spicysashimi

Raney, Great news. Keep on it. I got a good pet scan too. We're on right track. aaron

Go Rich!

i had it BAD on tarceva. take the immodium. take a probiotic. eat yogurt, bread, applesauce, stuff like that - carbs. eat a salad - fugggghetaboutit. aaron

Bill, Hope all is well. Take care of yourself. aaron

You guys are incredible. I've been meaning to write a post in the "good news" section and tell y'all i'm engaged and you beat me to it. Your replies make me feel like part of a family here at lchelp. Isn't it nice to have a big event NOT related to cancer once in a while? Julia's incredible and even though she has never posted here, she reads about everyone on this site regularly. aaron "killing cancer one cell at a time"

hi all, i am ok. thanks for your concern. I am on this two-week trial, which leaves me feverish one week and I feel so good week two, I just can't sit down and use the computer. I am in the "bad week" now trying not to move in an superstitious attempt to avoid a fever and thus getting admitted. i hate the hospital. i hope everyone is well and I hope to check in more often. best, aaron

hi neil, i am on a clinical trial with alimta and gemzar every two weeks. I think the first cycle worked, because my pain disappeared, (although, now, at the end of the second week, its starting to creep back). Its fairly tolerable. tarceva had no effect on me, other than mad diarrhea and rash. Houston has a great looking phase 1 trial i will post about in the near future. aaron

Hey buddy, Glad to hear you're out. Get your strength up. aaron

Hi, i put the patch on my back just right above my shoulder blade, but by the second day, the sides were peeling up and I wasn't getting any pain relief. Anyone have ideas on the optimal spot for these things? I was thinking the middle of my lower back (not a lot of movement). Also, have you used tape to keep it down? cheers, aaron

Hi, I was reading in this book about supplements that, for example, curcumin is not metabolized effectively throughout the body. The authors suggesting taking a proteleaic (sp?) enzyme, something like Wobenzynme or Zymactive to help process these supplements and better distribute them throughout your body. Heard of this? aaron

Carol, They think that the folic acid reduces some side effects from the alimta. I have to get shots of B12 too. aaron

I guess this is Plan C. Plan B would have been Avastin/Tarceva, but in the words of my doctor "they failed at keeping the cancer at bay." I've been on tarceva since the end of jan. I asked him if it just needed more time to show effect and he was definitive that it would have shown by now. I guess I just have to get over my hopes of a prolonged response on a targeted therapy. Doc seemed to suggest that there were no new spots, only old ones that have come back. He said he couldn't find a trial testing a drug that looked promising. So, we're going back to my friend, everybody's friend, that good 'ole standby: chemotherapy. YUCK. But this time, instead of Cisplatin/Docetaxel I'll be getting Alimta/Gemcitabine, which, according to all the professionals will be much lass toxic than the "doce-cis". That's good news. But is it as effective? I hope so. This is actually part of a clinical trial (testing the combo), but there's no placebo involved. That means I have a new nurse (I liked my old one), and I have to do really silly stuff, like sign a calendar attesting to taking Folic Acid everyday. They also put me on a fentanyl patch, which, according to them is better than taking oral pain meds intermittently. I hope it doesn't fall off. Anyone taken these two chemo drugs together or individually? If so, how was it? Nausea? Fatigue? Hair loss? (mine is just now coming back!) aaron

Sounds good Ernie. Who knows? You could have that subcentimeter spot for the next thirty years. Nothing to get discouraged by here. aaron

Hi Raney, I hear you on the movement thing, sometimes I feel like going out for a walk at 4 in the morning -- on reflection, why shouldn't I? Wendy, Interesting that Maurice is on the same meds as me (avastin/tarceva). I am inclined to believe its treatment related since before February when i started this cocktail, i never had pain in those areas although I did have disease there. Its 1:30 a.m. now, and it seems most of it has subsided, I've been drifting away on the couch. Thanks for your ideas. aaron

Hi everyone, This is night #2 in a row where I couldn't get any sleep because I was in so much pain. It is localized around either my lower back or my tailbone. It can get really nasty making me uncomforatable and irritable. I popped a handful of percocets last night which, although provided some relief, strangely kept me awake I think. Went to work today and it still didn't subside. I know if I ask my doc, he'll just say take more pain pills. Curious if ya'll have had any success in relief doing other things, like hot/cold packs, stretching, baths, sleeping positions, etc. I'm not too crazy about just increasing my pain meds. More about my pain - its definitely bone pain. I think it is aggravated if i exercise or walk a lot, because one day recently I went for a jog and was hit with a nice painful surprise when i got home. Another feature is that it is not constant, its intermittent usually only lasting 3 or 4 hours, but boy, can it be INTENSE. Also, I've recently had an MRI of that area, and while there is cancer there, there is no noticeable progression from time of diagnosis despite the increase in pain. In other news, Julia's vacationing in sunny Mexico with her mom and sisters leaving me all alone, so I am treating myself to a cheesesteak - delivered, to boot! all my best, aaron

i'm on both. fun fun fun.

I'm on both: tarceva and avastin. Doc told me that there is a trial but said he'll just give me both outside of the trial. As for avastin side effects, I have a runny nose - not sure if its the avastin. I have way more side effects from Tarceva. Avastin is cake. ap

Tanner, Hospice seems premature. She's young and presumably has a good performance status, why won't they go to second-line chemo? I also think you should give the tarceva another few weeks, unless you think she is danger of declining rapidly. sending my best, aaron

Do the Probiotics have to be refrigerated? I just bought a bottle for 20 bucks. I also bought ginger tea. Stomach still upset. Diarrhea still present. I am suspending antibiotics for a few days and I think I'll ask the doc for a topical antibiotic. Assuming the antibiotics are aggravating the stomach, this should work. aaron

Thanks everyone. Lots of good ideas. I am going to definitely try eating yogurt, my shrink had the same recommendation. And I am experimenting with a lot of supplements (coriolus, b complex, selenium, co-q-10, etc.), so I might as well add a probiotic. Welthy and SuzyQ: Actually, I do have yeast problems in the form of ... er ... jock itch. Wasn't gonna mention it but we're all family here, right? Kept under control with micanazole nitrate. aaron

Hey everybody, Things are moving along (literally). Between the Tarceva and the oral antibiotics I take for the rash I have had the worse bouts of diarrhea and upset stomach. I've started taking two immodium capsules every morning and night and chugging on maalox or pepto throughout the day. I'm working now and its becoming difficult to effectively represent my client when my stomach is twisted in knots and I have to run for the bathroom every hour. Any tips/tricks from fellow LCHELP'ers? I am trying to eat lost of plain carbs (bagel with cc for bfast, noodles for dinner, etc.). In other news, I am almost pain-free (still a couple dings in my lower back and butt) and my hair is starting to grow back! Its noticeable on my beard which has been non-existent for the past 5 months. And there are millions of little new hairs popping up in my eyebrows. Scalp is lagging behind, with minimal growth. If I can just get this GI thing under control, I'll be pretty darn close to feeling normal. aaron

I'd do another round. This time, try doubling or tripling your water intake. It worked like a charm for me the last time and made me feel so much better. best, aaron

I took it. Hard to say what it did (separating it from other things).

its one of the categories you can post and read off the main message board webpage.

updating in test time section.