NucksCelts Posted July 9, 2012 Share Posted July 9, 2012 Hi everyone, my name is Kurt, and I am from BC, Canada, and I am 20 years old. My dad has recently been diagnosed with stage 4 lung cancer. It is also in his lymph nodes, and his spine. I don't know where to being really, but I'm just going to type. Basically, back in late January, early February, my dad became ill. He was coughing a lot, and had all the pneumonia signs. He went to the doctor where he was sent home with a sinus infection. His cough became so bad he was puking phlegm out of his lungs. He went back to doctor, they said it was the sinus draining, then he went back again, said he had bronchial pneumonia, then back again, he had full on pneumonia. He was not getting better, and was getting frustrated. He was ordered to stay in bed for one week. He did that, and ended up not being able to breathe, and had chest pains. He had a major heart attack in 2000, and knew how it felt, so he went to the hospital. That was in mid march. After checking him out they discovered he had fluid around his heart, so they rushed him to Critical care. They did all their testing after draining nearly 3 litres of blood from the pericardial sac, and tested it. It came back with non-small cell carcinoma. That was on April 9th. (please forgive me for any wrong medical terms, completely new to this). They did all they could at that hospital, and sent him home still ill. At that point he had been in bed for 13 days, plus the week at home and was quite weak. He was on oxygen, and we had a unit set up at home. My dad was walking a little bit, but was mostly sitting all day. After that my dad was home for about three days, then he felt he couldn't breathe again, and went to the hospital. They treated him for pneumonia, but with little luck. He was there for about four days when he checked himself out because the staff was terrible, the patients in his room were making him depressed, and he no longer wanted to live. He came home after that and was pretty much sitting around still, very weak, very ill. Non stop coughing, spitting up so much phlegm it was unbelievable. Puking, the whole nine yards, terrible to watch. Soon after that my dad was sent to our local cancer clinic, where we found out he had Unknown Primary cancer. The doctor said in my dads condition he would normally not treat, which would give him months, but because of his age (53) and me being young and all, the doctor said he would try everything. He said if treatment worked, he could have a year or more. A week after that he had his first round of chemo, and because of having no location of the cancer, other than the blood around the heart, they treated him with 5 hours of paclitaxel, and 30 minutes Carboplatin. Within 20 minutes of the paclitaxel, his cough and puking stopped, and to this day about 2-3 months later, he still has MINIMAL coughing. He came home after that and did quite well. Was feeling better, no cough, no phlegm, good appetite, just some bad joint and muscle pain. 3 days into the chemo he called me down from his room at about 9pm, this was 3-4 weeks ago now, and told me he could not breathe. His oxygen was maxed at 5Litres. I called an ambulance and he ended up being rushed to hospital in an advanced life support ambulance. I stayed at the hospital that night and he was put on a bypass breathing machine, because his o2 level was less than 80% on 100% oxygen with mask. We stayed the night in ER trauma, and eventually he was moved to the High Aucity Unit. He spent a few days in there, and then on the surgical ward where he was just being treated for breathing, pain, and general stuff. He was made stable, oxygen levels were brought right up and he was doing fine. He was put into the oncology ward, and was looking alright, except the cough came back a little bit, but a lot of phlegm. The oncologist came in on a friday, the friday before fathers day, and told us that my dad was beating the cancer, and everything was going good, and he should have a lot more time. Sunday came, we had a great fathers day at hospital, fish and chips, and lots of gifts. Monday came around and they did a scan, and discovered the cancer had rapidly spread, so fast in one month is was the equivalence to a normal persons spread in 3 months, and that it was in his lungs, airways, lymph nodes, and spine. That was a sad day, but my dad being the most positive person in the world said that's fine, we know where it is now, and we're going to keep fighting. Tuesday morning I went to work and got the phone call from the hospital that my dad was not good, and family had to come immediately because he might not make it. When they checked his vitals in the morning they found his heart rate was at 194. They tried a medicine to lower it, but that only got it to 184. by the time i got there he was being rushed to ICU, where i watched them shock his heart twice to restart it (which was a terrible experience will explain at bottom)*, that did not work, and the cardiologist said there was nothing else that could be done. The oncologist came in and said the cancer was now attacking the heart, and with his heart rate that high they could not treat, told the family to come in to say goodbye, and set him up to go into palliative care. He was put in Cardiac care unit, and given heart slowing drip. After about 7 hours his heart rate was shooting all over the place, and after an hour of that dropped to a steady 87, and has been there ever since. He stayed in