Stage IV Adenocarcinoma of the Lung

ShakaHoo505
ShakaHoo505 Member Posts: 3
edited January 2018 in Lung Cancer #1

Hello all,

I do no want to give a whole lot of specifics as I am a medical profesisonal (no Oncology is not my speciality) with a loved one who was recently diagnosed with Stage IV Adenocarcinoma.  This particular individual is a male approximately 60 years of age, never a smoker, an avid runner, and eats an extremely healthy diet.  Cancer was found to be throughout both lung fields, as well as positive lymph nodes in the abdomen/pelvis.  Unfortunately based on the preliminary blood/pathology results it seems as though immunotherapy is not an option, and instead will be getting "tradiational chemotherapy cocktail."  

It has really been devastating news for our entire family, and it just feels so helpless.  Yes I am aware of the statistics, and the seemingly very poor prognosis.  From what I gather the average prognosis is 3-6 months.  Given that this individual has been so healthy, is relatively young, and has no other medical conditions I assume it is possible to beat the odds (by how much I have no idea).

 

I guess I am looking for a couple of things...

1)  Anyone with the diagnosis of Stage IV adenocarcinoma that is not a candidate for immunotherapy who has done well with traditional chemo?  I would love to hear your story/experience.

2)  Family members who have been in my our shoes... any advice on coping?  Any advice on how we can help in any way possible?

 

I am just so crushed/devstated over everything.  It is difficult to shut off my medical brain, and look at it from a family member perspective.  

 

Thanks All for any information.

Comments

  • KidHorn
    KidHorn Member Posts: 1
    edited January 2018 #2
    Sorry to hear about it.

    Sorry to hear about it.

    My wife has stage 4 adenocarcinoma. It's not widespread. Only confirmed in her sacrum after having a lobectomy. She's EGFR positive and has been taking Iressa, then tagrisso, so her experience will be much different. My wife never smoked, ate well, and exercised. Sometimes you get cancer even when you do everything right.

    Fortunately for us, the treatment she's been getting has worked well. It hasn't cured her, but it's kept things under control.

    Her oncologist has been trying to stay away from traditional chemo since it doesn't work well and can have bad side effects. Hate to be the bearer of bad news, but better to know than not know.

    There's always a chance of being cured and maybe a new effective treatment will become available.

  • mogens
    mogens Member Posts: 1
    edited February 2018 #3
    In the same boat - Can we get in touch privately ??

    Hello ShakaHoo505

    1.       I am an early retired CPA and former equity partner (64) from Denmark and despite my education I should start from scratch when I should try to understand just a little about cancer 

    2.       My wife is 65 - non smoker – and operated in February 2017 (½ of left lung removed and declared cured and no additional (radiation / chemo) treatment offered, as it was not considered necessary).  

    3.       Ultimo October 2017 - because of pains in her left thigh/leg - she contacted the hospital and now the lung cancer (NSCLC – adenokarcinom -PD-L1 > 1%) had spread out to the bones (widespread mixed osteolytic and sclerosed bone metastases throughout the skeleton –stage IV) – the cancer in the bone was the same type as the cancer in the lung. There has not been detected/demonstrated ALK,ROS1,RET or EGFR.  

    4.       We were told, that the survival period if no treatment took place probably would be less than 1 year and with treatment 1-2 years. She has now - palliative - received 10 x rays against the pelvis and 3 x chemo intravenously (Carboplatin og Vinorelbine) combined with chemo in tablet form after day 8 of the intravenously chemo. (2-line treatment offered is probably immunotherapy – but I am not sure and I now don´t know which kind). We felt we had no choice but to start with the proposed treatment! Conclusion from Hospital after 2 x kemo was as follows: Unchanged following follow-up on left side. Continued widespread bone metastases with increasing sclerosis - interpreted as a healing process. No new emerging disease manifestations

    1.        What do I know (or think I know) about cancer (after 6 weeks study -offen 12-14 hours a day) – nearly nothing because I am not “educated in this branch“ – BUT I believe to know 3 facts: 1) we carry / have all cancer cells and cancer only break out when the immune system is deficient/has failed and 2) Cancer is treated most effectively when combination therapy is used with multiple-angle attack and 3) Radiation and chemotherapy are also harmful to health and can only be used to a limited extent=> to me it is logical to try to stimulate/cure the immune system!

     

    1.       I have - as mentioned - during the last 6 weeks been reading books, articles on the internet, seen vidoes etc. (also about alternative medicine/cures) - When I thought I found some positive things I started to find some negative things on the subject  - during my “study” I found a “lot of crap/salespromotion” about alternative medicine (at least in my opinion). We have also found some things that I found realiistic to help my wife. I have also written to researchers / doctors around the world when I have read about experiments that seemed relevant to us. I will during this weekend (I hope) riaise some proposals/questions to our doctors. If you want to get in contact with me (I think we might both benefit from a contact) please write to me with the following subject/headline: "CANCER CONTACT - In the same boat??????"

     

     

    I 

    W

     

    the

  • ShakaHoo505
    ShakaHoo505 Member Posts: 3
    edited February 2018 #4
    Update

    Thanks for the two above responses.

