Feedback on surgery of right mid-lobe and subcarinal lymph nods.

Hi Rita and Charles, I feel your frustration. First of all, I had lung and brain mets 2 years ago and I am still around. My Oncologist worked together with the radiologist and neural surgeon to come up with a plan. There decision was my best chance was to get into the up coming trial of Immunotherapy now called checkmate 67 from Bristol Myer Squibb. The criteria to get into the trial at that time was no active brain mets, so they decided that the three small mets in my brain should be treated with stereotatic radio surgery (SRS). At the Ottawa general they have a cyberknife machine and I feel that the cyberknife surgery save my life. I wouldn't want to give you advice about having the lung surgery or not. I would try to get into the expanded access trial of ipi and Nivolumab. If you don't respond to the immunotherapy then you could always get the lung surgery. I would want to have the results from the Mri on the brain before going forward. Is your husband having any symptoms from his lung mets? Is the lung met changing quickly or is it growing slowly? These factors should be discussed with the Oncologist. Wishing you the best!!! Ed 

Hi Rita and Charles, I feel your frustration. First of all, I had lung and brain mets 2 years ago and I am still around. My Oncologist worked together with the radiologist and neural surgeon to come up with a plan. There decision was my best chance was to get into the up coming trial of Immunotherapy now called checkmate 67 from Bristol Myer Squibb. The criteria to get into the trial at that time was no active brain mets, so they decided that the three small mets in my brain should be treated with stereotatic radio surgery (SRS). At the Ottawa general they have a cyberknife machine and I feel that the cyberknife surgery save my life. I wouldn't want to give you advice about having the lung surgery or not. I would try to get into the expanded access trial of ipi and Nivolumab. If you don't respond to the immunotherapy then you could always get the lung surgery. I would want to have the results from the Mri on the brain before going forward. Is your husband having any symptoms from his lung mets? Is the lung met changing quickly or is it growing slowly? These factors should be discussed with the Oncologist. Wishing you the best!!! Ed 

Hi Rita and Charles, I feel your frustration. First of all, I had lung and brain mets 2 years ago and I am still around. My Oncologist worked together with the radiologist and neural surgeon to come up with a plan. There decision was my best chance was to get into the up coming trial of Immunotherapy now called checkmate 67 from Bristol Myer Squibb. The criteria to get into the trial at that time was no active brain mets, so they decided that the three small mets in my brain should be treated with stereotatic radio surgery (SRS). At the Ottawa general they have a cyberknife machine and I feel that the cyberknife surgery save my life. I wouldn't want to give you advice about having the lung surgery or not. I would try to get into the expanded access trial of ipi and Nivolumab. If you don't respond to the immunotherapy then you could always get the lung surgery. I would want to have the results from the Mri on the brain before going forward. Is your husband having any symptoms from his lung mets? Is the lung met changing quickly or is it growing slowly? These factors should be discussed with the Oncologist. Wishing you the best!!! Ed 

Get a second and third opinion. The doctors should have had all the scans (i.e. brain scans) when they knew it was stage IV and the PET scan lit up.  

You should not be receiving back and forth messages this long… And your husband should not be receiving calls about care or appointment because he can't remember conversations. – I don't know if this is stress related, his personality OR a symptom of brain tumors.  – Whatever it is, put a stop to this tomorrow. 

To get someone else to be the primary contact for all communication about your husbands care and appointments  he may need to sign a release to have you and/or another family member be able to communicate with doctors and scheduling about his care. (Preferably a family member who will know exactly what is going on with all appointments, is fairly intelligent and interested in this, has an inquisitive mind, can ask good questions, "deal" with stress, and who can be preferably at appointments)  You should also make sure release covers everything i.e. followup scheduling, radiology appointments, all doctors appointments doctors notes, CD images from radiology, basically everything past and everything for the future.  

For appointments you can get a mini recorder and ask the doctors if you can record the conversations you have with them for another family member or yourself, which can help you with "remembering" all the information and fir an absent family member.  You might also find out if the doctors have good WiFi in the patient rooms. If so, you can get a iPad or other device with Skype on it and a family member can be "present" for the appointment and the family member can see the doctor and vice versa and communicate during the appointments if they can't be there in person.

In my experience the oncologists did not present a written plan, but we explored multiple options: Gamma Knife Radiation (aka SRS) and Yervoy, due to brain mets, and BRAF positive gene combination of trametinib (Mekinist) and dabrafenib (Tafinlar). My Mom ,after 3 discussions in a 1 week time period, decided to go with Gamma Knife Radiation and Yervoy.  Excellent choice for her.  

My Moms doctors at USC, in Los Angeles, have been excellent and they have discussions between themselves when she has appointments if there is anything of note and they discuss treatment options and plans, which is documented between them if anything is found or recommended.  They have had to do this on a number of occasions such as when my Mom:

      1) did so well on the SRS and Yervoy that that she was able to start driving sooner than most,

      2) they discussed future options on the off chance she needed other care

      3) they discovered bleeding in a treated tumor (treated by a facility in Beverly Hills,) and,

      4) a recent scan showed 1 treated tumor (treated by a facility in Beverly Hills not at USC) may be a reoccurrence of cancer – everything else is gone, much much smaller or brain tumors are stable…

Point is that all of her doctors communicate between each other and they brought my Mom's recent brain MRI scan to 2 different tumor boards to talk about what they saw and would recommend based on what they saw. The talked among themselves, other colleagues and brought in a neurosurgeon, at the second tumor board, to look at everything…  They may not provided you with a written plan but may and should communicate what they are doing behind the scenes.   

