spicysashimi

Over the weekend, I had an intense pain in the backs of both of my thighs. It sucked. Popped about 20mg oxycodone. It seems like its subsided, but the top of my butt/bottom of my back still feels sensitive. I fear I have some nerve problems now and I fear that the cancer in my back has made its way to my spinal column. Any ideas? What can be done? Radiation?

Here's something I just wrote on my blog that I thought I should post here since it is very lung cancer related, and I hope many of you may relate, at least partly. *warning, curse words have been editied but still exist, in some metaphysical form* Everything was honkey-dorey until I stumbled upon a blog about a 27 year-old woman with colon cancer. She was married with three kids. I read it backwards and quickly realized that she had died ... recently. Then I read the detailed day-by-day account of her time in the hospital written by her husband. It started with a debulking procedure, and they had hoped for a short 2-3 day admission, but it turned into her final visit. One thing led to another. Lots of pain. They gave her so much pain medication, it made her hallucinate, so they gave her Haldol. She was also on an Ativan drip because she was rightfully overwhelmed with anxiety. She had a catheter with a bloody-mixture as an output, she was jaundiced, she was nauseus. She was in and out of sleep. Dying from cancer is just awful. I'd rather be hit by a truck. I hate the slow, inevitable deterioration. You can sit up and watch your body unravel, piece by piece. Even though you excrete blood, you eat through a feeding tube and your kidneys don't work anymore, you can still think and observe and realize what's going on. You can see that bag of blood in your catheter bag, you know why your aunts and uncles you don't really talk to are now suddenly in your room. Its not a peaceful death. Anxiety about death from cancer is inversely related to the time of your diagnosis. Sure, you got that initial 'shock', but there are a lot of unanswered questions and still a lot of options. That's different than being able to look down the road and seeing where it ends. That's just scary. Terrifying isn't a strong enough word. And I feel fine. Sure, I have a little chest pain, the occasional bone pain, but other than that, I feel like a normal person and can do what everybody else does, except I have a clock that never stops ticking. I know that sometime in the near future, my cancer will metastasize at a rate or to places in my body that make my disease unmanageable. The array of anti-cancer weapons will be ineffective or unsafe for whatever reason. I will be left "alone," as a host for the cancer to destroy wondering how many more hours or minutes before I can't breathe anymore. Humans are programmed to survive. We've built civilizations out of the abstract idea of survival, both individually and as a race. We can't accept death. We do all sorts of crazy s*&@ to try to avoid death. In the past, if you were going to die, you were sick, and it likely didn't surprise you. Now, doctors can tell you that you will die in two years, and you feel fine, and you wonder just how this is going to play out. That wondering sucks a**. Then there's this whole bull$&*@ about how since you feel good and you know you are going to die, you should do all those things you would want to do before you die. I hate this so much. In fact, I hate it when people ask me: "is there anything you want to do? any places you want to see?" etc. This is riddled with so many problems. First of all, the practical issues - money. Although I believe all cancer patients should have the option of a lump sum of their anticipated social security payouts, it ain't reality. Incredibly, I can't even get a tax credit. We are as broke as y'all are. But even if I was an Arabian Prince, I'm not sure I would start backpacking across the Andes in this sort of last-ditch attempt to see the world before I shut off. For what? Memories are only good if you survive. This reminds of that game we would play when we were younger, "what would you do if you had 6 months to live?", a variation on the ever-popular "what would you do if you had one million dollars?" Its a cliche and it is, for the most part, meaningless. That said, there is still a little voice on my shoulder saying: "what the f%*# are you doing, convincing some punk kid to do two days of commuity service and trying to explain the uncertain collateral consequences of a disorderly conduct violation on his record? Go get a tan." I am almost at peace with this last bit. Tans are meaningless. I want as many meaningful experiences as possible - that includes working and spending time with Julia, my friends and family. Don't tell a cancer patient that they should go on a vacation. First of all, it reminds them that they will probably die and you expect them to die. It also cheapens everything, especially for someone who really believes in his job. A court officer friend of mine confided to me: "what are you doing here? why are you in this dump? get out of here." I answered something polite. "If it was me, I would not be here," he said. But I enjoy and feel honored to help poor people at the least simply navigate the system and at the best, beat the system and restore some sense of pride or respect to their lives. Most of the time, I try to let people know I don't think they are criminals and I think they are as deserving of the same respect I would give to the most esteemed of judges. As a felon myself, I know how important that is. This world ain't set up for people expecting to die. And so, for the meantime, I will continue to live, not expecting to die but to live to a ripe age. One of my favorite images I think about is me on a book/magazine cover, with folded arms, with some subtext about How I Survived Stage IV Lung Cancer. I will continue to imagine myself visiting my doctor ten, fifteen years from now, reminiscing about how dark we thought it was. I will continue to make plans and take vacations, not as someone who expects to die but just another schlep trying to get a tan for tan's sake.

