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Everything posted by ts

  1. Yesterday was not so good - going to get some more magic juice at the infusion center today. Had to laugh (just a little - I am having swollen ankles for the first time - yes, these have been pointed out to the nurse. My brother was here when this started being obvious. He asked why? I replied, "retaining water?" This a week after an overnight stay to be hydrated! And constant reminders to drink more fluids as I continue to throw everything up. We looked at each other and giggled out loud.
  2. ts

    During treatment...

    Come sit with me during chemo. Kept me occupied and let her see how un-scary the actual day was.
  3. ts

    Sunday's Air

    Hi Judy, Just a short hello from windy and wet Seattle. I think it's time to start my day's current routine. Stephanie
  4. ts


    2011 ended with a bang (no fireworks, no alcohol). Came home from brunch ad crashed on the couch. Just continued to get worse until we checked me in at urgent care on the 22 (had already seen the onc a couple of times.) Stayed overnight to get hydration and iv pain meds. Made it to Monday's lung cancer expert consult and with his help, found at least temporary peace with the decision to go onto hospice. Performance status dropped over those 3 weeks so that the nature of the consult changed. He willingly and kindly gave his opinion - that continuing treatment (including clinical trials) would likely cause more harm than good. I feel a little better, but getting up to date with the program is tiring, to say the least. I haven't really known how to bring this news here. For a good read on the myths of Hospice, please read this: http://cancergrace.org/cancer-treatment ... d-fiction/ and thank you for your support. I'll post as I can manage. Focusing is a bit difficult - still adjusting to the pain meds and all the the rest. Stephanie
  5. Janet - I haven't been to our architectural wonder of a downtown library in some time, but last I was there, there was a coffee cart in the lobby. Well, it is Seattle. I'm not sure what the general policy is, but I think coffee is permitted. Judy in KW - I think I can get away with the EZ tax return this year! Haven't used that in 20 years, but with no earned income... still have a lot of deductions, but I'm not sure they will do me any good. Last year I was completely surprised to get back more than I paid in! Qualified for some strange refunds and stuff, but still had some earned income. Had a chest x-ray on Monday - no pneumonia, so I guess it is just the lc causing back pain, extreme fatigue, loss of appetite, and all the rest. Maybe a touch of flu? We can hope. Not fun days around here. M has a cold, one cat is shredding and being lethargic, the other is vomiting (me too) and both (or the cats and me) are hibernating most of the day and night. Frost fog last night. Pink sky this morning. Chance of snow at sea level starting Sunday.
  6. ts

    Hey Friends!!

