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jim1013

New here..really need advice

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My best friend (60 yo male) was recently just diagnosed with NSLC adenocarcinoma and it really came out of the blue as I know some of you know.

I really want to help him, but I also need advice on how to proceed. He got a PET Scan from 1st doctor revealing the cancer had not spread, tumor is in tough spot, well differentiated, and considered stage 2. They tested fluid in the lung (about 1 liter) which came back negative for cancer.

2nd opinion was earlier this week where this doctor was not so optimistic. He said this kind of fluid is "almost always" malignant and is considering my friend's cancer stage 4 "until further tests prove otherwise". Needless to say, this really upset my friend.

I guess my question is how accurate is thoracentesis/cytology exams (where they test pleural fluid in lung) and what should we do now? My friend needs support right now and I really want to help him get through this. Surely this test must be accurate sometimes or they wouldn't do the tests on patients.

Has anyone had experience with this? I think he is going to go for a repeat test of the fluid and possibly a biopsy. Thanks so much for any advice you might be able to share. -Jim

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I and others would recommend you go to cancergrace.org and ask your question of the doctors there. They would be better able to tell you an answer to that.

My gut instinct though is that you are right to be bothered by this reaction from the second doctor. I've never heard of anyone here or in my real life who had one done, it was deemed negative and the doctor said they didn't believe that. I also disagree with the 'almost always' comment, and I'm sure there are quite a few people here who have had that test and it was not cancer. There are other reasons for that fluid and not just due to cancer.

Definitely ask over on the board at http://cancergrace.org/ and I'm sure they will have good advice for you.

You are a wonderful friend helping out with this.

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I certainly understand the anxiety over this, and the additional anxiety over two conflicting reports.

My lung surgeon really upset me on my first visit by saying he thought my lymph nodes were enlarged and he suspected more extensive cancer than the CT scan indicated.

But, the only sure fire diagnosis comes from tissue sample. Until then, they can only suspect. Turns out, in my case, he was wrong.

I don't know about the fluid situation, but what would that second doctor know about it if he hasn't even tested a sample? I wouldn't put a lot of stock in the 'opinion' of a man who hasn't conducted a test, when another doctor who has conducted the test has said negative.

Information is the only thing that will ease this anxiety, and, unfortunately, it takes a bit of time. Seems like forever for those of us waiting, but it will all happen.

I wish your friend the best of luck and please keep us posted.

Cindy

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I agree cancergrace is the best place to put this question to the docs there. My fluid did test positive for cancer cells but if it were not possible that it would NOT show cancer cells, why would they do it? Makes sense to me he could show a tumor somewhere and the fluid not be infected with cancer cells. I'm pretty sure it can also come from pneumonia.

Good luck and hope you and your friend get some straight answers soon. He's lucky to have you looking out for him.

Judy in KW

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I agree cancergrace is the best place to put this question to the docs there. My fluid did test positive for cancer cells but if it were not possible that it would NOT show cancer cells, why would they do it? Makes sense to me he could show a tumor somewhere and the fluid not be infected with cancer cells. I'm pretty sure it can also come from pneumonia.

Good luck and hope you and your friend get some straight answers soon. He's lucky to have you looking out for him.

Judy in KW

Thank you for the kind words everyone.

Judy-You seem to have the same exact diagnosis as my best friend and he also lives in S Fla. Could you help me understand a little more? Say the 2nd test comes back positive like the 2nd doc thinks, what does that mean for my friend? Is it still doable?

I see with your treatment that fluid has stopped in the lung and you are doing well. Any advice you might able to share regarding treatment, what to look for going forward, words of encouragement for my friend, etc? Anything is helpful regarding this road to hopeful recovery being that you both have very similar situations. Many thanks to you all. -Jim

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Jim, I can tell you that I'm a 4+ year survivor. Went into remission soon after 6 rounds of Carboplatin, Taxol and Avastin followed by a few more Avastin. I was off chemo for 6 mos--fantastic. Since then I've been mostly on chemo: Alimta--very doable if you get in charge of the bowel issue, Tarceva that didn't do squat for me and may have let the cancer get a leg up in my abdominal lining, and now Taxotere that I'm handling well too. All but the Tarceva pill have been on 3-wk cycles. The cancer in my pleura has been in remission I think a year in Feb. Your friend can feel good that he has a great chance in living a pretty normal life.