My last chemotherapy was Jannuary 8th. I'm over a month out and it appears that neuropathy gets worse (not better) as time goes on. I can't feel the bottoms of my feet, it feels like I am walking on stumps. Curious if others have felt similarly, how long it lasted, and whether anything helped. aaron

Almost lost my balance on the train today on the way to work, feeling very spaced out and nauseated. This sucks. I can't work in this condition. Maybe I'll try taking it at night. Its not a dehydration because I hydrated. I just hope its a reaction to the Tarceva and not some new buggers in my noggin. aaron

Just curious if anyone else has had any dizziness from Tarceva. By the way, my face looks like pepperoni and I have NO desire to eat. I thought this drug was going to be easy. It better work.

I've had relatively minor pains, but more like "pangs" at a couple spots in my head. I just finished chemo and am on Traceva and Avastin. My last brain MRI was in August and it was clear, since then I've been on chemo and everything shrunk so I wasn't too worried about the ole' noggin, but now I'm a little worried. Thoughts? aaron

Agreed - way too slow. I went from CT to PET in about 10 days. While progression might be an issue, I'd be more concerned about your piece of mind (what stage is it? where is it? etc.). I'm sure you can travel to a place with more equipment and more openings. If not, I'd call everyday for last minute cancellations. Keep us posted.

Thanks for all your input. My girlfriend Julia has TONS of fancy organic exfoliants/cleansers/moisturizers. This bump may be fading. I am gonna stick with my original approach. Exfoliate every day or every other day. Moisturize with Kiehls face lotion. And with a nod to Ernie's suggestion, more water and more baths. I'm actually taking a domestic vacay in North Carolina. Mexico is coming but we're gonna wait until it warms a bit. aaron

Hey guys, Second day of Tarceva and I think I am already breaking out with the rash. I have something that looks like a pimple on my face and I fear more are coming. It itches a little bit too? What can I do to help keep it at bay? Exfoliate? Moisturize? Cross my fingers? Doc said call only if it gets out of hand, its not there yet, but knowing my luck this will get somewhat unsightly just in time for my vacation. Thanks! aaron

Yeah, I had this tough wart on the side of my index finger for years. Looks like it don't like chemo. I also have some sort of toenail fungus (not too bad) that I was hoping would be killed off, but alas, its hanging on. I might have to use some antifungal. Oh, and I always wanted to see myself bald and was never fond of my developing body hair. aaron

I always thought it would be kind of a sick but funny satire on weight loss advertising - Want to lose weight fast? Curb your appetite? Trim those love handles? Try new and constantly improving *CISPLATIN* Guarunteed to help you shed those excess pounds by making every piece of food taste like garbage! After 3 or more cycles, even the idea of eating will make you sick. Act now, and we'll throw in at no extra charge, *TAXOL*, a $2,340 value. Be advised that chemotherapy may cause nausea, constipation, diarrhea, neuropathy, neutropenia, alopecia, insomnia, mouth sores, fatigue, and depression. Use at your own risk. Neupagen and Neulasta not included. All rights reserved.

I'm shooting for 60 years. I'll be ready to go at 88.

Ernie and for all the others who are wondering why I would do this: If you poke around the internet for nsclc, there's a lot of people, people without disease, talking about various aspects of our disease, including survival expectations. I am doing this to challenge those assertions and to tell our own story. I'm frankly irritated at how doctors, nurses, and other people (statiticians) tell me 1) how my cancer developed, 2) when it developed, 3) that it probably won't respond to chemotherapy, 4) that I'll feel like X, 5) that I'll be dead in X months, etc. I've already surpassed the 12 month mark for lung cancer (positive x-ray back in feb 2006), my cancer responded to chemotherapy, and people like dadstimeon on this board is trucking along at a whopping 56 months (awesome, btw!). I have a thing for people speaking on other peoples' behalf and I don't want to speak on our behalf. We are a marked group of people. Non-disease people will talk and write and about us telling a story that, in my opinion, isn't really borne out by the variety of experiences we all share on this board. So, now it's our turn. I want to tell our story. I think we actually agree Ernie. Part of my purpose is to challenge those statistics, to point out that our disease is more complicated than a body and and some haywire cells. I know an average is simplification, and maybe someday we can all tell our individual-specific stories. I, for one, and I suspect you might agree, intend to be another anomoly, to beat the odds, so to speak. I don't expect to live a normal life and I am pretty sure I will die from my disease (something I am still working on to accept), but I want to live and thrive and fight longer than my doctor's expectations. Sorry to stir the pot, but I had to get it off my chest. Aaron

