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lpastorello

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Everything posted by lpastorello

  1. Thank you Jim for responding. How is your wife doing? I'm so sorry for anyone that has to go through this. I am so scared we won't even get him to treatment this coming Tuesday. His albumin is low and he is very weak. I just want a chance to get him there and I'm not sure if we will get it. We are at Rush. We were going for a consult to Northwestern as well but stuck with Rush because they were so wonderful from the beginning. Not that Lurie wouldn't have been great as well but there are such amazing people here and I felt the treatment would have been same. I'm scared though we lost time. He is 77 and was vigorous even after our Diana died he tried to stay healthy but then when my brother passed he quickly deteriorated. We are all close in my family so I guess when you love big, you hurt big. But I need to do what I can to save him.
  2. Negative for ALK too and it spread to bones and adrenals and more nodules in left lung other than big one in upper left lobe. There is nodule in lower right lobe as well. Starting Alimta/Carboplatin, one dose every three weeks. But we have a setback because my Dad's BP went to 70/30 so we are overnight in hospital now. I hope someone can respond with similar situation? Any hope out there for stage IV? Anyone on same treatment? Thank you!!!
  3. So we are negative for KRAS and EGFR so far and ALK is not back yet:( I think they are testing for ROS1 as well? This is going to sound stupid but lung cancer is new to us and my twin died of leukemia so I became an expert in that world. There were certain mutations you wanted and some you didn't so did we want EGFR? It seems they have a very targeted therapy for that gene mutation so does that mean our options are slimmer? They won't do radiation and I don't know why??? We get PET scan results tomorrow do maybe they know something we don't already:( I'm so scared there is little hope now? What would he get if there is no rads and targeted therapy??? Many thanks! Linda
  4. Anybody in Chicago and if so, where were you treated??
  5. Anybody in Chicago and if so, where were you treated??
  6. Can someone tell me why my Dad's team would have said these are not options for his lung cancer? He was officially given a dx of "poorly differentiated metastatic adenocarcinoma" yesterday and the mass is in his left upper lobe and is 6.5cm by 7cm and left lymph nodes are positive for malignancy. Right side of lungs and right and middle lymph nodes so far are negative for malignancy. PET scan next week along with MRI so do not know where else it could be. They think adrenals and liver from a CT. But why right off the bat is it off the table? Thank you all very much!
  7. We finally found out yesterday my dad has "metastatic poorly differentiated adenocarcinoma" in his left upper lobe of his lungs. Left side lymph nodes were positive for cancer and right side and middle were not. Not sure if that matters anyway since they think it is in other organs so I think that still puts him at stage IV? They think it is in his adrenals and liver but PET scan is Monday. MRI is Thursday next week which seems so far away again. I just lost my twin to leukemia a few years ago and my brother died this past June but I just cannot lose my father - we have to do something to try and save him. am just torn on whether we stay here in Chicago for treatment or go to Mayo or maybe MD Anderson? Will they do something different in Mayo or MD perhaps that they would not do here? Any thoughts on that? Has anybody had it in their adrenals and liver and there was still hope? Any thoughts would be gratefully appreciated! Would love to hear anybody from other larger cancer centers, and hear about what your regimen was in order to compare what they are talking about. I think my Dad wants to stay in Chicago so as not to stress my mom out too much but my mom and I want to do what is best for him. My mom has been in the hospital on and off a few times for very high blood pressure since my brother passed away:( Thank you again, Linda
  8. We finally found out yesterday my dad has "metastatic poorly differentiated adenocarcinoma" in his left upper lobe of his lungs. Left side lymph nodes were positive for cancer and right side and middle were not. Not sure if that matters anyway since they think it is in other organs so I think that still puts him at stage IV? They think it is in his adrenals and liver but PET scan is Monday. MRI is Thursday next week which seems so far away again. I just lost my twin and my brother but I will not lose my father - we have to do something to try and save him. We are all falling like dominoes:( My mom could not even come to the appointment yesterday she was so distraught - she has been hospitalized with very high blood pressure since my brother died over two months ago:( Now I am just torn on whether we stay here in Chicago for treatment or go to Mayo or maybe MD Anderson? Will they do something different in Mayo or MD perhaps that they would not do here? Any thoughts on that? Has anybody had it in their adrenals and liver and there was still hope? Any thoughts would be gratefully appreciated! Linda
  9. We finally found out yesterday my dad has "metastatic poorly differentiated adenocarcinoma" in his left upper lobe of his lungs. Left side lymph nodes were positive for cancer and right side and middle were not. Not sure if that matters anyway since they think it is in other organs so I think that still puts him at stage IV? They think it is in his adrenals and liver but PET scan is Monday. MRI is Thursday next week which seems so far away again. I just lost my twin and my brother but I will not lose my father - we have to do something to try and save him. We are all falling like dominoes:( My mom could not even come to the appointment yesterday she was so distraught - she has been hospitalized with very high blood pressure since my brother died over two months ago:( Now I am just torn on whether we stay here in Chicago for treatment or go to Mayo or maybe MD Anderson? Will they do something different in Mayo or MD perhaps that they would not do here? Any thoughts on that? Has anybody had it in their adrenals and liver and there was still hope? Any thoughts would be gratefully appreciated! Linda
  10. Congrats Tom!!! That is so hopeful! We got a blood test back today and oh my goodness not one thing was normal???! !! His WBC was sky high, platelets sky high, ......does that mean it's everywhere? It will be so hard to wait a week for results. And his kidney function #s were horrible.??? Is this normal for a solid neoplasm cancer???