Sorry it took awhile to get back to you. Been busy with family.

Judy in KW

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Jim, I can tell you that I'm a 4+ year survivor. Went into remission soon after 6 rounds of Carboplatin, Taxol and Avastin followed by a few more Avastin. I was off chemo for 6 mos--fantastic. Since then I've been mostly on chemo: Alimta--very doable if you get in charge of the bowel issue, Tarceva that didn't do squat for me and may have let the cancer get a leg up in my abdominal lining, and now Taxotere that I'm handling well too. All but the Tarceva pill have been on 3-wk cycles. The cancer in my pleura has been in remission I think a year in Feb. Your friend can feel good that he has a great chance in living a pretty normal life.

Sorry it took awhile to get back to you. Been busy with family.

Judy in KW

Hi Judy,

Thanks for getting back to me earlier and sorry for the delay, spending a lot of time with family and my friend over the holidays. This is very encouraging and I will share with him. If it's ok with you, can we stay in touch on here throughout this journey? He has not yet started chemo and undergoes another test/biopsy on pleural fluid this week. Who knows, maybe there is a chance it may come up negative again.

If it does come back positive for cancer cells, I sure hope they get started on chemo right away. I just feel like the longer we wait, the more chance cancer can spread. Do you think the Alimta is the way go for when he does begin treatment and anything else we should look into in the meantime?

I can't thank you enough for all your help Judy, our interaction will certainly cheer my friend up and will encourage him to join the boards. Is this a good way to stay in touch with you? Many thanks and Merry Christmas and Happy New Year. -Jim

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Hopefully, the fluid is not malignant, then a cure is a good possibility. I'm not a doctor, but I think concurrent radiation and chemo (though tough) is the curative approach to non-surgical treatment when going for a cure. I don't think Alimta is typically part of this first line treatment - more likely Cisplatin and something in addition. I am assuming from what you have said that someone has suggested surgery is not an option - a second opinion on that would be a good idea if the effusion is benign. Here's a good link to the National Cancer Institute's site on Stage II lung cancer:

http://www.cancer.gov/cancertopics/pdq/ ... onal/page8

When they do a biopsy, they should test for EGFR mutation (making Tarceva a good option if the cancer is more advanced) and also test for an ALK translocation (making Xalkori a good option if the cancer is advanced.)

I'm sorry the search feature is not currently working on Cancer Grace (if that is still the case) - it makes it a lot more difficult to direct you to best practices in treatment.

You're a good friend if you are helping as an advocate or general support.

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Jim, we can certainly stay in touch here. Except for infrequent usually brief lapses, I'm pretty regular onsite and there is always the pm. I get email notifications of them.

Duh, time flies when you are having fun. My chest wall has shown no evidence of disease since 2010, making it two years this Feb. I might mention, if I haven't already, they never did find a tumor in my lung or anywhere else. That made radiation and surgery not an option. My cancer manifested itself in a malignant thickening in the pleura or chest wall (now gone) and then in the lining of my abdominal wall. In any case, the fact of the pleural effusion and the malignancy in the chest wall constituting a matasticism (sp?) is what makes me advanced LC. It really has had no relationship for the most part to symptoms or how I feel except for chemo side-effects. I had fluid again in my abdomen (again with evidence of cancerous cells) so the fluid is something I really seek to avoid.

Hang in there.

Judy in KW

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Hey guys, hope everyone is having a great start to the new year. So I have an interesting update to my best friend and was curious as to what some of your thoughts might be.

After my friend's first fluid test was ruled negative for cancerous cells, his doctor recommended another fluid test AND a biopsy. My friend went in for the procedure and they took a biopsy of the lining and another sample of fluid (this time less fluid).