Caregivers of people who passed away are welcome to post, just identify that the person is no longer alive. And don't forget to post age at diagnosis. aaron

Hi All, I'd like to take a poll to test a couple theories that I have about survivng stage IV NSCLC. If you poke around the net, you'll find a lot of sites parroting an average 6-12 month survival rate for stage IV nsclc. I found somewhere that the average age of diagnosis is 68. I think that our age correlates to our length of survival and I suspect that most of us net savvy lchelper's lean towards the younger end of the spectrum, no offense to you old-timers (am I the youngest one on here? not sure if that's good or bad). I also generally suspect that those survival statistics are somewhat dated, perhaps not accounting for better chemo, more accurate radiation, and our new wunder drugs (avastin and tarceva). So, if you're interested, please post the number of months from the date you were diagnosed with Stage IV NSCLC. If you were re-staged to stage iv, please just calculate the months from your re-staging to now. I'll average us up. Allow me to go first. 5 months (August 15 to now)

Thanks Randy for the information, but I've already read everything on it. I wanted to know if any lchelp'ers were enrolled/enrolling in the clinical trial. anyone?

Hey guys, Is anyone in the clinincal trial for the Stimuvax vaccine, also called blp25? I know better than to get my hopes up, but this looks really promising. I think the only way to go with nsclc and similar cancers, at least for patients who have metastatic disease, is with approaches that attempt get the immune system to recognize (and destroy) cancer cells. Looking forward to more innovation. aaron

Thanks Ernie, I've read your story ... very impressive. It seems like I might get a rash. I suppose I could have the doc drop it down a few MGs during my vacations. Thanks for your congratulations on finishin chemotherapy. Honestly, the last 5 months have been THE hardest in my life. I am now in week 2 of my last cycle (#7) and I feel better and better everyday. There's only one way to go from now on. love, aaron

Now that I am pulling out of the fray with the chemotherapy, I'd like to know what to expect when I start Tarceva in a few weeks. Please don't forget to put it into perspective against standard chemo side effects. Basically, I plan on taking my girlfriend to Mexico sometime in March and I want to know what to expect. Also, has anyone had BOTH tarceva AND avastin at the same time? cheers, aaron

had them bad too. thoarzine is awful. try Baclofen.

I am in the home stretch here. Treatment #7 and the last one for a while. For me, it got way worse as the treatments wore on. After the first few, I was traveling, hiking, eating(!), you name it. Now, I am 4 days into my last cycle and I feel like Jeff Goldblum's characcter in _The Fly_. I can't sleep, can't really eat. It sucks. Sorry to be such a downer, but everybody has a different reaction. aaron

I am pretty sure I am "poorly differentiated." I am not sure if that speaks to the grade or what.

I can't say that I am mad because there's nothing I can do but accept it as part of my reality. I am just curious if anyone knows the average rate of tumor growth and metastasis for NSCLC. For example, do you go from Stage IIIA to IIIB in 6 weeks or 6 months? The lawyer might not take the case because he's afraid their defense, that i was probably stage iv in february, will be too strong.

I was diagnosed in August 2006. Staged IV. Back in February, I went to the ER complaining of chest pain. They took a chest x-ray, sent me home. Come to find out, the x-ray shows a nodule. More insult to injury: the radiologist saw the nodule, noted it in his report and no one contacted me. When diagnosed I had/have mets in about 5 places in my back and in my right hip. Given these facts, do y'all think I was probably stage IV in February? Or could I have been staged earlier? Thanks, aaron

Can't help but weigh in here since I feel like ^%$@&* right now. I agree with everybody in general, that its not as bad as it has been made out to be. The first few cycles should be a breeze. Be careful what you eat on that day and the day or two after. I made the mistake of eating of indian food the day after and now just thinking about it makes me gag. A lot will depend on what you get (i got cisplatin/docetaxel) and how much. I was cooking along for the first 4 or so cycles: eating, working, working out, etc. But now, I am about a week into #6 and I feel terrible. My taste buds are burnt ... fried. I can hardly taste anything and food kind of makes me sick (some more than others). Fatigue: get your slip-ons ready and buy another pair of pajamas. Nails/fingertips: watch out for neuropathy. I've found it to just be an annoyance (difficulty opening packages, wrapping, etc.). Mouth sores. Bloody noses. Hair loss. Insomnia. That's about it for me. I have only one cycle left. It makes me so sick I ask my family not to mention "chemo" anymore. Just keep in mind that its cumulative and the beginning will be a breeze. Let us know how it goes. aaron