    Sadly, my uncle was recently given a prognosis of 7-10 days to live.  It is amazing how fast this disease can consume someone.  Chemotherapy does not seem to be effective as stated above, and as my research/reading showed.  I guess if you have this form of cancer you pray you are a candidate for immunotherapy, unfortunately the prognosis is not much better in that instance.  

  • Katmar
    Katmar Member Posts: 55
    #5
    Shaka,

    Shaka,

    So sorry about your uncle. He is one of the unfortunate folks for whom the cancer is very aggressive. So many new therapies out there, but they don't work on anyone. Wishing you and your family peace and comfort. Take care.

  • dansarah
    dansarah Member Posts: 1
    edited February 2018 #6
    mogens said:

    In the same boat - Can we get in touch privately ??

    Hello ShakaHoo505

    1.       I am an early retired CPA and former equity partner (64) from Denmark and despite my education I should start from scratch when I should try to understand just a little about cancer 

    2.       My wife is 65 - non smoker – and operated in February 2017 (½ of left lung removed and declared cured and no additional (radiation / chemo) treatment offered, as it was not considered necessary).  

    3.       Ultimo October 2017 - because of pains in her left thigh/leg - she contacted the hospital and now the lung cancer (NSCLC – adenokarcinom -PD-L1 > 1%) had spread out to the bones (widespread mixed osteolytic and sclerosed bone metastases throughout the skeleton –stage IV) – the cancer in the bone was the same type as the cancer in the lung. There has not been detected/demonstrated ALK,ROS1,RET or EGFR.  

    4.       We were told, that the survival period if no treatment took place probably would be less than 1 year and with treatment 1-2 years. She has now - palliative - received 10 x rays against the pelvis and 3 x chemo intravenously (Carboplatin og Vinorelbine) combined with chemo in tablet form after day 8 of the intravenously chemo. (2-line treatment offered is probably immunotherapy – but I am not sure and I now don´t know which kind). We felt we had no choice but to start with the proposed treatment! Conclusion from Hospital after 2 x kemo was as follows: Unchanged following follow-up on left side. Continued widespread bone metastases with increasing sclerosis - interpreted as a healing process. No new emerging disease manifestations

    1.        What do I know (or think I know) about cancer (after 6 weeks study -offen 12-14 hours a day) – nearly nothing because I am not “educated in this branch“ – BUT I believe to know 3 facts: 1) we carry / have all cancer cells and cancer only break out when the immune system is deficient/has failed and 2) Cancer is treated most effectively when combination therapy is used with multiple-angle attack and 3) Radiation and chemotherapy are also harmful to health and can only be used to a limited extent=> to me it is logical to try to stimulate/cure the immune system!

     

    1.       I have - as mentioned - during the last 6 weeks been reading books, articles on the internet, seen vidoes etc. (also about alternative medicine/cures) - When I thought I found some positive things I started to find some negative things on the subject  - during my “study” I found a “lot of crap/salespromotion” about alternative medicine (at least in my opinion). We have also found some things that I found realiistic to help my wife. I have also written to researchers / doctors around the world when I have read about experiments that seemed relevant to us. I will during this weekend (I hope) riaise some proposals/questions to our doctors. If you want to get in contact with me (I think we might both benefit from a contact) please write to me with the following subject/headline: "CANCER CONTACT - In the same boat??????"

     

     

    I 

    W

     

    the

    "CANCER CONTACT - In the same boat??????"

    I am in the boat.  I am in a simular situation. Stage IV Andoeocarcinoma. We are at MD Anderson in Houston now. They are talking immunotherapy at this point for me, depending on some more testing.

    As we have done our reasearch online ect, we ran across an alternative treatment that caught our attention.  Let me say, I have not done this yet and dont know that it would work but the literature we've come accross in respect to cannabinoids and cancer is intriguing. Below is a link that provides an overview of this particular alternative treatment but there is also quite a bit of material online about the endocannabinoid system with regards to cancer. I would love to hear what you think about it and I hope everything turns out for the best in both of our circumstances. 

    https://www.medicaljane.com/2013/01/26/rick-simpsons-hemp-oil-medicine-natural-cure-for-cancer-using-concentrated-cannabis-oil/ 

    -Dan

  • Aang
    Aang Member Posts: 2
    edited March 2018 #7
    Immunotherapy for biomarker negative and small cell

    There are immunotherapy trial that have shown to be promising (Checkmate trials)

    http://www.onclive.com/web-exclusives/frontline-nivolumabipilimumab-improves-pfs-in-high-tmb-nsclc

    I hope this helps

  • svein
    svein Member Posts: 6
    edited July 2018 #8
    KidHorn said:

    Sorry to hear about it.

    Sorry to hear about it.

    My wife has stage 4 adenocarcinoma. It's not widespread. Only confirmed in her sacrum after having a lobectomy. She's EGFR positive and has been taking Iressa, then tagrisso, so her experience will be much different. My wife never smoked, ate well, and exercised. Sometimes you get cancer even when you do everything right.

    Fortunately for us, the treatment she's been getting has worked well. It hasn't cured her, but it's kept things under control.

    Her oncologist has been trying to stay away from traditional chemo since it doesn't work well and can have bad side effects. Hate to be the bearer of bad news, but better to know than not know.

    There's always a chance of being cured and maybe a new effective treatment will become available.

    i am suppose to start on

    i am suppose to start on tagrisso and am a bit worried about the bad side effects,  have you had very many  on this

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