CCU for about a week, until a bed was available back in oncology. He was given a lung cancer specialist, since they were able to diagnose him with proper cancer. He looked at charts, and scans, and said they were not taken at proper times, and far enough apart, and said he wanted to try another round of chemo, except switch paclitaxel dosage with the carboplatin. My dad was slowly improving, except when they shocked his heart they pulled a muscle in his neck, and a nurse ended up jarring it, being completely unprofessional. That mixed with the spine cancer put him in so much pain he was crying, so they upped his pain killers so high that he was super super loopy. Soon he was moved to oncology, and started a second round of chemo very soon. That was Wednesday June 27. Everything went good, and the next day he was up, his breathing was so good, he had so much energy... He couldn't sit up, or go from bed to wheelchair without having to stop for 20 mins to catch breath, now he was walking, doing everything without losing breath. He ended up pretty grumpy after a few days. about 5 days ago his white cells dropped, and he was put in isolation and was doing fine. a few days ago he became very tired, and had pretty much slept for 3 days straight now, and his breathing is very raspy. I have not been able to see him for three days, due to me being sick, and him having no immune system. This is where I am now. It is a very hard, sad, confusing time. I know u all know the feeling, but i am so new to this is hurts all the time. I just worry... On top of this, my grandmother (my dads mom) passed away last weeking, and i am dealing with mental/drug issues with my brother. This feels like too much for me sometimes, i don't know. Thank you so much for reading, feel free to reply with any advice or anything. This is all for now, my wrist's, and brain hurts, im sure i left a lot out, ask ANYTHING, im not sensitive. **When my dad had his heart shocked in ICU they had a student nurse class of about 15 people there at the time. They filled the whole room with giggling nurses while i cried. They were giggling, joking, saying this is so cool. One student said "I want to do it, I've never seen this before!" and they let her do it. It was such a hard hard day. Ugh... Quote Link to comment Share on other sites More sharing options...
CraiginPA Posted July 9, 2012 Share Posted July 9, 2012 Kurt (nuckscelts), I'm sorry this is happening to him. Can you be more specific about what kind of lung cancer it is? At one point you say its Cancer of Unknown Primary (which would mean they don't know if it's really originated from the lung), and at another you said it is a type from the Non-Small Cell Lung Cancer (NSCLC) category, and you also described fast progression that sounded more like small cell rebounding after initially responding well to chemo. So can you be more specific? Is it adenocarcinoma, or squamous cell, or large cell, or small cell, or something else? If it really is a type from the NSCLC category, what tests have been done to determine it's driving mutation and what were the results? E.g., EGFR, and maybe ALK, ROS1, and KRAS for some specific types. Best hopes, Craig in PA Quote Link to comment Share on other sites More sharing options...
eric byrne Posted July 9, 2012 Share Posted July 9, 2012 Hi Kurt, Welcome to LCSC,thank you for the time and effort you have spent in writing such a detailed description of your Fathers experience going through a pretty tough time as his Doctors it seems to me, dithered in finding robust measures to treat his medical problems.Phew,it was pretty exhausting for me just to read your account,never mind what your Father had to go through.I do hope that by now,his condition is now stabilised,and he is feeling much more comfortable now. Your description of the giggling trainees incident,to me was utterly unacceptable,particularly in your presence,and would have prompted me to write a letter of complaint to the appropriate health board. Please pass on to your Father my best wishes for a speedy recovery,he is blessed in having such a son as you in his corner to support him,you are a young man but dont let medical staff try to take advantage of that,the least you can expect,is medical staff to treat you and your father with professional support and respect. Quote Link to comment Share on other sites More sharing options...
NucksCelts Posted July 9, 2012 Author Share Posted July 9, 2012 Hi i am very sorry for the confusion. The beginning of the post is supposed to describe the beginning of the journey to now. Originally he was diagnosed with unknown primary. then after he began the first round of chemo they did more testing and discovered it was lung cancer which had spread. here in canada we do the cancer thing different. Hospitals get a percentage of tax money to run, and cancer clinics are a complete different thing. They do the testing. So anyways, at this stage we know its stage four lung cancer, mets to the spine and lymph nodes. Also in both lungs. I believe the doctor said it was Non small cell. They said the rate at which it had spread was like nothing they had ever seen. But the lung cancer specialist said the scans were done at improper times. Sorry, im getting confused typing this lol. I hope that clears that up. They don't really explain the process, and what is happening, they just treat. Especially in my dads case because he was SO ill. Quote Link to comment Share on other sites More sharing options...
