JoeI Posted November 13, 2015 Share Posted November 13, 2015 Hi, My name is Joe and I was just diagnosed with Adenocarcinoma lung primary last week, allegedly Stage 3. Had a CT scan that showed 2 lesions in the lower lobe of left lung as well as 3 swollen lymph nodes in the chest. After a biopsy of the furthest lymph node from the lung lesions (upper right chest), malignancy was confirmed. Just had a PET scan that showed lesions in my left iliac (hip bone) and this morning I am going in for a biopsy of that area as well. Clearly, there's metastatic activity. I'm really upset. I'm a divorced father of 2 young tween daughters, 13 & 11. My ex-spouse and I just told my daughters the situation and I am having difficulty with extreme sadness over their reactions. I am seeking alternatives to chemo and radiation as I don't want to be poisoned and burned. I did speak to my Naturopath who confirmed that there are holistic treatments that can treat this issue with higher success rates than the allopathic approaches. When I spoke to an oncologist and I minted alternatives, he gave me the answers I expected. He dismissed every other potential treatment as 'unproven' and that the slash, poison and burn approach was the only way. I've done a bit of research and the numbers for these treatments are not exactly encouraging. I'm not expecting a full on cure, though 97% recurrence rates are not comforting especially if I have to suffer greatly under these treatments. It's all confusing and even after a week, I am so damn tired of talking about cancer. I feel like it's permeated throughout my every day life. Of course I understand that it's still new and letting people know what's going on is only going to kick up unsolicited advice. I'm not sure what I am seeking on this forum, but I do know that I live with my thoughts and fears without expressing them fully to others. I seem to be the one consoling everyone else and as I said, I am tired of talking about it all. Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted November 13, 2015 Share Posted November 13, 2015 Joel, We are all tired about talking about cancer, especially lung cancer. If you confine your focus to treatments and cures, then you will shift from tired of talking to depression. The lung cancer cure rate statistically is sadly very low, particularly for metastatic lung cancer. So much so, that most everyone I know and established cancer treatment organizations gave up using the "C" word years ago. Our battle is to achieve "no evidence of disease" NED and for me it has been an 11 plus year fight. Now, unfortunately you've joined our lung cancer survivor club. The question is how do you fight. First, and thankfully, you have a choice: naturopathic or conventional treatments. I've known many that chose the former but while they avoided the dreadful side effects of conventional treatment ("slash, poison and burn"), none are alive today. Of those choosing conventional methods, some are alive. I'm not citing any medical authority to bolster this data. Just my 11 plus year experience. So, your diagnosis, regardless of treatment alternatives, is life threatening - lung cancer is a disease of death! Your treatment alternatives, my experience, yield no chance of extended life (naturopathic) or some chance of extended life (conventional). This is your decision space, and I respect your right to choose. Your PET results suggest Stage 4b non small cell Adenocarcinoma lung cancer. There are two conventional treatment alternatives: chemotherapy and targeted genetic based therapy. Only Adenocarcinoma benefits from new targeted genetic therapies. So in a macabre sense, you are lucky to have Adenocarcinoma! Here is some information about targeted therapies - http://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/targeted-therapy Regardless of your treatment method, you are most welcome here. Feel free to ask questions. We have a network of long tenured lung cancer survivors who are happy to provide their insight. Stay the course. Tom CindyA 1 Quote Link to comment Share on other sites More sharing options...
Donna G Posted November 13, 2015 Share Posted November 13, 2015 Hi Joe. Glad you found us. Sorry to hear about your diagnosis. I remember when I was told I had lung cancer, I was devastated. The treatment of chemo, radiation, surgery and more chemo was really hard to go through but- because I went through it and responded well I am here today. As Tom said I have "NED" ,no evidence of disease. Let us know what you decide. I hope you take conventional treatment and down the road you get to walk your girls down the isle on there wedding days. Keep us posted. Donna G Quote Link to comment Share on other sites More sharing options...
