spicysashimi Posted November 18, 2006 Share Posted November 18, 2006 Hi, My name is Aaron. I guess I had a weird diagnostic experience. They thought it was neuroendocrine carcinoma after one biopsy. I went for a second opionion. They did another biopsy, this time a core biopsy. At first they agreed with the neuroendocrine diagnosis, but then changed it to NSCLC. I'm stage IV with lymph mets and bone mets in my back and my right hip. Yuck. Anyway, I had one treatement for neuroendocrine (carbo/etoposide) and now I have had three treatments for nsclc (cisplatin/docetaxel/ avastin). As stated on my little blurb underneath, my tumors shrunk about 30% to 40% after two cycles of Cisplatin. I was/am thrilled. One of the worst side effects I've had recently was REALLY REALLY BAD reflux (heartburn). It took me a while to even recognize it as a treatable symptom. Now on a proton pump inhibitor called Protonix and feeling better. I'm glad I found this site. I've been reading everyone's posts. I hope you are well and I hope we all get through this. Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted November 18, 2006 Share Posted November 18, 2006 Hi Aaron and welcome I am so sorry to hear about your diagnosis but really glad you found this site. It sounds like you have a decent treatment plan in place and here's hoping that it continues to work! Please feel free to ask any and all questions you have and know that someone will be along with answers and/or advice soon. This site is the best place to find support and help and HOPE. Keep us posted and let us know how else we can help. My best to you, Chris Quote Link to comment Share on other sites More sharing options...
Patkid Posted November 18, 2006 Share Posted November 18, 2006 Well, that just sux. I am so sorry for your dx. Brian was so grateful for the relief he got from Protonix. He also learned that eating very small amounts very often helped. You could ask your dox for Ativan. Sometimes a lessening of anxiety lessened Bri's reflux/heart burn. Having to face this dx is a shame, but it seems so exponentially shameful when I consider your age. Aaron, I care and am uploading a hug and some support. You will find many wonderful friends here and lots of encouragement and concern. Pat Quote Link to comment Share on other sites More sharing options...
RandyW Posted November 19, 2006 Share Posted November 19, 2006 second opinions are always good. Glad to meet you under the circumstances. Sounds like a good solid plan. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted November 19, 2006 Share Posted November 19, 2006 love your tag! sashimi is a favorite of mine! How did you get that moniker? ease up on the radish and that will also help with the burn! Goodness, Man, you will have to meet Frank Lamb! I think there is a contest for the prettiest head. Don't know who will take first place. Hang with us. We are quite a group! Welcome~ Cindi o'h Quote Link to comment Share on other sites More sharing options...
Don Wood Posted November 19, 2006 Share Posted November 19, 2006 Welcome, Aaron! Sounds like you have a plan in hand. Keep us posted. Don Quote Link to comment Share on other sites More sharing options...
sharonjo Posted November 19, 2006 Share Posted November 19, 2006 Hi Aaron and Welcome, I am so sorry that you have to deal with this disease at such a young age. It just is so unfair! I am glad that you found this site though, lots of information and support here. Looks like your doc has a good plan for you, and thankfully it seems to be working. I am Stage IV NSCLC too. I had 6 rounds of chemo and am now in remission. This can happen for you too! Hang in there, keep a positive attitude, and stay strong! I will keep you in my prayers. Please keep us posted on how you are doing. God Bless, Sharon Quote Link to comment Share on other sites More sharing options...
raneyf Posted November 19, 2006 Share Posted November 19, 2006 Hi Aaron, I've got a diagnosis similar to yours and am close to your age. I'm sorry to meet like this, but hoping we can both be survivors here. My oncologist's plan is a little different than yours, so I haven't experienced chemo at this point. I'm sorry you're going through this, but happy to see it seems to be working. Keep me posted on how the treatments are going. Raney Quote Link to comment Share on other sites More sharing options...
ernrol Posted November 19, 2006 Share Posted November 19, 2006 Arron, Welcome, it sounds like you are getting some good chemo treatment and are havein similar results as I had. I did not have any bad side effects, but my chemo was a little different. One thing I do is drink lots of water. I think this helps. Keep us posted. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
Nushka Posted November 19, 2006 Share Posted November 19, 2006 Welcome Aaron, When I saw your picture and read your age it made me sad. I read a little further and saw where you already have a good chemo plan in place and are responding to it. That is great. I hope you continue to do well. Keep us posted and ask any questions you might have. There are many survivors here that can help and some great jokes to help when you are down. Nina Quote Link to comment Share on other sites More sharing options...
Ry Posted November 19, 2006 Share Posted November 19, 2006 I am glad you are getting shrinkage with your treatment. I hope you continue to do well. Welcome to our site. Rochelle Quote Link to comment Share on other sites More sharing options...
joanie55 Posted November 19, 2006 Share Posted November 19, 2006 Hi Aaron, So sorry you needed to find this site, but welcome and glad to meet ya. I'm a former Brooklynite with Stage IV. If I can be of any help, please feel free to pm me. Where are u being treated? Best wishes to you. Joan Quote Link to comment Share on other sites More sharing options...
TracyD Posted November 19, 2006 Share Posted November 19, 2006 Hi Aaron, Glad you found us here. I am stunned by your age, but then again, in the past months I've learned that this disease is not what I thought it was. It doesn't seem to care how old you are, or whether or not you smoked. I am happy to hear that your chemo is working, shrinkage is always good. I just finished my sixth round of chemo, a bit different from yours, but with the Avastin, and I am having similar results. Hang in there and know that we're all here with you, researching, praying, whatever you need. Tracy Quote Link to comment Share on other sites More sharing options...
