<p>Epistrophy, thank you so much for that inspiring link; it helps a lot. Thank you very much too to everyone else for your help and support. </p>
<p>Happily the steroids took care of a few symptoms, most importantly the nausea, so, the chicken soup. italian inc, boost and ginger ale have all stayed where they were sent. Of course, this just treats symptoms, not the primary cause. I am in my office this morning but will leave at 1:30 for the hospital, and at 2:15 they do about 45 more minutes of some more film (???), and then my first treatment, and then four more days of that, and then chemotherapy resumes one week from today. </p>
<p>Momof2inca, thank you for the Mac commands, I really need to read the manual. I plan to spend the weekend resting my body, getting to know my Mac, etc.</p>
<p>Thank you so much - I made it - and am back in my office, where I am happy. Tired but also starting to get a little bit hungry, which I am sure is thanks to the deceptive steroids. Not that I’m not grateful for the symptom relief, still…I wish it were “real” hunger, driven by a healthy body’s response to a need, vs. an artificial, chemically induced hunger. Still, I’ll take it for now…</p>
<p>Wait, what did they put you on steroids for? Steroids can be used for a couple of different things. If it’s corticosteroids that you’re on, those are used to reduce swelling and inflammation, right? I’d automatically assumed that they’d put you on Prednisone or something to try to reduce swelling in your lymph nodes so you could breathe easier. I hadn’t thought that it was to artificially increase your appetite. Maybe I’m confused…</p>
<p>If it’s just to increase your appetite, that stinks. Here’s hoping it was just to help you breathe easier, and that your appetite is actually your own…!</p>
<p>DMD77 very wisely put - I never thought of it that way. You’re right. </p>
<p>Aibarr, the steroids are for symptom relief, which in my case includes shortness of breath, loss of appetite, nausea, inflammation, etc. My issue - and my opinion - is that it’s a very dangerous drug, in that, you cannot really tell if you’re getting “better” or “worse” because the drug masks symptoms - critical symptoms that let you know that a particular treatment is working, or isn’t. Your only other way to know is via scans.</p>
<p>Expressed differently, via this five day intensive radiation, I could actually be getting “worse” but not know it, because the steroids provide false cover. </p>
<p>That’s why I don’t like drugs. I like to know what is “real”, even if it’s uncomfortable, and I don’t like hiding behind a chemical haze…still, I do recognize the need to eat, as well as the need to not throw up, and oh breathing is good too, so, I’ll take it…</p>
<p>Go ahead, eat something! I’m so glad you’re feeling okay. I think that the various diagnostic tests you are getting should be able to let you know if you are getting better or worse. So please don’t worry too much about steroids masking symptoms.</p>
<p>“the steroids are for symptom relief”. It is more than that. Certain acute side effects of radiation, some of them life-threatening, are minimized by steroids. The efficacy of your radiation will show up in scans. So keep up the steroids. Best,</p>
<p>I don’t know if this would be what you’re looking for in terms of patient advocacy foundation (seems more research-based) but the mission statement caught my eye and just in case…</p>
<p>“Our mission is to provide information and
support for families, caregivers, and friends
whose loved ones are fighting their own
battle with cancer; to raise awareness
about lung cancer and childhood cancer;<br>
and to provide research grants to those making progress in the battle against lung cancer”</p>
<p>It’s a foundation created by the parents’ of a 19 y/o who lost her battle with lung cancer. Again, I know it’s probably not what you’re looking for, so I feel kind of bad for posting, but then again, I figured if you wanted to contact them, they may give you leads or ways to help… Just throwing that out there…</p>
<p>That’s what I thought… and it was especially infuriating seeing how she was missed dx’ed for months–an earlier dx could have lead to brighter outcome… I was worried about posting it because I didn’t want to upset you, so if I did, I’m sincerely, truly sorry…</p>
<p>Q, it’s o.k. - I too was misdiagnosed, for weeks - actually had the doctors lookng for allergies of all things…I’m not upset, but, I did get notice of a 20 month survivor giving up today, and, an 18 month survivor just died. </p>
<p>No one can really know what causes another person to give up, but, I wish they would not have given up.</p>
<p>Not that they have anything to do with my specific biology, but still…</p>
<p>This is an evil disease, and I am going to do everything in my power to fight it, not only within myself, but also with others…</p>
<p>“it was especially infuriating seeing how she was missed dx’ed for months”</p>
<p>I am not quite sure that misdiagnosis is the correct way to phrase it. More appropriate would be it took several months to reach the diagnosis. Diagnosis is still more or less based on testing the most likely causes first. In most case, lung cancer for young nonsmokers will not appear on the radar until other more likely scenarios are ruled out.</p>
<p>We are all here cheering you on! It seems like your docs are right there with you fighting all the way. Pamper yourself as best you can when possible and enjoy your new Mac!</p>