spicysashimi

Hi Robin, This is very similar to my current concoction. Some pretty heavy duty stuff. It should work (it better work!). Just be sure to monitor the side effects closely and watch out for Reflux! aaron

Hi Karla, Welcome aboard. For what its worth, I had Cisplatin and my tumors responded shrinking about 40%. Good for him going to work. Sounds like a fighter. If this first scan isn't what you were hoping for, just be patient. best, aaton

I am getting 6 for Cisplatin/Docetaxel w/ Avastin. They won't go past six usually, I think because they think it stops working and/or "permanent" side effects step in. But the typical 6 cycles wouldn't prevent your husband from getting more down the road, but, I think, it would have to be different drugs.

Hi Bones, Sorry to hear about your diagnosis. I too had to wait. But in retrospect, those were good times. If you feel good enough, throw a party (that's what I did), or do all kinds of things you've been meaning to do (vacation, mueseums, visiting family). You might not have the energy to do these things once you start treatment. I would not be in a rush to start treatment, as I am sure you can expect gross chemotherapy. Get together with friends and family and start shoring up support. Good luck and cool name by the way, aaron

I would also tell them to get a big enough piece that will allow you to create extra unstained slides to send off to other places for a 2nd opinion. You're just going to have to be patient with the diagnosis. I wouldn't get too wrapped up in their names and categories. Keep in mind that one important element, an element they can't measure, is the strength and reslience of your mom. Good luck, aaron

Thanks to all who responded. I may be in touch with my feminine side, but I am not yet ready for the brow pencil, although I have been known to borrow a smidgen of Julia's makeup to cover up an unsightly pimple on a big day. Mary, I am doing well. Thanks for asking. My window of good days has shrunk to about 5 every three weeks and this is one of those 5. I am ingesting as much good food and good wine as I can handle before i get poisoned on Monday. From all your responses, especially Nina's who was on the same cocktail, it looks like I am looking at April/May at the earliest if my treatment ends January 8. And you're right, its much harder for women. Bald is beautiful.

One day, I was cruising along fine. The next, I look like an overgrown newborn. My eyebrows are almost gone. My hair is now just peach fuzz. I never thought it would matter to me, but now that I don't have it, it kinda does. Having hair, I think, would help me feel more normal again, especially eyebrows. I have to go to a wedding this sunday and see a lot of people that i haven't seen since my diagnosis. I am feeling uncomfortable about it. I feel "marked." Does anyone else know what I mean? My last chemo is 1/8/06. How long has it taken for your hair to grow back after you stopped chemo? keep fighting the good fight, aaron

Joan, It looks like you live on "the island," so i assume you want a new york state permit. http://www.nyc.gov/html/dot/pdf/nys-pppdapp.pdf if you want a city permit, here's the link: http://www.nyc.gov/html/dot/pdf/nyc-pppdapp.pdf *the state permits won't give you disability parking in the city. you'd have to get both. aaron

Should I feel guilty asking my doctor to sign the form? Some days, (chemo days, neutropenic fever days, etc.) its difficult to walk to the subway. \ I would have to meet with a city doc. Should I expect resistance? I got bone mets in my back and hip. I could really use this thing. aaron

Hi Wiesia, Don't get all freaked out about "bone mets" I've had them on my collarbone, throughout my back (T1, T11, L2, etc.), and my hip. The tumor on my collarbone is gone and the others are shrinking and bothering me less. Its possible for cancer to regress no matter where it is (brain, bones, liver, etc.). What's more important is getting the right diagnosis, the right treatment and the right attitude. Tell your dad I said: "Powodzenia!" aaron

They say I will probably be going home tomorrow morning. My WBCs and Nutraphils are almost there. I also got unhooked and relaxed on the terrace with my girlfriend, sister and friend. Things are looking up. Thanks everybody. It was good to be connected to lchelp throughout this. aaron

Admitted. WBC - 2.0 yesterday and nutraphils (ph?) were 200. Today, WBC down to 1.7. WTF?!? I haven't had a fever since I got here and they got me on antibiotics every 6 hours. I am really tiring of the constant IV fluids, so with the help of a friend, I disconnected myself and bolted out of my room for the patient rec room. Pissed off my nurse. They want you to just lie down and take everything. She told me that my doctor's orders were 24/7 IV fluids. I told her "I'm refusing them for the next half hour." It feels good to be unattached. And, surprisingly, the rec room is awesome - sun, terrace, foosball, internet, board games. I could be in here a week. I am going to check out the Neutropenic menu tonight - beef ragout! In the meantime waiting for bloodcounts to rise again. Thanks for your thoughts and prayers.

goin in as per my onc friend. "The possibility of being neutropenic is dangerous." I hate the #$^^@'ing hospital. May have to be admitted. Argh.

Tried another thermo. 100.7. Shoot. Guess I'm going to urgent care.