Joe B Posted November 19, 2006 Share Posted November 19, 2006 Welcome to the site! There are planty of stories of hope here. I too am a non- smoker (never-smoker). Advances they are making in LC are absolutely amazing. We are seeing people treat this disease very successfully. Welcome again. Please let me know if you have any questions or need advice. Joe Quote Link to comment Share on other sites More sharing options...
Don M Posted November 19, 2006 Share Posted November 19, 2006 Don M Hi Aaron: I wish that no one had to deal with lung cancer, but especially so for the young ones such as yourself. I am coping with my disease just fine, but it would break my heart if my 27 year old son got lc. Anyway, it looks like you are on a good treatment path. "Yuck and sucks" pretty much describes everything about this disease. I have found that I can acknowledge the yucky and sucky aspects of it and still enjoy my life. Don M Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted November 19, 2006 Share Posted November 19, 2006 Glad to hear shrinkage. Quote Link to comment Share on other sites More sharing options...
jang Posted November 20, 2006 Share Posted November 20, 2006 Welcome Aaron...glad you found us. Quote Link to comment Share on other sites More sharing options...
EastCoastLadi Posted November 20, 2006 Share Posted November 20, 2006 Aaron, First of all welcome. I know you must hear this alot, but you are so young to be stricken with this dreaded disease! But you got one powerful thing on your side "YOUTH"! and you better believe that if your dr/s. haven't told you, well they definitely must be thinking about it. Saying that, keep us updated as to what's going on.... Grace Quote Link to comment Share on other sites More sharing options...
marym Posted November 20, 2006 Share Posted November 20, 2006 Hi AAron, I'm so sorry you had need to find this board. Hope we can be of some help. As treatment progresses, you'll have questions that members can relate their experience with. Best wishes. Mary Quote Link to comment Share on other sites More sharing options...
blaze100 Posted November 20, 2006 Share Posted November 20, 2006 Welcome Aaron, I am sorry you are here, but glad you found us. It is sucky diagnosis yes, but especially so at age 27! You are obviously not the "typical" lc patient, so just remember that the stats do not necessarily apply. Keep up the shrinkage Aaron. Barb Quote Link to comment Share on other sites More sharing options...
mary colleen Posted November 20, 2006 Share Posted November 20, 2006 So glad to meet you, and so glad that you found this message board. Though I'm very sorry that you have to deal with this diagnosis, I'll bet you'll soldier through and be helping others soon enough. Though I'm sure your world is not exactly filled with peers who can identify with your experience, I hope that your life is filled with good friends and family who can support you through this. Don't forget to browse the histories of the many advanced stage long term survivors on this board - I'll bet you you will be another one! Yell out here for help or info any old time you feel the need, and please keep us posted. My prayers are certainly with you.Remember that this certainly can all work out alright for you! mc Quote Link to comment Share on other sites More sharing options...
tnmynatt Posted November 20, 2006 Share Posted November 20, 2006 Welcome Aaron! Sorry for your diagnosis. I am praying for good results and a complete response for you. Take care. Quote Link to comment Share on other sites More sharing options...
Maryanne Posted November 20, 2006 Share Posted November 20, 2006 Welcome here Aaron, I am so sorry you had to find us, but glad you did as we are very knowledgeable and supportive group. There seems to have been some confusion about your diagnosis but it seems like it is straightened out now. So glad for the shrinkage, that is a great sign. I could imagine how devistaged you felt especially since you are a non smoker and to hear a diagnosis like that. So you see no one is immuned to this disease. Just curious, is there anyone in your family who was diagnoised with LC? They are finding out that there might be something in the DNA which could be a reason why non smokers can get this dreaded disease. Your doctors seem to know what they are doing. We are always here for you and please know the LC is not a death sentence as there are so many different treatments if one does not work then the will try something else. One thing you definetely have going for you is your youth and your strength. Keep a positive attitude as that is half the battle there. Keep us posted on your progress. Maryanne Quote Link to comment Share on other sites More sharing options...
spicysashimi Posted November 20, 2006 Author Share Posted November 20, 2006 Hi Everyone again, To answer a few questions: I am being treated at Sloan-Kettering (just got a ridiculously expensive bill for 2 months of outpatient treatment) and my uncle had lung cancer at 50 (although, as my dad is fond of saying, he was a bit more 'abusive' with his body than myself). Spicysashimi is an old screenname I've been using for a while and it is also the title of my blog (http://spicysashimi.blogspot.com). Why does my doctor only want to do six cycles of chemotherapy? If its working, why not keep adding the poison until a 'complete remission'? I know it still wouldn't be cured, but it'd be worth it for the piece of mind alone, even if that piece of mind will be temporary. All my best to my fellow survivors, aaron Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted November 20, 2006 Share Posted November 20, 2006 Hi again Aaron, Geez you remind me of me. When I was going through tx, I kept challenging my doctor to GIVE ME MORE! "Ha! You call that chemo? I'm tough. I can take it!" (then I wouldn't feel so hot) Next cycle, Ha! Give me more! Then toward the end after the accumulation, I raised the white flag... okay. That's enough. No more. As treatments go on, you may start to feel a little rugged around the gills, my tender sashimi. But, I will venture that when the 6 cycles are complete, that you can sit down and discuss if you want to do more. You're asking good questions. Cindi o'h Quote Link to comment Share on other sites More sharing options...
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