tpmaudio Posted December 7, 2006 Share Posted December 7, 2006 My father was diagnosed with Non-Small Cell Lung cancer a few weeks ago. It is in fairly advanced stage (Stage 4). However, I am just amazed at how quickly the symptons came on and his health went south. 3 months ago, he was running 2.5 miles everyday (which he has done for over 30 years). The he got what he thought was a sinus infection. A week later it moved to his chest. A week later he developed a really bas cough and went to the doctor. He was given antibiotics anddiagnosed with Pneumonia. After 10 days of that...with condistions getting worse, I took him to the ER. Withing 2 hours, he was diagnosed with lung cancer. Since then he has lost all energy, always coughing, not sleeping, struggling to eat, cannot breath very well, and the list goes on. We are at a well known cancer center now and just begun treatment last week. He is on a clinical trial (combining chemo with Avastin and one otehr drug). He seems to be continually getting worse and the family is very scared and confused. Is this normal? does it get worse before it gets better? I understand that it is not curable at this point. Hoever I am concerned with qualit of life. He is miserable. He apparently has a great deal of fluid that is bulding up around the lung and the doctors seem a little confused about what to do. He is not in a state that we could take him for a second opinion, so that is out. The fluid was there when diagnosed but started build rapidly after first chemo treatment. Could this be a side effect of chemo? we have yet to get answers from the doctors. Just today, he was lying on his side, his throat closed up and he passed out. My mother found him a minute later and was able to sit him up to here he could breath. It just all came on so fast. The family has had the conversations together and with him and we are ready to fight this thing...but we feel like we cannot even get to that stage yet. It seems like 1 step forward and 3 steps back. I want to get on the phone with the doctors and demand info and ...what I feel...better attention. However, I am concerned I migh be over-reacting. Maybe this is normal and they are not concerned. I also need these doctors on out side. I am mainly venting here and I appreciate anyone who has taken the time to read this. We all want my father to be able to live again, even if that is for a shorter amount of time than was the original plan. Any feedback, insight, or support would be greatly appreciated. We feel very lost in this entire process and cannot seem to find the what to fight first or how. Quote Link to comment Share on other sites More sharing options...
beat it Posted December 7, 2006 Share Posted December 7, 2006 Welcome! We will all tell you how sorry we are your here, but yet we are all glad too! This is a good place to learn, vent and gain support. My mother in law has stage 4 too and we are newer to the site (4 months) but have learned alot. Seems to me every person is different. Every story is too so its hard to find common ground at times. I appears your situation is on a excellerated pace. But PLEASE do not give up hope. Try to learn as much as possible in terms of all treatment options and talk to survivors, they can lend you so much knowledge. LOADS of people have had different outcomes than they where originally told, DONT give up HOPE!!! Keep posting, asking and venting here. Many will help you and you will be added in many prayers! Beat it!! Quote Link to comment Share on other sites More sharing options...
Nick C Posted December 7, 2006 Share Posted December 7, 2006 I am so sorry for this diagnosis. It's never too late to get a second opinion, as a different doc may have a thought on a treatment that may help him feel better that the other doc hasn't thought of. Doctors are human, they don't all know or think of the same things. I pray for comfort for your dad and the rest of the family. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted December 7, 2006 Share Posted December 7, 2006 Hello and welcome. I have been here awhile and I must say from the posts I have read from the newcommers, your Dad's case is atypical. If you are not getting sufficient attention from his doctors, it is time to get your Dad to a hospital where he can be evaluated and treated. Breathlessness to the point of passing out requires emergency attention. Cindi o'h Quote Link to comment Share on other sites More sharing options...
Don M Posted December 7, 2006 Share Posted December 7, 2006 Hi: your dad needs to be treated for the fluid around his lungs. I don't understand why the doctors would not know for sure what to abou it. If he can't breathe right, it has to be drained. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted December 7, 2006 Share Posted December 7, 2006 I agree, DonM. Cindi o'h Quote Link to comment Share on other sites More sharing options...
tpmaudio Posted December 7, 2006 Author Share Posted December 7, 2006 Thank you all very much for the quick posts. This is a wonderful site and you are all such great people to dedicate your time to help others. This is how I feel as well. I feel al ittle like nothing much is eing done. I feel as f the doctors have forggten about it as soon as we walk out the door. During the visits, I feel like we ask the correct and important questions, but feel as if we are getting blown off. I would like to see another doctor but I am not sure how to go about it. This group has the best reputation in the area and is affiliaed with a major cancer center. My father does not have the strenght to travel right now, nor do we have the time to get in with someone like Sloan Kettering, etc. When we called them to setup a second opinion, it could not be scheduled until early next year. Would not consult and we had to travel to NY to even see a doctor. We are a little lost and unsure what to do next. We know how we feel, but options seem very limited. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted December 7, 2006 Share Posted December 7, 2006 In my opinion, it is not too soon to take him to the Emergency Room/Department. Cindi o'h Quote Link to comment Share on other sites More sharing options...
Don Wood Posted December 7, 2006 Share Posted December 7, 2006 Every patient needs an advocate, including your dad, to fight through the medical system. I am glad you are there for your dad. Keep it up. Don Quote Link to comment Share on other sites More sharing options...
Treebywater Posted December 7, 2006 Share Posted December 7, 2006 Don said it so well--I'm glad you are there to advocate with him. If your gut is telling you he isn't getting the attention he needs then start kicking up a fuss. Unfortunately, all to often in these situations is IS the squeaky wheel that gets the grease. So... Squeak! Let your doctor know what a dramatic turn this is for your Dad, and don't be afraid to continue to speak up. Praying for you as you navigate through all of this. Quote Link to comment Share on other sites More sharing options...
