lisaRN Posted September 26, 2004 Share Posted September 26, 2004 WOW! What a week.... Monday we saw our oncologist , who had been on vacation for the last 2 weeks (which seemed like an eternity). My husband was not doing too well on Monday, had pains in both legs, not sleeping at night, increased sputum production with a fair amount of blood and still some odor to it.... The doc looked concerned when my husband told him that the sputum seemed to resemble the taste of his previous meals....a fact which he had not revealed to me until we were in front of the doc.... So anyway he ordered a CT SCAN for Thursday so he could determine 2 things....1) Is the Iressa working? ( he's been on Iressa for 4 weeks) and 2) Could there be a tracheal/esophogeal fistula? (is there a hole between the trachea and esophogus?) Needless to say Monday was not one of our best days.... Tuesday...... we flew to Dallas, TX to meet with Dr. Nemunaitis re: GVAX, a clinical vaccine trial that is going on at Mary Crowley Medical Research Center. We had a tough flight. There were 2 little kids behind us jumping on the seats, hitting my husband in the head, pulling my hair, taking my husbands pillow from under his head.... they were disturbing everyone around them, not just us.... the worse part was that the mother was not appologetic for their behavior and made no attempt to keep them busy or even in their seats....the flight attendant had to return one of the kids several times to their mother when the kid was wandering down the aisle toward the front of the plane without supervision, even when the seatbelt sign was on.....when the flight attendant suggested the mother strap them in, she got angry and said that they would have more room in their own seats if my husband and the guy sitting next to him would "keep their seats in the full upright position.... (I am not kidding)...Anyway Tuesday was FUN .... it's a funny story to tell at least Wednesday we met with Dr. Nemunaitis..... the nicest guy you ever met... we were a little disapointed b/c you have to meet strict criteria to get into the GVAX trial.... you need to have tumor or an affected lymph node that is easy to remove and can be taken without general anesthesia.... it's one of those things where you dont wish you had aother tumor, but if you have to have any, why cant they at least be in easy to access locations.... well of course we all know tumors do not work that way and they certainly seem to have a mind of their own.... (you can also use the fluid from a pleural effusion to make the vaccine.... of course we dont have that either..... and even if you do have one, they need 600cc of fluid) Dr Nemunaitis did speak of another trial that is coming in a couple of months though....where you dont have to take the tumor from the patient....the vaccine is instead manufactured 100% in the lab.... Anyway we flew back home on Wednesday evening.... no kids behind us... but not at all impressed with the airline.... My favorite is Delta Song...they have sattelite tv's in the back of every seat and you can play trivia games on them or rent pay per view movies.... Thursday.... Had Ct Scan done.... Friday ... returned to oncologist at home..... I expected that he would say the Iressa wasnt working....after all nothing else has worked until now.... why should Iressa? the docs have said Iressa usually works best in Japanese women non smokers with adenocarcinoma and even then, it only works in about 10% of them.... Well my husband is NOT A WOMAN , and no he is NOT JAPANESE , HE does NOT have ADENOCARCINOMA (he has squamous cell) ..... the only thing he had going for him in this scenario was being a never smoker according to the docs.... but our onc said, Iressa is just one of those things.... you never know.... Well at our appt Friday, prepared to hear about progression, our onc said that the final reports from the CT wont be back until monday but...... it showed OVERALL IMPROVEMENT in the chest..... !!!!!! ?????? !!!!!!! Now at this point, we PROCEED WITH CAUTION....after all I remember way back in the beginning of May after only 2 weeks of radiation and one dose of Carbo/Mitomycin/Navelbine that the docs at yale said the tumor had shrunk 30%.... by the next CT SCAN we not only had progression but bone mets..... So.....I am being cautiously optimistic ....I mean we didnt think this would help at all given the odds and we were praying for stabilization.... improvement is more than we could ask for.... I am extremely anxious to see the report on monday.... also no mention yet as to whether or not they see a fistula.... His onc made a comment on Friday that my husband confuses him because he had just seen him on Monday and he looked "lousy" and yet on Friday he looked "great"... I told him he changes from one day to the next.... we never know what tommorrow brings.... speaking of tommorrow.... we will see what the CT report brings... WITH EVERY DIFFICULTY ~ THERE IS RELIEF...............LISA Quote Link to comment Share on other sites More sharing options...
