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Holdonhope

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Posts posted by Holdonhope

    Dad's Stage IV NSCLC (updates)

    in MEMBER UPDATES

    Posted

    Some updates, recent scans showed possible progression with  ramucirumab and docetaxel. Our oncologist suggested starting a clinical trial. It’s a phase one modified IL2. We were all looking forward to starting however during trial screening there were new brain lesions :( 18 very small ones. I am devastated. Waiting to here back from the oncologist if my dad is still eligible for the trial

    Dad's Stage IV NSCLC (updates)

    in MEMBER UPDATES

    Posted

    Thank you for Rower for the info, unfortunately there is no carT trials around where I live and my dad does not want to travel far. My dad had docetaxel and cyramza  as second line at the large cancer center. Initially it was planned to be given every 3 weeks but the oncologist changed it to docetaxel weekly on the day of chemo. I am not sure if this is standard procedure. Anyone heard of getting chemo weekly for lung cancer? It seems really tough and toxic.

    Dad's Stage IV NSCLC (updates)

    in MEMBER UPDATES

    Posted

    So spoke to a few oncologists. I have been trying to get my dad into a clinical trial, namely a trial in TIL therapy, since recently it was shown to work really well with melanoma. I almost got my dad enrolled but the company abruptly closed the trial :/. We are moving treatment to a large institutional cancer center with more access to trial. For now they told us the treatment will be docetaxel and cyramza every 3 weeks. I feel like options are running out :( trying to find a silver lining and hoping that this regimen will allow my dad to find a good clinical trial in the future.

    Dad's Stage IV NSCLC (updates)

    in MEMBER UPDATES

    Posted

    Scans look good. Man tumor in the anterior mediastinum unchanged in size ~2cm. Pleural effusion is gone. My dad started double dose of keytruda last week. He will get it every 6 weeks. He is feeling pretty short of breath. His pulse ox remains above 92. Could this be from the keytruda. He will see the pulmonologist on weds. Anyone has any experience on this?

    Dad's Stage IV NSCLC (updates)

    in MEMBER UPDATES

    Posted

    4th round of chemo and immunotherapy done. Scans done as well. The main tumor shrank by 50%, the little nodules in the opposite lung disappeared and the pleural effusion is halved in size. It seems most likely chemo is working. My fear is when chemo stops after 2 more cycles then it will be just immunotherapy. My dads Pdl-1 levels and TMB is low. But I am grateful for these victories for now

    Elderly mom with RA just diagnosed with stage 4 NSLC

    in NSCLC GROUP

    Posted

    Hi my dad was diagnosed in July with the same presentation. Malignant pleural effusion with Mets to spine. The malignant pleural effusion was difficult to control. He had 4 thoracentesis. He eventually had a pleurodesis and has been doing well since. He doesn’t have targetable mutations so he is on chemo and immunotherapy. Everyone treatment course is different. My advice for caregivers would be try to be on top of things as much as possible and seek second opinions if you can.

    Dad's Stage IV NSCLC (updates)

    in MEMBER UPDATES

    Posted

    Some updates, dad completed his 3rd round of chemo last week. He is doing better, now able to walk >10 blocks, really doesn't get short of breath anymore and his oxygen is always around 96%. He is just weak from the chemo. He also gained about 5 lbs. I took him to a large cancer institution (MSK) for a second opinion and said that they would not do anything differently than our current oncologist. Going for a PET CT and brain MRI this Thursday. I am dreading it :(

    Dad's Stage IV NSCLC (updates)

    in MEMBER UPDATES

    Posted

    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. 

    Dad's Stage IV NSCLC (updates)

    in MEMBER UPDATES

    Posted

    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?

    Dad's Stage IV NSCLC (updates)

    in MEMBER UPDATES

    Posted

    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?

    Dad's Stage IV NSCLC (updates)

    in MEMBER UPDATES

    Posted

    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.

    Dad's Stage IV NSCLC (updates)

    in MEMBER UPDATES

    Posted

    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. 

    Dad's Stage IV NSCLC (updates)

    in MEMBER UPDATES

    Posted

    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 :(

    Introduction

    in INTRODUCE YOURSELF!

    Posted

    I know how you feel. Waiting is the hardest part. My dad was diagnosed with stage in a week ago and we are still waiting for the genetics markers. The way my dad has been coping is trying to get as healthy as possible before any Treatment starts. We spend our time more  Preciously these days.

    Dad's Stage IV NSCLC (updates)

    in MEMBER UPDATES

    Posted

    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. 

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