Cheryncp123 Posted November 14, 2015 Share Posted November 14, 2015 Joe, it is ok if you don't feel like talking about cancer, we all get tired of it. I think you will need a support group made up of people who are going through and feeling the same feelings as you do at some point. I was diagnosed this past April with stage 4 metastatic adenocarcinoma of the lung. I tested positive for the ALK mutation (have you had any genetic test done?) I was started on an oral targeted therapy medication called Xalkori (crizotinib). I take 2 pills a day and I have had very few minor side effects and most days I do not even think of my cancer.My last pet scan showed NED (no evidence of disease), and my blood work is good so far. I still work, enjoy friends, family, and all of the activities that I have always enjoyed such as traveling and watching Alabama football, Roll Tide. I just want to make you aware that there are many more medications available today for the treatment of lung cancer than there were in the past with far less side effects Although, there is no "cure" at this point, my quality of life is as good or better than before my diagnosis and I am taking full advantage of the good days and taking it easy on the not so good days. I am keeping you and your family in prayer. Quote Link to comment Share on other sites More sharing options...
diane_arvizo Posted November 17, 2015 Share Posted November 17, 2015 It's all confusing and even after a week, I am so damn tired of talking about cancer. I feel like it's permeated throughout my every day life. Of course I understand that it's still new and letting people know what's going on is only going to kick up unsolicited advice. I'm not sure what I am seeking on this forum, but I do know that I live with my thoughts and fears without expressing them fully to others. I seem to be the one consoling everyone else and as I said, I am tired of talking about it all. Hey Joe, I can understand what is going through your mind. I advice you to stay calm and composed. You may face fear but believe me almost all disease have treatments. So have faith in technology and god. Talk to close friends or family members and try to avoid fear. God bless you! Quote Link to comment Share on other sites More sharing options...
michellep Posted November 17, 2015 Share Posted November 17, 2015 Hello Joe! I'm so sorry that you have so much to deal with. The only advice I can offer you is to do as much research and you can before you make any major decisions on which type of treatment you decide to use. There are many options besides the traditional chemo/radiation ones. Good luck to you and please let us know how you're doing. ((hugs)) Quote Link to comment Share on other sites More sharing options...
JoeI Posted November 21, 2015 Author Share Posted November 21, 2015 Latest update: Brain scan showed no abnormalities and I have tested negative for all mutations...Lucky me. I also got my 2nd opinion from CTCA and they concur that Chemo is the way forward. I'm still not convinced. The side effects of this treatment are so heinous that the statistics of those related to death are more frightening than the disease itself. I'm not interested in being a hero or treatment vigilante, however the stats of recurrent cancer and other potential causes of death give me pause. I have 2 more consultations scheduled for next week with different providers of care and then I'll take some time to weigh the options. Recommendations from CTCA: IV Carboplatin, Avastin and Taxol. 4 rounds. Once every three weeks. (7-8hr session). Sounds like a party ... Quote Link to comment Share on other sites More sharing options...
MommaTothX7 Posted November 22, 2015 Share Posted November 22, 2015 Hello Joel - I agree with everyone else. LC is a devastating diagnosis but with support from family, friends and online resources make it "a bit" easier. I went thru surgery, chemo and radiation...still not done as a new spot has shown up. I just remind myself every morning, I'm here, I woke up, now let me kick cancers a** I wish you much luck and hope you keep us informed on your decisions. Quote Link to comment Share on other sites More sharing options...
CindyA Posted November 24, 2015 Share Posted November 24, 2015 Hi Joel, Welcome to the LCSC message boards. I am sorry about your diagnosis. I know this is so very new to you. I want you to know that we are here for you as a group. LUNGevity also has a LifeLine program where we connect you to a someone who has had a similar situation who can mentor you and help be a guide. If you are interested in that please let me know. Here is the link to get started or you can email me directly, whichever is easiest for you. http://www.LUNGevity.org/LifeLine We are here for you, Cindy calmendarez@lungevity.org Quote Link to comment Share on other sites More sharing options...
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