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Shane18

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  1. Thank you all for your replies. Boomer, it sounds similar to my father, I am sorry to hear. He tapered off the steroids but that made things worse so they have put the him back on the steroids. He now has a breathing machine that he doesnt wear all the time but it helps when he absolutely needs it to catch his breath. He continues to have pain move around his les and his hips. We suspect its damage caused by the radiation. FWIW to others, Mayo clinic told him he shouldnt have had radiaiton to begin with and should have had chemo and then immuno. Thanks again. Shane.
  2. Hi. First I want to thank everyone who has helped with my questions, they responses have been very helpful in helping with my father's symptoms. My dad has stage iv lung cancer that is now in his kidney and his liver. He underwent chemo and radiation and is now on keytruda. He is PD-L1>50% positive which seems to be helping the immuno, his cancer is now 'stable'. But my father has had severe difficulty breathing. It originally started because he had inflammation in his lungs. They put him on steroids to help with the inflammation in his lungs and is now tapering off the steroids. The inflammation landed him in the ER but now seems to be clearing up. I am curious if anyone has had severe shortness of breath? We finally convinced the doctor to prescribe an oxygen machine which seems to be helping. But without it, he can barely walk to the the bathroom or take a shower standing up. He is also experiencing his legs being extremely sore. We took him in to check for blood clots and he is clear of blood clots. It was originally in his calf and now in his thighs. Any others feel these affects from the immuno or steroids'? Does it get better with time? just trying to help my dad out. He's a strong man and he's on his 4th immuno treatment and tries to remain active but its getting hard for him. Its really tough to watch a guy who was riding and racing horses 6 months ago to where he is now. Thanks, so much! Shane
  3. Tom, thank you again for taking the time to respond. A question on the ice cream... We have taken my father off of any sugar in his diet so we have been reluctant to give him any ice cream. I am a strong believer in sugar weakening the immune system and having it feed disease and viruses. But I am also not a doctor. I am curious your thoughts on this? Thanks, Shane
  4. Hi, my father is undergoing chemo and radiation treatment. The radiation is daily on his chest (left lobe, station 4 and 7 lymphnodes). He also just started his second cycle of chemo (cisplatin). He is having difficulty swallowing both food and liquids. The pain seems to be in the middle of his chest under his sternum. Even a glass of water is hard for him to get down. Any tips on helping this issue? Also, he has some uncomfortable taste in his mouth too that he cant seem to get rid of as well if there are any tips for that, but the swallowing is the main concern. Thank you! Shane
  5. Hi, my father has been diagnosed with Stage III (A/B) squamous NSCLC with PD-L1 expression >50%. Surgery is apparently not an option at this point. We just heard word from the radiologist that they are prescribing radiation and chemo first before administering any immuno drug (Pembrolizumab or Atezoliazumab) even though both drugs have been approved by Health Canada as a first line treatment and as combination therapy with chemo and/or radiation. Is there any reason (besides cost consideration by the government) that the initial treatment would also not include the immuno therapy right off the bat? We were in high spirits when the biomarkers came back with PDL1 >50% but we are kind of baffled why we would not also be receiving the immuno therapy as well. The response we are getting from the doctors was that they were "following the guidelines of Health Canada". Is there anything more we can be doing in this situation? Thanks, Shane
  6. Thank you, Tom. There is no perfect system, but feeling like we are at the DMV with a cancer diagnosis it not the solution the US wants. Thanks for your thoughts again.
  7. Hi, We received results from my father's biopsy performed on Feb 24th. He has stage IIIA NSCLC squamous cell lung cancer in station 7 and 11 lymphnodes with an upper lobe tumor which is relatively small. Station 7 is metastatic. His biomarker testing came back with positive testing for PD-L1 >50% expression (good news!) but negative for the EGRF mutation. We are in Canada so the process has been slow in the universal health care system. I believe they are recommending combination therapy with radiation, chemo, and the immuno drug pembrolizumab. We are schedule for his first consultations with the radiologist (April 9th) and the oncologist (April 15th), another long agonizing wait before any treatment. We received a call today that the in-person consultations will now be telephonic due to the corona virus. My further concern is that his treatment start may or will get delayed because of the covid environment we live in as well. So my questions are- can the chemo and immuno be administered at home? And secondly, if we continue to get stuck in the queue in Canada, can we at least administer the immuno drugs through a private nurse if we can get a prescription for the drug independently from a doctor in the US or his Canadian health team? Just trying to make sure we are thinking of and exploring all options if anyone has any recommendations or thoughts. Thanks so much in advance, Shane
  8. also sounds like figuring out how how to supplement the Canadian treatment (chemo/radiation/surgery) with other treatment (targeted/immunotherapy) in the US would make the economics much less burdensome. Hopefully I can find someone who has experience taking such a path.
  9. Thank you all very much with providing your generous thoughts and care, and openly sharing your own experiences. I can't thank you enough and will follow up on every suggestion you all have made. Sincerely, thank you. Shane
  10. Hi, we just received the PET scan results and it turns out my father potentially has stage III A or B lung cancer. Next is the biospy (EBUS) which is schedule a few weeks away. He is based in Canada and hence, subject to the universal healthcare system as well, which can cause long delays in appointments and treatments. I am his son and I live in New York City, and I am exploring options in the USA for expedited diagnosis and also treatment. I dont think in Canada we have the same access to dual or combination treatment and immunotherapy as is offered in the USA. I have put in a request for an appointment to Sloan Kettering to hopefully get an expedited biospy and also to discuss treatment options. I am reaching out for any thoughts from the forum in general, I am just trying to do everything I can to increase his chances. Also, does anyone have experience with paying for care out of pocket with this stage of cancer? I am just trying to understand is the potential costs $100k, $500k, $1m?? I really dont know and I am sure its wildly different case by case but trying to set mine and my family's expectations. Thanks for ANY additional thoughts. Thanks so much! Shane
  11. My father has been diagnosed with having a nodule 1cm by 1cm by 2.5cm withe suspicion that is has spread to the lymph nodes. This is from the CT scan that was done. They have now scheduled him in for a full body PET scan. I thought the primary doctor referred us to a specialist for a biopsy but now they are doing a PET scan first. Is this the normal approach? Should we also be asking to schedule a biospy? My father lives in canada and the system can be slow in getting appointments scheduled because of universal health care. I am concerned we will wait for the PET scan and then have to wait for the Biopsy as well, instead of trying to get them both done as soon as possible. Thanks! Shane
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