Guidance for lung cancer ordeal

jln
jln Member Posts: 7
in Lung Cancer #1
My lovely wife came down with stage III lung cancer which was removed along with her lower lung lobe. After getting positive feedback from the oncologist a couple of months ago and starting to get our lives back, I had to take my lovely wife to the ER after she fell and observing handwriting difficulties, fearing she may have had a stroke. They found that she now has a mass in her brain and liver. She is undergoing brain radiation and will be undertaking chemo in a couple of weeks. I am taking her to Duke University next week to get a second opinion and to see if we can get her into a clinical or experimental program. She will be forced to quit her job and I may be forced to retire early to care for her after all my leave runs out and from the subsequent burnout. This is wrecking out whole lives.

Has anyone out there had any experience with this type of cancer? Can you advise what was done to treat it? Has anyone ever had their lung cancer metastsis treated at Duke University? We have an appointment with Dr Ready next week. Does anyone know if CRIZOTINIB would work in this case?

Comments

  • dennycee
    dennycee Member Posts: 857 Member
    #2
    Welcome to the CSN website
    Hi jln,
    So sorry for the circumstances that bring you here.

    (as I was saying before I hit post and lost everything)

    In order for us to help you better there is more information that we need. First, what type of lung cancer does she have. Because you indicated her original dx was stage 3, I am going to go on the assumption that she has non-small cell lung cancer. There are several different types. Does she have adenocarcinoma (mine), large cell, squamous cell or bronchioloalveolar carcinoma? When her cancer moved to her brain and liver she became stage 4, you probably know that but it must be acknowledged.

    Second, when they tested the biopsy sample did they also test for mutations? Crizotinib (Xalkori) is used for patients who have either the ALK or the ROS1, both are common for patients who never smoked, ALK is also common in people who rarely smoked. in clinical trials Crizotinib had a terrific return rate. 89% of the patients in the study had a 30% or better shrinkage of the tumor. Xalkori is just one of the "targeted treatments" that have had good success depending on the mutation. In fact these two mutations (ALK & ROS1) account for less than 6% on nsclc.

    Duke University Hospital has a National Comprehensive Cancer Network designation (NCCN). There are only about 20 hospitals in the country that achieved that designation. Standards are extremely high. Dr. Ready is on staff there and an associate professor at the med school so his CV has to meet those standards.

    Lets address the HOPE issue. LC is no longer a death sentence. There is a man on inspire.com who goes by the name stage4survivor, he was dx 13+ years ago when he brain mets from an undiagnosed nsclc. In the meantime he has survived a second round of brain mets. He is not alone, there are 5, 10, 15 and 20 year survivors out there.

    I have given you a lot to think about so let me just say that I look forward to hearing more from you. Please let us know about the trip to Duke, the info about the cancer and the type of chemo agents they will give her. Does not have to be all at once.
    My best to you both,
    Dennycee
  • jln
    jln Member Posts: 7
    #3
    dennycee said:

    Welcome to the CSN website
    Hi jln,
    So sorry for the circumstances that bring you here.

    (as I was saying before I hit post and lost everything)

    In order for us to help you better there is more information that we need. First, what type of lung cancer does she have. Because you indicated her original dx was stage 3, I am going to go on the assumption that she has non-small cell lung cancer. There are several different types. Does she have adenocarcinoma (mine), large cell, squamous cell or bronchioloalveolar carcinoma? When her cancer moved to her brain and liver she became stage 4, you probably know that but it must be acknowledged.

    Second, when they tested the biopsy sample did they also test for mutations? Crizotinib (Xalkori) is used for patients who have either the ALK or the ROS1, both are common for patients who never smoked, ALK is also common in people who rarely smoked. in clinical trials Crizotinib had a terrific return rate. 89% of the patients in the study had a 30% or better shrinkage of the tumor. Xalkori is just one of the "targeted treatments" that have had good success depending on the mutation. In fact these two mutations (ALK & ROS1) account for less than 6% on nsclc.

    Duke University Hospital has a National Comprehensive Cancer Network designation (NCCN). There are only about 20 hospitals in the country that achieved that designation. Standards are extremely high. Dr. Ready is on staff there and an associate professor at the med school so his CV has to meet those standards.

    Lets address the HOPE issue. LC is no longer a death sentence. There is a man on inspire.com who goes by the name stage4survivor, he was dx 13+ years ago when he brain mets from an undiagnosed nsclc. In the meantime he has survived a second round of brain mets. He is not alone, there are 5, 10, 15 and 20 year survivors out there.

    I have given you a lot to think about so let me just say that I look forward to hearing more from you. Please let us know about the trip to Duke, the info about the cancer and the type of chemo agents they will give her. Does not have to be all at once.
    My best to you both,
    Dennycee

    Guidance for lung cancer ordeal - reply to Dennycee
    Many thanks for your reply and encouragement.

    I am not sure what type she has but I will check into it further. I am still reeling from the shock of it all and haven't taken in as much as I should. A neurologist forewarned us that she may have to have brain shunts to offset the brain swelling. She has one more day of brain radiation so maybe hope is working in our favor as she has not had any headaches. She gets a couple of weeks off before starting chemo for the liver. In between that time, we will go to Duke next week.

    I just learned that a nearby university, Hampton University in Hampton VA, has started a proton therapy treatment center. Do you know anything about this? I assume Duke and Dr Ready would be in a positon to recommend for or against this type of treatment.

    Last night, we had a retired pastor from Heartland Hospice, Richard Dingles, come visit us. He gave us alot of insight into positive thinking and healing which lifted both of us greatly. I can well see where my negativity is not an asset in this situation. This ordeal has been a learning curve for me.

    Many thanks again for your feedback and we will let you know what transpires at Duke.

    (jln) john
  • dennycee
    dennycee Member Posts: 857 Member
    #4
    jln said:

    Guidance for lung cancer ordeal - reply to Dennycee
    Many thanks for your reply and encouragement.

    I am not sure what type she has but I will check into it further. I am still reeling from the shock of it all and haven't taken in as much as I should. A neurologist forewarned us that she may have to have brain shunts to offset the brain swelling. She has one more day of brain radiation so maybe hope is working in our favor as she has not had any headaches. She gets a couple of weeks off before starting chemo for the liver. In between that time, we will go to Duke next week.

    I just learned that a nearby university, Hampton University in Hampton VA, has started a proton therapy treatment center. Do you know anything about this? I assume Duke and Dr Ready would be in a positon to recommend for or against this type of treatment.

    Last night, we had a retired pastor from Heartland Hospice, Richard Dingles, come visit us. He gave us alot of insight into positive thinking and healing which lifted both of us greatly. I can well see where my negativity is not an asset in this situation. This ordeal has been a learning curve for me.

    Many thanks again for your feedback and we will let you know what transpires at Duke.

    (jln) john

    Hi John,
    I know very little
    Hi John,
    I know very little about proton therapy but like what I have read, This is from the National Institutes of health if you have not familiarized yourself with them they are my most trusted source of info. http://www.nlm.nih.gov/medlineplus/ency/article/007281.htm

    So glad that the steroids have worked for your wife during her radiation. It is good, too, to familiarize yourself with all your options. let me recommend that you explore palliative medicine. Their pain management skills equal hospice but they allow you to seek treatment that prolongs life and you can call 911 if there is an emergency, with hospice you cannot.

    If you have access to a tape recorder take one with you to all doctor appointments. I will be thinking of you.
    Denny

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