Newly dx with adenocarcinoma

[lpastorello]

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

[Tom Galli]

After surgery, tumors appeared in my left (remaining) lung and chemotherapy (I received both first and second line) was the only available tool.  But, after second line failure, my oncologist learned cyber knife procedures used to treat brain tumors were being performed on a trial basis for certain types of lung cancer tumors.  That bit of knowledge and his connections to get me into that trial program saved my life. 

 

I'm a Texan and well acquainted with the reputation of MD Anderson.  I know many who were treated successfully and knew many who were not.  The advantage of a large cancer research hospital is availability of trials or experimental procedures that might make a difference.  What was (is) most important to me is the opinion of my medical oncologist.  He practices in a small but complete treatment center but is well acquainted with emerging trials and methods of treatment.  

 

Likely, your Dad's first treatments will be what is called a "standard of care."  That means all patients with the same type and stage of cancer receive the same (or nearly the same) chemotherapy routine.  The PET and MRI along with the biopsy report should yield a definitive type and stage diagnosis.  So a good question to ask his Chicago medical oncologist after scan results are revealed is what is the standard of care for my Dad's disease.  He'll likely get that standard care prescription in Chicago or MD Anderson.  If he doesn't respond to the standard of care, you might consider second line treatment at a large cancer research hospital. I failed second line also but the knowledge and intuition of my oncologist saved my life.

 

I believe the skill of my medical oncologist was the most important factor in arresting my disease.

 

Most importantly, please do not believe anyone advertising a miracle cure or significantly improved cure rates.  

 

Stay the course.

 

Tom

[lpastorello]

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

[lpastorello]

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!!!

[jbordeaux9]

My wife had a similar diagnosis. Adenocarcinoma that metastesized to her brain, Spine, Pelvis, and Liver. She received the statndard of care wich was Chemo and radiation. That was it nothing else was offered. We are in Springfield, IL and apparently her oncologist here didn't believe anything else could be done because nothing else was even offered. This was only a year and a half ago and I believe that although various new therapies and drugs are available now as well as clinical trials we were not educated enough to make an informed decision so she went with what he said. I now know that first educate yourself as much as possible. Ask the oncologist even get a second opinion elsewhere. Had I known more about the Lurie Cancer Center in Chicago She would have chosen to go there.

Since your in Chicago is that were treatment is being received? Be sure to check into clinical trials as well. Going to another clinic like Mayo would be a good idea based upon his ability to travel. After her first chemo treatment travel was more difficult. 

Please take care of yourself as well. I hope this made sense and gave you a little help trying to get a grip on the situation.

 

Jim

[lpastorello]

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.