Long story short, both the fluid and the biopsy came back negative! Still, the doctor is being cautious and wants to consider it stage 3 or stage 4. My question is why?? As I recall, the doctor said it would be stage 1 if fluid and biopsy remained negative. But no, apparently it being negative didn't do anything for the staging. So now chemo is about to begin and we are all confused more than ever...any thoughts/ideas as to why staging wasn't improved and why tests continue to come up negative? I thought biopsy was much more accurate than the fluid tests? Thanks all-Jim

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Jim,

Sorry, you're asking questions out of my pay grade. I would pose it to the oncologists on cancergrace.org - you can "Ask an Expert" here on LCSC if I could find the link, or just join cancergrace.org if you haven't already.

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Jim, I second Stephanie's suggestion to go to the docs at cancergrace. It's free and they are very good at giving an early response. I suspect it's that pesky effusion that they are looking at. It's what threw me into advance stage but mine did have cancer cells in it. But then I didn't have the tumor, so????? I surprised they biopsied the lining. I assumed that was not an option for me--either in the pleura or the abdominal wall. Then again, I suggested a look-see in the abdominal wall and my onc said they didn't want to put me thru it. My RN daughter suggested it wouldn't add anything to the pic. In your friend's case, I can see why. Let us know what you find out. Any chance here for a second opinion?

Judy in KW

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Well my buddy starts chemo tomorrow for first time and neither me or his family know what to expect. The doc won't even roll out a plan or dates past his 2nd chemo treatment, is that normal? I guess I'm just happy for him that both fluid tests were negative and the biopsy was too. Anyway, thought I'd keep you all updated and please feel free to share any thoughts/advice that you can. God bless -Jim

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Jim, just to let you know, I'm hearing you. Frustrating to say the least. They really are stubborn about those fluid issues. Maybe they plan on doing a scan after the 2nd chemo altho I don't think they normally do one that soon. Sounds like they are feeling there way around like they did with me. Sometimes it seems better to be in the norm.

Judy in KW

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I'm not sure what most doctors do - but my oncologist never did give me the whole picture. She would just schedule one or two treatments - and then just when I would think maybe it was over she'd say "gee, you're doing so good, let's just do one more" -- she did that until the end. I'm sure she would have told me everything if I'd pushed - but I didn't - so probably didn't want to know.

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Good points Dianne and Judy. I stopped by his apartment today following his first round of chemo and he was pretty energized from all the steroids. Wonder if he may get pretty sick the next two days. They are giving him Alimta too I believe. He seems upbeat, doc says he shouldn't get nauseous at least. Next treatment scheduled in 3 weeks. What should we look for in blood tests/other tests moving forward? I think he has a brain scan coming up for precautionary reasons. Thanks- Jim

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Glad to hear your friend is feeling up. They give good anti-nausea meds now and if they don't quite nip it, he can ask for Zofran or sorry, starts with a C??? I don't think blood work tells much specifically about lung cancer but is used to monitor WBC, RBC, platletts etc. Follow-up relies mostly on Scan--CT, MRI, PET. Then you look for tumor shrinkage or other signs the chemo is working.

Hang in there. You friend is lucky to have you.

Judy in KW

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Hey everyone, just an update for those who have been following this case of my best bud.

After two rounds of chemo, he is not doing well. His attitude has changed from positive to negative, refuses to eat because he isn't hungry, doesn't believe in chemo and says at best, it"guess work", His family and I try to keep a positive look at things saying we don't know how well it's working yet, but there are success stories out there.

On Thursday, he has a follow up appt. with his oncologist and I offered to go with him. He liked that, so I will be there to take notes for him. To me, it seems his oncologist doesn't ever call for follow ups, doesn't give him the whole plan in terms of how many more rounds of chemo to expect, and doesn't care to help figure out his lack of eating issues. He sees his oncologist 1x a week max and he needs him more. After his first round of chemo, he did have to have a blood transfusion as his platelet levels were really low. Maybe this is why he is feeling like this again?

So we should know more Thurs, but can you guys offer any advice on dealing with the hunger/supplement issue or anything else? I have found myself and his family becoming angry, depressed, disappointed in our health care system, etc. many many emotions....and now I'm ready to quit my job for my best friend, he needs all the support he can get right now.

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Hmm Not sure where to start!

If your not happy with Oncologist either talk to and tell Oncologist your concerns or find a new one! Address the problems directly!

Do you know what Kind of Chemo he is on???