They came yesterday after work. Body aches throughout body, fatigue, chills. Today seems worse. It feels exactly like a high fever but thermometer says 98.3. What's up? I haven't had chemo for almost two weeks. I usually feel ok at this point? I get whammied somehow. The only thing I can think of is I ran out of my special supplement - Coriolus. Bought some more today. Calling doc. aaron

In the long run, I think its better. Does anyone like getting stuck in the arms all the time? To be honest though, sometimes it makes me sick, especially after chemo, I want to rip it out and smash it with a sledgehammer. If the stars align for me, I would cherish the day it would be removed. And yeah, I wasn't asked. It seemed like standard procedure. I had this crazy good interventional radiologist who just prided herself on her skills. She was definitely more of a surgeon. She had short spikey hair and a matching zebra apron and mask (not kidding). I went in for a core biopsy and a port. She said they usually don't two at once but will for me. "I'll tell you what, I'll do the biopsy and if your lung doesn't collapse, I'll put the port in, ok?" Ha. I was blowin blood out of my nose after the biopsy, she slipped the port right in. What an awful day that was. Get the port and good luck.

Teresag is right about the laws. Frankly, I find them totally absurd. They didn't think twice when prescribing me oxycontin and ativan but marijuana?! No way. Your head will rotate 360 degrees and green ooze will secrete from your ears. Don't touch that stuff, just pop some hillbilly heroin (ocycontin). I'm a criminal defense lawyer. I know the risks (its not really anything in new york city) and I'm taking them in a futile attempt at political resistance. Maybe we can try to get decriminalization in new york with Spitzer coming in and all. I mean, what an awful PR move: to put some bald, pale and thin cancer survivor in cuffs for marijuana? That would be great for us actually (us = the decriminalization people). Funny thing is, I am not sure marijuana is for me. I get paranoid and a little delusional (not good for a stage IV!!! you hear me?). Anyway, I would be honored to represent any cancer survivor prosecuted for marijuana. If you're in New York and are worried about what can happen, private message me and we'll talk about the scenarios.

pre-diagnosis, he could have just been feeling like crap. I thought I was "asymptomatic" but the more I thought about it, the more I realized that my body (and maybe mind) was comprimised in some way. For the 6-12 months prior to diagnosis, I had amassed an extensive collection of zinc lozenges and cold medicines. Point is, the cancer may have made him felt bad. post-diagnosis, well, shoot. You got the too-much-to-bear anxiety, the chemo, all the other drugs, etc. Take your pick. At restaurants these days, I have the grace of a six year old ("I want food. Please bring it to me.") I ain't no doctor, but a brain MRI, I think, is pretty definitive. Of the diagnostic scans we're all used to by now, MRI's are probably the most precise. If the radiologist says "clear," I would accept that unquestionably. Incidentally, since I am paranoid of brain metastases, and because I've had a weird twitch in my temple that pushes my jaw back and forth, I've asked about the symptoms for brain metastases. He would experience problems with vision (blurred, double, etc.) and headaches. Again, I'm just guessing here but I don't think he'd necessarily have problems with cognition. Let him know he's got friends here. aaron

Hi guys, Thought I would post since this is a good example of my insomnia. Its 6am, Sunday, I am up eating oatmeal and on lchelp and Julia, my girlfriend, is fast asleep (and will be for hours). We live in new york so our space isn't that big or private(its a railroad apartment) and the tv is in the bedroom. Anyway, wide awake. I decided to make oatmeal because I always feel like it helps me sleep when i eat something, even though, i am not enjoying this at all. As for the prescribed drugs, I've tried everything: xanax, ativan, ambien and even restoril (for hardcore insomniacs). I am afraid I take the ativan too often so I've developed a tolerance. I guess I'll try Ambien again. Deep down, I know the real problem: I don't exercise, I just lay around watching movies. My body isn't tired. Maybe today, Jules and I will go on a walk. I chose not to eat brownies last night, not because I didn't want the drug benefits, but because I didn't want to eat anything. Incidentally, have y'all experienced something like a phlegm ball (gross, i know) in the back of your throat that just kind of sits there? That seems to be part of my appetite problem. ahh ... who am I kidding? I'm on chemotherapy, some of the most toxic substances known to man. I really like the idea of milestones and rewards for when i finish chemo. New motorcycle? Vacation? Massage? Keep up the good fight. aaron

I forgot to add that I would never smoke it, just ingest it in baked varietals (brownies, space cake, etc.)

It was bound to come up, wasn't it? Any of y'all use it? If so, for what symptoms? One of my major problems is insomnia. My mind can't stop racing. I've found it useful for that, but I've also recently considered as an appetite enhancer. Have any of you experienced a decreased interest/pleasure in food because of chemo? It kind of zaps your taste buds or something. I hate it because I'm a food (and wine) snob and its one of my favorite things in life. I hope that the taste buds and appetite regain after treatment ends. best, aaron

Thanks everyone for your reply. I only have a little over a month to go. To all of you who have done it, I salute you. aaron

I am in my 5th cycle. This time I got the reflux under control, so its just plain old chemo affect. For those of you who have travelled this road before, how good does it feel to stop chemo? I can't stop thinking about my last treatment date and how my body will slowly recover. Hope you had a good thanksgiving. aaron

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

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.