Good Luck!

Get a second and third opinion. The doctors should have had all the scans (i.e. brain scans) when they knew it was stage IV and the PET scan lit up.  

You should not be receiving back and forth messages this long… And your husband should not be receiving calls about care or appointment because he can't remember conversations. – I don't know if this is stress related, his personality OR a symptom of brain tumors.  – Whatever it is, put a stop to this tomorrow. 

To get someone else to be the primary contact for all communication about your husbands care and appointments  he may need to sign a release to have you and/or another family member be able to communicate with doctors and scheduling about his care. (Preferably a family member who will know exactly what is going on with all appointments, is fairly intelligent and interested in this, has an inquisitive mind, can ask good questions, "deal" with stress, and who can be preferably at appointments)  You should also make sure release covers everything i.e. followup scheduling, radiology appointments, all doctors appointments doctors notes, CD images from radiology, basically everything past and everything for the future.  

For appointments you can get a mini recorder and ask the doctors if you can record the conversations you have with them for another family member or yourself, which can help you with "remembering" all the information and fir an absent family member.  You might also find out if the doctors have good WiFi in the patient rooms. If so, you can get a iPad or other device with Skype on it and a family member can be "present" for the appointment and the family member can see the doctor and vice versa and communicate during the appointments if they can't be there in person.

In my experience the oncologists did not present a written plan, but we explored multiple options: Gamma Knife Radiation (aka SRS) and Yervoy, due to brain mets, and BRAF positive gene combination of trametinib (Mekinist) and dabrafenib (Tafinlar). My Mom ,after 3 discussions in a 1 week time period, decided to go with Gamma Knife Radiation and Yervoy.  Excellent choice for her.  

My Moms doctors at USC, in Los Angeles, have been excellent and they have discussions between themselves when she has appointments if there is anything of note and they discuss treatment options and plans, which is documented between them if anything is found or recommended.  They have had to do this on a number of occasions such as when my Mom:

      1) did so well on the SRS and Yervoy that that she was able to start driving sooner than most,

      2) they discussed future options on the off chance she needed other care

      3) they discovered bleeding in a treated tumor (treated by a facility in Beverly Hills,) and,

      4) a recent scan showed 1 treated tumor (treated by a facility in Beverly Hills not at USC) may be a reoccurrence of cancer – everything else is gone, much much smaller or brain tumors are stable…

Point is that all of her doctors communicate between each other and they brought my Mom's recent brain MRI scan to 2 different tumor boards to talk about what they saw and would recommend based on what they saw. The talked among themselves, other colleagues and brought in a neurosurgeon, at the second tumor board, to look at everything…  They may not provided you with a written plan but may and should communicate what they are doing behind the scenes.   

Good Luck!

Get a second and third opinion. The doctors should have had all the scans (i.e. brain scans) when they knew it was stage IV and the PET scan lit up.  

You should not be receiving back and forth messages this long… And your husband should not be receiving calls about care or appointment because he can't remember conversations. – I don't know if this is stress related, his personality OR a symptom of brain tumors.  – Whatever it is, put a stop to this tomorrow. 

To get someone else to be the primary contact for all communication about your husbands care and appointments  he may need to sign a release to have you and/or another family member be able to communicate with doctors and scheduling about his care. (Preferably a family member who will know exactly what is going on with all appointments, is fairly intelligent and interested in this, has an inquisitive mind, can ask good questions, "deal" with stress, and who can be preferably at appointments)  You should also make sure release covers everything i.e. followup scheduling, radiology appointments, all doctors appointments doctors notes, CD images from radiology, basically everything past and everything for the future.  

For appointments you can get a mini recorder and ask the doctors if you can record the conversations you have with them for another family member or yourself, which can help you with "remembering" all the information and fir an absent family member.  You might also find out if the doctors have good WiFi in the patient rooms. If so, you can get a iPad or other device with Skype on it and a family member can be "present" for the appointment and the family member can see the doctor and vice versa and communicate during the appointments if they can't be there in person.

In my experience the oncologists did not present a written plan, but we explored multiple options: Gamma Knife Radiation (aka SRS) and Yervoy, due to brain mets, and BRAF positive gene combination of trametinib (Mekinist) and dabrafenib (Tafinlar). My Mom ,after 3 discussions in a 1 week time period, decided to go with Gamma Knife Radiation and Yervoy.  Excellent choice for her.  

My Moms doctors at USC, in Los Angeles, have been excellent and they have discussions between themselves when she has appointments if there is anything of note and they discuss treatment options and plans, which is documented between them if anything is found or recommended.  They have had to do this on a number of occasions such as when my Mom:

      1) did so well on the SRS and Yervoy that that she was able to start driving sooner than most,

      2) they discussed future options on the off chance she needed other care

      3) they discovered bleeding in a treated tumor (treated by a facility in Beverly Hills,) and,

      4) a recent scan showed 1 treated tumor (treated by a facility in Beverly Hills not at USC) may be a reoccurrence of cancer – everything else is gone, much much smaller or brain tumors are stable…

Point is that all of her doctors communicate between each other and they brought my Mom's recent brain MRI scan to 2 different tumor boards to talk about what they saw and would recommend based on what they saw. The talked among themselves, other colleagues and brought in a neurosurgeon, at the second tumor board, to look at everything…  They may not provided you with a written plan but may and should communicate what they are doing behind the scenes.   

Good Luck!