Anti depressants may be in line. He would not be the first to feel this way and not the last either!

Not eating. You eat when your hungry. Stay Hydrated! that is important because dehydration is not fun in Hospital! Eat what you want when you want. Boost and ensure with some muscle protein powder is also good idea! If you want to see what happens if you do not eat Google Cachexia. that is what happens, and its not treatable!

I think the key to the whole series of problems might be adding in some type of Anti Depressant though.. You can always ask.

Don't quit your day job but spend as much time as possible and you might ask the boss if you can take off for appointments and treatments in the future.

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Hi Jim,

I haven't weighed in on this thread to date because your best friend's case was nothing like mine. However, I can relate to the appetite issue. I'm currently struggling with mine, and when I look at food, it just is not attractive to me. I'd just as soon not eat.

What we're doing right now is making sure that there are lots of options in the refrigerator and cupboard for me. I am enjoying fruits and vegetables most. (Not best for muscle or calories), but it is food. I find if I can get my appetite jump started, I will eat a small amount of food. For me, breakfast foods work best. Oatmeal with fruit and brown sugar. Crunchy sweet snacks. They appeal to me.

My husband has learned that if he piles my plate high with food, I get discouraged looking at it and then don't want to eat at all. I know this is psychological, but we've learned that it's best to put a tiny amount of food on a smaller plate, and if I'm successful in eating that, I seem to be willing to try a bit more. I feel better about that, rather than seeing a big plate of food that I know I can't possibly eat.

I like soup a lot more than meat and potatoes. But he sneaks them in, in the soup. He makes hearty soups but only serves me small portions and I am doing good with that.

I don't have nausea, I just don't want to eat. So maybe these hints will help?

I think Randy's suggestion about an anti-depressant is good too. I have not done that yet, but if I feel I'm waking up feeling despondent more days than not, I'll be open to it. I've heard it can do wonders for people.

Jim, I echo what others have said. What a dear friend you are. I hope you don't have to quit your job. Maybe some hints here will help a bit to enable you to feel better about all of this.

Do remember to take care of you! I've been a caregiver to 3 people in my family with lung cancer, and it takes quite a toll. Make sure you are getting rest, and that YOU are eating healthy foods. And if necessary, you should consider medication such as an anti-anxiety or anti-depression medication. Your ability to care for him is AS important as his care with the doctors right now.

Judy in MI

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Thanks for responding to this one Judy!! Always helps with more input from other perspective! I was never a patient so can not offer that side of this fight!

Also if you want to explore stopping treatments, please take a look at the forum, "The Path Less Traveled" moderated by the late Dean Carl He did that and provided some great insight as well!!

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Jim - you've already received lots of good advice. I agree with Randy about the oncologist, although as far as number of visits I think once a week is pretty typical during treatment. My doctor also was not forthcoming coming about how many treatments, etc. I have also heard this complaint from others. I think perhaps they are concerned about the patient getting discouraged by knowing there are so many treatments left to go and they just give you a little information at a time. I did not ask (maybe because I really didn't want to know). I think maybe starting with a really blunt, to the point, conversation with the doctor might help. I imagine it must be hard for doctors at times because some people want to know everything, and others are happier not to - so perhaps they try take their cue from the patient.

I agree with everyone else that it sounds like your friend might really benefit from an anti-depressant. I struggled with low blood counts as well, and that can sure drag you down and effect your mood. Hopefully they can bring those up, and it will help him feel better. Keep reminding him that the treatment will end and he will feel better.

As for food - that was a challenge, but thanks to peanut butter I still managed to gain weight. I think my poor husband had to run to the store almost daily to pick up something I thought I could eat that day. At one point all I could eat was Butter Pecan ice cream! Fortunately that didn't last long or I would have gained twice as much. I know eating healthy is important - but during treatment you just need to eat whatever you think you can.

Your friend is certainly lucky to have you. I can't speak for being a caregiver myself - but I really do believe that is harder than being the patient.

Please keep us posted as to how you and your friend are doing.

Diane

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keep in mind Ice cream and cream soups are better than yogurt and broth because they have more fats to fight the cachexia !! so you get more benefits!

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