  11. Thank you Katie B! We are trying decide between those two exactly and then Mayo. I would take him to MD Anderson if he agreed to it but he really wants to try and stay near home. We only know he is stage 4 but not sure why he is stage 4 when we just got biopsy done today but no results?!
  12. So the doctor who just did the mediastonoscopy said they already tested a couple of lymph nodes right after they got them out and it is indeed positive for cancer. We have not had a PET scan yet. I'm waiting in the lounge while he is in recovery for two hours. With lymph node involvement in the mediastinum is there any hope?? Is it automatically stage 4 because it's in the lymph nodes?? We have to wait a week to find out what type of cancer. Is there any hope at all for stage 4??? Thank you all so much .
  13. We go for mediastonoscopy and bronchoscopy tomorrow morning here in Chicago. I'm so scared for my Dad right now because everything that could go wrong when my twin sister had leukemia, did go wrong:( my brother died of a drug overdose due to doctor's negligence, after minor surgery and we were told they do thousands a week so we don't have a bit of good luck in this family:( I also was so hoping to hear from people in Chicago so I can find recommendations on a place for treatment. we chose to stick to the first place for biopsy that we consulted with because he is getting so weak and we just need some answers asap. He is so worried about burying my brother by my twin, he cannot focus on any doctors or decisions and since it is all on my shoulders, I feel responsible for picking the best place for him. My mom just cries all day on him so that is not helping him and she makes him take all the calls and visitors for people learning about my brother and he should not be dealing with that at all but I work full time and cannot be there just yet until they approve my FMLA at work but I also have kids to take care of. I feel so selfish fur even ranting on because my dad is the priority. Does anybody on these boards have referral to the best place in Chicago??? Thank you again to everyone.
  14. Can you share where you go and why you chose them? We are torn between a few places and have not even had the bronchoscopy done yet - my Dad was told only that he was stage 4 lung cancer. We are torn between going to Mayo Clinic in MN or staying here in Chicago. Does anybody have experience with Rush, Northwestern or U of Chicago??? I would be so grateful for advice or opinions!!! Thank you because finding this kind of support has been a saving grace.
  15. Thank you so much for responding. We need to just start with getting more tests at this point. I was so surprised they just blurted to him it was stage 4 just from a CT scan? Can anybody tell me where they were treated? We are in the Chicago but yes, we will start with his doc! Thank you so much for helping because we are so lost.
  16. We just found out my Dad has stage 4 lung cancer. He had a mass on his chest x-ray and then a CT showed mass on lung, liver and adrenal gland. What is odd is they showed the CT to my parents and told him he is stage 4, but have not done biopsy, bronchoscopy, etc. Has anybody else been told they are stage 4 with only CT? I guess I am hoping this is a nightmare and maybe a bronchoscopy will say otherwise. My identical twin sister died almost 7 years ago at 31 years old, from leukemia leaving behind a beautiful little girl with no mother, and then my brother died at 42 years old, in June 11 after minor hernia surgery. He was overdosed in his IV on Dilaudid. My poor parents and I have not even buried him yet next to my sister and we just got the news this week that my Dad has cancer??? I don't know how one family can endure so much pain but I cannot lose my Dad too. They are survivors of Nazi occupation and escaped many years later during the Russian Revolution from Czechoslovakia. They are strong and have endured so much. He is 77 years old and has chronic kidney disease from Type 2 diabetes but has always managed it well. He has not needed any meds or insulin for the diabetes because he was so healthy. Can he get treatment being type 2 diabetic? He was a smoker and had quit when he was about 40 years old. He had quit cigarettes when I was very young, and then had smoked cigars and pipes but went cold turkey when he was 40 with all of it. I was so hoping his risk would have gone down but I guess with all of he heartbreak it left him susceptible? I do not know where to go for answers. He is at my brother's house in FL right now helping to take care of his business with my mom. I had to come back to take care of my daughter and my twin's daughter and take FMLA from work. We live in Chicago though and they would go down there just be with my brother for a few months here and there. Do they go to Moffitt in Tampa? Or Mayo Clinic in MN, Northwestern, U of Chicago? Can somebody guide us on where to get started? This doctor who diagnosed him was so rude because when they found out that my parents were suing for medical malpractice over my brother within the same hospital system (not sure how the doctor found out) so they refused to treat him but I want him at a better place anyway. I am so broken and would be grateful for any advice or any words of wisdom. Is there anybody out there stage 4 that has beat it??? Hopeless in Chicago, Linda
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