Posted August 4, 2022 Well the tissue biopsy is back, Pdl-1 is zero, TMB is low, no actionable mutation :(. The onc said she is surprised, my dad never smoked in his life. The report is such a letdown Justin1970 and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted August 4, 2022 Share Posted August 4, 2022 Your dad has had a rough patch but seems to be leveling out a bit. My experience with chemo-induced fatigue is that contrary to what the body seems to want, i.e., lying down, it's the opposite that has a positive effect on fatigue. I tried to do very gentle exercise and I believe it helped me. I'm sorry you feel so let down. Would it be useful to consider another opinion at this point? Justin1970, Tom Galli and LouT 3 Quote Link to comment Share on other sites More sharing options...
Holdonhope Posted August 16, 2022 Author Share Posted August 16, 2022 Thank you everyone for the advice. I booked an appointment at MSK for a second opinion. Today is round 2 of Alimta, carbo, and keytruda. He is doing better now than 2 week ago i.e. can walk 4 blocks before getting SOB instead of 1 block. He is still fearful of the nausea, so for this round the oncologist gave him dexamethasone prior to chemo. Does anyone know if steroids blunt the effects of pembrolizumab? I asked the oncologist and she doesn't think so. I asked Dr. Google and I have conflicting results. Justin1970, Tom Galli and LouT 3 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted August 17, 2022 Share Posted August 17, 2022 I don't know about the effects of dexamethasone vs. Keytruda but I did take dex at the beginning of chemo and also to relieve side effects of radiation treatments. It caused me some serious side effects and as a result I will not take steroids again. For nausea, ask for a prescription for Odandestron (Zofran), which is a dissolvable tablet to take at the first hint of nausea. It worked great for me. To counteract any constipation, some Miralax should be taken proactively. Ginger tea and candies can also help with nausea. Justin1970 and LouT 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted August 17, 2022 Share Posted August 17, 2022 Hi I'm currently back on dexamethasone steroids I have to say I'm not keen on how they make me feel, I also had tablets for nausea and they did work, I hope everything gets better soon take care Justin Izzy, Tom Galli and LouT 3 Quote Link to comment Share on other sites More sharing options...
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