NucksCelts Posted July 9, 2012 Author Share Posted July 9, 2012 Hi Kurt, Welcome to LCSC,thank you for the time and effort you have spent in writing such a detailed description of your Fathers experience going through a pretty tough time as his Doctors it seems to me, dithered in finding robust measures to treat his medical problems.Phew,it was pretty exhausting for me just to read your account,never mind what your Father had to go through.I do hope that by now,his condition is now stabilised,and he is feeling much more comfortable now. Your description of the giggling trainees incident,to me was utterly unacceptable,particularly in your presence,and would have prompted me to write a letter of complaint to the appropriate health board. Please pass on to your Father my best wishes for a speedy recovery,he is blessed in having such a son as you in his corner to support him,you are a young man but dont let medical staff try to take advantage of that,the least you can expect,is medical staff to treat you and your father with professional support and respect. I thought about complaining, but between 40 hours of work a week, and driving to and from hospitals and what not, I just moved on. My dad is stable. Onc came around today and said the cancer part is doing really well, but his immune is way down, and they think he has pneumonia. So they are starting antibiotics. I am still fighting bronchitis and have not been able to be there, which really hurts. Quote Link to comment Share on other sites More sharing options...
CraiginPA Posted July 10, 2012 Share Posted July 10, 2012 Kurt (NucksCelts), NSCLC (non-small cell lung cancer) is a pretty broad category. If you have clearance to hear his medical info, if you call your oncologist's office any nurse there can probably tell you which specific type it is. (If they know its a NSCLC they'd know which specific type or at least would have narrowed it down to a couple.) NSCLC is worth testing for its driving mutation. It should at least be tested for an EGFR mutation since Tarceva usually (not always) works for that. Depending on the type, ALK and others might be worth testing. Any nurse in your oncologist's office can probably tell you over the phone which "mutation" (molecular rearrangement) tests were done and can probably repeat to you any results. (KRAS isn't so useful, but others might be.) Best hopes, Quote Link to comment Share on other sites More sharing options...
NucksCelts Posted July 25, 2012 Author Share Posted July 25, 2012 I just wanted to let everyone know i lost my father to the battle of lung cancer on July, 17, 2012. This is the hardest thing i could imagine. Quote Link to comment Share on other sites More sharing options...
CraiginPA Posted July 25, 2012 Share Posted July 25, 2012 I'm sorry to hear that, Kurt (NucksCelts). It sounds like his time had come far earlier than anyone expected. I imagine that might be especially hard on you and the rest of his family, not giving you all enough time to adjust to the prognosis. Though he wasn't able to stay longer, at least he no longer has to struggle against this disease. Now it's time for you and the rest of his family to heal from the ordeal and adapt to his absence. Best hopes, Craig Quote Link to comment Share on other sites More sharing options...
curlysue50 Posted July 25, 2012 Share Posted July 25, 2012 Kurt, so sorry for your loss. Lung cancer is a disease that is discovered late and is often so advanced that it can not be treated effectively. I am also stage IV and was very sick before I was diagnosed. I was able to find treatment and am still here almost one year later. Many others are not so fortunate and I am so sorry your father was one of these victims. My thoughts and prayers are with you and your family. Sincerely, Susan Quote Link to comment Share on other sites More sharing options...
dianew Posted July 26, 2012 Share Posted July 26, 2012 I just wanted to tell you how sorry I am about the loss of your father. My thoughts are with you and your family. Quote Link to comment Share on other sites More sharing options...
shineladysue Posted July 27, 2012 Share Posted July 27, 2012 Kurt, I am so very sorry for your loss. My thoughts and prayers are with you and your family as you go through these difficult days. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
NucksCelts Posted August 31, 2012 Author Share Posted August 31, 2012 Thanks for all the kind words everybody, It is over a month later, and it has been a roller coaster. I could go on forever but i am too mentally exhausted... A major part of me died when my father did. You are all such brave people. I honor that. Quote Link to comment Share on other sites More sharing options...
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