Tracey Huguley Posted December 7, 2006 Share Posted December 7, 2006 Welcome.... Yes...never give up hope... I'm the Queen of more opinions...read my post below... My husband was dx with Stage IV nsclc 3 months ago and told he had one yr to 18 months to live. He was given this dx from 2 different Dr's. He does not have lung cancer. We found out he has lung disease. So yes...talk to as many people as possibe. This support group is super. Many experts here. You and your family are in my prayers... Love, Tracey Huguley Quote Link to comment Share on other sites More sharing options...
tpmaudio Posted December 7, 2006 Author Share Posted December 7, 2006 We have a doctors appointment this afternoon, so hopefully we can ask the right questions, express our concerns, and move in a positive direction. Again, I appreciate everyones response. Quote Link to comment Share on other sites More sharing options...
tpmaudio Posted December 7, 2006 Author Share Posted December 7, 2006 Am I correct in thinking that the doctors most important priority should be the really bad symptoms (i.e. productive cough, breathing, etc) and not necessarily the cancer. Or is that not the normal approach? My father is constantly gagging up mucous when he coughs. Anyone seen this. Somewhat normal in advanced lung cancer? Quote Link to comment Share on other sites More sharing options...
Don Wood Posted December 7, 2006 Share Posted December 7, 2006 My wife's oncologist always gave top priority to pain and other problems she was having. before the treatment for cancer. He was great. I agree with you this should be priority with the doctor. Don Quote Link to comment Share on other sites More sharing options...
dchurchi Posted December 7, 2006 Share Posted December 7, 2006 I would write down any questions you have (I always forgot something I wanted to ask so I started writing down my questions). Do not let the Dr. brush you off, If you do not understand the answer request he/she answer so you do understand (I do this many times.) This is the scariest time, when your loved one is newly dignosed with this beast. we are here for you, keep asking questions. Many prayers for your family. Please keep us posted. Quote Link to comment Share on other sites More sharing options...
melindasue37 Posted December 7, 2006 Share Posted December 7, 2006 Welcome!! I'm sure you are feeling the overwhelming feelings that all of us do when we first find out our loved ones have lung cancer. But, you should be very proud of yourself. You have found a great place for both support and answers. You know your father better than the doctors. And there is so much to be said for that "gut instinct." Go with it and continue to ask questions. Do what you feel is right regarding the BEST care possible for your Dad. Praying for you and your family. Quote Link to comment Share on other sites More sharing options...
recce101 Posted December 7, 2006 Share Posted December 7, 2006 And remember the doctors, nurses, and staff are ultimately working for you, not the other way around. Without patients they couldn't be in business, even as a nonprofit entity. Don't let the initials, titles, and layers of authority intimidate you. If you're not satisfied after today's meeting -- or even if you are satisfied to a degree but still skeptical -- ask to see the chief of staff or equivalent. You can be polite, calm, soft-spoken, and very convincing at the same time! My very best wishes and Aloha. Quote Link to comment Share on other sites More sharing options...
ernrol Posted December 7, 2006 Share Posted December 7, 2006 Welcome, I had stage IV lung cancer with a pleural effusion. I was told there was no cure and they could not operate or use radiation. I have been cancer free since November 2005. They only drained enough fluid from me to get a biopsy, about a cup. This was enough to relieve the pain that I had. I don’t know how long your dad has been on chemo, but it may take several weeks before results are seen. Stop thinking there is no cure. If I had believed some doctors I would not be here now. I still would consider a second opinion as soon as your dad is able. You might find that if you share some of the stories on this web site with him, he will find new strength to make a trip for a second opinion. Anything I can do let me know. Keep us posted. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
ernrol Posted December 7, 2006 Share Posted December 7, 2006 Here is a list of places to get a second opinion. Go to the web site below and it will give you a list of places that give second opinions by state, and how to contact them. There are some in North and South Carolina. http://www.blochcancer.org/articles/xtrnew.asp Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
Welthy Posted December 8, 2006 Share Posted December 8, 2006 Hoping that you were able to get some answers and most of all get some relief for you Dad's symptoms. Let us know. Thinking of you, Welthy Quote Link to comment Share on other sites More sharing options...
Flowergirlie Posted December 8, 2006 Share Posted December 8, 2006 Welcome! I am sorry you have to be here but very glad you found this site for support and answers since you do have to be here. I think it is the greatest gift to anyone who is going through this horrible disease! The one thing that was of the utmost importance in our experience was that I read EVERYTHING there was to know about my husband's specific diagnosis, so that no matter what the doctor said, I would understand and be able to reciprocate with any unanswered questions I might have had. When your father is not feeling OK, it is OK for you to take him to the ER or call the doctor/oncologist and make an appointment or talk to them and ask them questions, because you are concerned and do not know if it is normal. At the start of treatment for my husband, I thought everything was a normal side effect until some of the symptoms got so bad that I had to rush him in to the ER only to find out he would have died if I had not taken him in (they were not side effects of chemo), so it is very important to watch any unusual activity. The beginning is so hard because your family is in shock and it is so hard to swallow a cancer diagnosis and treatment is very intense and suddenly life as you know it has changed. But, hang in there, we are all here for you whenever you need! I wish you and your father the best! Quote Link to comment Share on other sites More sharing options...
Nick C Posted December 8, 2006 Share Posted December 8, 2006 Our doc encouraged second opinions for us to feel we comfortable. SO ask the doctor, if we want to consult someone for a second opinion, just for our peace of mind, who would you recommend? He may be able to point you to someone who is not far. Best of luck with all of this. Quote Link to comment Share on other sites More sharing options...
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