Bill Posted September 26, 2004 Share Posted September 26, 2004 lisaRN Posted: Sun Sep 26, 2004 12:23 pm Post subject: It all happened in a WEEK.... -------------------------------------------------------------------------------- WOW! What a week.... OVERALL IMPROVEMENT in the chest..... !!!!!! ?????? !!!!!!! ////////////////// Congratulations on the good news. You also state that ... " the docs have said Iressa usually works best in Japanese women non smokers with adenocarcinoma and even then, it only works in about 10% of them.... " Do you happen to know if there are any clinical studies or any related treatment documentation to support this claim ? Thanks much for any input. Quote Link to comment Share on other sites More sharing options...
Elaine Posted September 26, 2004 Share Posted September 26, 2004 Bill and Lisa This might be a helpful article: http://www.genomenewsnetwork.org/articl ... r_drug.php Quote Link to comment Share on other sites More sharing options...
lisaRN Posted September 26, 2004 Author Share Posted September 26, 2004 Hi Bill, We actually went to Dana Farber a couple of times for second opinions and they gave us some literature of clinical trial results including some trials conducted by Japanese scientists..... Dana Farber in conjunction with Mass General have done groundbreaking research to isolate a genetic mutation which could explain why Iressa works better in some than in others and are now working on developing a test so that local oncologists could test their patients before giving the drug.... I will try to scan the documents I have into the computer later tonight.... and I will try to either post them or email them ..... (we will see how smooth my technical skills are with regards to the scan....more than likely I will need to recruit a teenager....good thing I have one ) The following though, are a couple of news links that elude to my comment as well.... hope this helps....let me know http://www.fresno.networkofcare.org/aging/news/detail.cfm?articleID=5017 http://uttm.com/stories/2004/04/29/health/main614815.shtml http://www.ipphila.com/index.cfm/fuseaction/news.detail/articleSectionID/2/articleSectionTitle/IP%20News/articleID/418/HCSID/13 WITH EVERY DIFFICULTY ~ THERE IS RELIEF...............LISA Quote Link to comment Share on other sites More sharing options...
gail p-m Posted September 26, 2004 Share Posted September 26, 2004 Wow, that was quite a week! I'm glad it ended on a happy note and hope it keeps going uphill. Gail P-M Quote Link to comment Share on other sites More sharing options...
NellW Posted September 26, 2004 Share Posted September 26, 2004 Well that was quite the roller coaster! Praying for good results tomorrow, and glad you have a good note to sleep on tonight! Quote Link to comment Share on other sites More sharing options...
Don Wood Posted September 27, 2004 Share Posted September 27, 2004 Glad to hear the good news, Lisa. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted September 27, 2004 Share Posted September 27, 2004 Sounds like you had one of those nerve-wracking, sleepless, what next weeks. Glad it ended on an "up" beat. Let's pray that it continues. Love, Peggy Quote Link to comment Share on other sites More sharing options...
paddy Posted September 27, 2004 Share Posted September 27, 2004 So glad to hear the encouraging news Lisa! As for those "kicking kids", I don't know how you kept your patience. Paddy Quote Link to comment Share on other sites More sharing options...
kate1621 Posted September 27, 2004 Share Posted September 27, 2004 Holy cow, what a week. Glad to hear it ended on the up note. Kate Quote Link to comment Share on other sites More sharing options...
SJAS Posted September 27, 2004 Share Posted September 27, 2004 Just another week with lung cancer, eh Lisa Glad you got the good news. I knew about Iressa and the non-smoker, adenocarcinoma, female part, but the Japanese was new to me. Like my husband's onc told him, we can't do anything about the female part... but at least you've got two out of three. Don't think I'll share this with him! Quote Link to comment Share on other sites More sharing options...
Melinda Posted September 27, 2004 Share Posted September 27, 2004 Elaine and Lisa--Thanks for the links. Lisa--"cautiously optimistic" sounds GREAT to me. I hope you are given reasons to delete the first of those two words soon. Melinda Quote Link to comment Share on other sites More sharing options...
DollyPardonMe Posted September 27, 2004 Share Posted September 27, 2004 That is good news. Anytime you get good news with this disease is time for celebration. May the good news continue on today. Good Luck and God Bless. Quote Link to comment Share on other sites More sharing options...
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