    Maybe this? http://cdmrp.army.mil/search.aspx?LOG_NO=BC022345 Congressionally Directed Medical Research Program - Department of Defense funding - same thing that has been keeping Bud busy.
  7. I almost signed on to yell at the commenter who said we are a sick society because of the food we eat, etc...how the heck does she explain 3 year olds with cancer, or star athletes who exercise, eat right, etc...? Makes me mad. Also, to list the great organizations offering support, people to talk with, awareness and education. With an article like that, not offering resources is a real shame. But I did not want to join another site, so shame on me.
  8. Dawn, Just to let you know, a friend of mine has multiple myeloma and has for 10 years. She just got back from a trip and is about to head out for another soon. Sometimes her treatment is rough (especially after 10 years of it!) but in between she runs away and has fun - like swimming in Baja or yoga on the beach. It might not be curable, but it is definitely treatable as a chronic condition. Hope they are wrong about that anyway. Keep on smiling.
  9. 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.
  10. Oh Judy, That's terrible! You appear to have kept your sense of humor - or maybe it's the good drugs? Let them take care of you and get out of that place soon.
  11. UCSC also offered a science class "Biology of the banana slug." (I did not take it.) Each student had to go find a slug and try to keep it alive for the quarter. They made little shoebox environments, kept them fed and watered. Not sure what else (well, maybe I know and don't want to admit it.) I took statistics instead, as well as intro to oceanography and astronomy. Heavy duty science coursework!
  12. I guess it was unofficial from the start: http://www1.ucsc.edu/administration/pio ... ascot.html
  13. Just ducking in to explain to Judy in KW that Diane is probably referring to a football game involving the University of Oregon - they are "The Oregon Ducks". Up here, we are Huskies. My undergrad mascot is the Banana Slug. Seriously. Well, we didn't have a mascot when I was there, but it has been adopted since then.
  14. 2012! How'd that happen? We met friends for lupper (lunch/supper) at 1 and chatted for a couple of hours. Got home and I crawled onto the bed with cat and blanket. Got up a couple times for a few minutes, but basically got up at 8 this morning. Had no alcohol, but still managed to cough hard enough to get a gag reflex and another visit to the porcelain god. But my cold is gone, so that is good. Midnight was punctuated with fireworks and explosive devices in the neighborhood - lots of loud sounds, occasional lights in the sky despite the blinds. Last two sets were around 1:30 - I'm guessing the restaurant workers finally got home and wanted to celebrate. But it sounded like they blew something up, twice. Gray outside, rain unlikely, 42 headed to 49.
  15. Happy New Year's Eve all - we are meeting some friends for a late brunch and I'll call that good for the celebrating!
  16. Unfortunately, the % of people with the EGFR mutation is much smaller. Much. Last I read, 52% in never-smokers, 15% in past-smokers, and 6% in current smokers. But if he has the EGFR mutation, the likelihood of a good response is in the 65 - 75% range. The % for ALK is even smaller - maybe 4%. But the response to Xalkori for this group is impressive. (All my #'s come from studying/reading the blog posts on CancerGrace.org) Most people with either of these are non-smokers (but some smokers have them too.) EGFR is more common in asian women who don't smoke, but I have met a few men with this as well, as well as many non-asian women. I think more men than women have the ALK translocation, but the poster child for the drug while it was in clinical trials is a woman. So nothing is set in stone. Many people progress on these drugs after a short while though we have some members here who have been on Tarceva for 5 and 6 years (about as long as it has been around.) Xalkori only got FDA approval this fall, so long term statistics for it are few, though in trial, I am aware of 4 years before progression (and they are doing trials with new drugs to combat that right now - ones that appear successful!) I got 15 months on Tarceva and am a year beyond stopping that drug. Stage IV lung cancer can be treatable as a chronic illness. There are at least 3 recognized chemo treatments, and a handful of oldies but goodies that can be tried as well as clinical trials. His performance status and how the cancer responds to treatment are far more important than any statistics or timelines anyone can quote. Maintaining weight (eat!) and activity are key. Some will say a positive attitude, but cranky people survive cancer too. The most positive attitude won't necessarily keep you alive, but it make the days go by in a more pleasant way for everyone.
  17. Hi again, I posted this earlier - this is the mutation analysis NIH will probably do when they have the material for a biopsy: "Hopefully, the NIH biopsy will show that he has an EGFR mutation, so that oral Tarceva is a likely candidate for therapy, or that he has an ALK translocation so that Xalkori is a different oral option. Both of these have excellent treatment value in the right patients. Tarceva is an option for 2nd line even if he does not have the mutation, though one would not expect as great a response to it." Those are the two miracle targeted therapies the FDA has approved for advanced lung cancer.
  18. I'm not a doctor, but scanning after two (or three) rounds of chemo is quite common to see if it is effective. If it is not doing any good, they will usually try a different cocktail at that point. You describe your Dad's diagnosis as Stage IV lung cancer - dear one, there is no Stage V. Once it has spread beyond one side of the lung, it is out there and you can hope that the cancer responds well to treatment and that they manage any pain well, but the time has passed to be terribly worried about how far it has spread. I am sorry. That does not mean that there are not treatment options - there are! Hopefully, the NIH biopsy will show that he has an EGFR mutation, so that oral Tarceva is a likely candidate for therapy, or that he has an ALK translocation so that Xalkori is a different oral option. Both of these have excellent treatment value in the right patients. Tarceva is an option for 2nd line even if he does not have the mutation, though one would not expect as great a response to it. Take care of yourself - it takes a lot of strength to be a good caregiver and he needs you now.
  19. 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.
  20. ts

    Monday Air

    Okay, last party is tomorrow. In the oven is a chocolate apricot tart. Like a crumbly cookie dough patted into the pan, a layer of cooked and roughly pureed dried apricots, and more crumbly chocolate walnut dough on top to seal it all up. Hope the kids like it. There will be ice cream. M will cook a prime rib tomorrow. Eric - are you sure someone didn't give herself a Christmas bonus at that ATM? Judy - we will be waiting to hear the report, if you are up to it. Get some good rest. Cat just came glistening. I take it the rain has started - and may not stop for many days to come... G'night all you little elves.
  21. Two hams in the oven for a party tonight (someone else's), biscuits just out of the oven, and our first fire ever in the fireplace (I got the chimney inspected and cleaned this fall and M surprised me with some logs last night.) May all your wishes come true.
  22. ts


    Eric - next time you are in Seattle - look what just opened: http://seattle.eater.com/archives/2011/ ... allard.php Merry Christmas.
  23. ts


    Morning friends, Went to a party last night - a friend turned 50, the punk. He brought in food catered by a local taco truck - so much food and very good (though I ate little - it was already 7:30.) Was chatting with a stranger who asked if I was working...no, on disability...may I ask why? ... Lung cancer...turned out her Mom survived lung cancer 16 years ago and now is in treatment for uterine cancer. Dang. She and M had a nice long talk while I got up and visited with other friends. Everyone was so pleased to see me looking so well. Nothing like spending the afternoon napping, having a hot shower, a cup of coffee, an ibuprofen, and new jacket (yes, from Sicily!) to make a girl look good! We ended up staying for almost 3 hours. Did not talk to too many strangers, but there were enough old friends that I had not seen for a few months. We go back to '85 or '86. Not bad. Oh, and one of the guests played piano, even in the dark, no music in front of him. And some of the guest went out in the freezing night and did some lawn bowling. Nice venue.
  24. ts

    Thursday's Air

    or this, quite similar: but really small - I can do better somehow, I think.
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