beckyg Posted January 14, 2004 Share Posted January 14, 2004 There were some positive pats of the trip, and some really frsutrating parts. The good news: I saw my pulmonologist and talked to him about my breathing woes. He said I do need the oxygen right now (I know this--I feel bad when I am off the oxygen) but he did prescribe a nebulizer and soem liquid steroids for me to inhale that way, with the goal of getting me off the Prednisone and onto a lower dose of steroids which would be going just to my lungs. I really like that doctor. MD Anderson was mostly frustrating. First we waited three hours past my appointment time to see the doctor. The he came in and told me about the traditional chemo options that he would recommend. I said I knew about those and that I had come to him because I was interested in clinical trials, which I had told him before. He said then that he had one in mind for me and told me about it. I said I was interested in it, and he left to find more information and came back saying that oops, I do'nt qualify for that because I have had more than one prior chemo regimen. I asked if he had anythnig else for which I do qualify, and he said he would have to research that. So he told me that my options are to go with tradiaitional chemo now; hold off for a month and see what clinical trials open up next month; or I could just not do anything until the new tumors start to cause me trouble. Thanks for wasting my time, doctor. I knew all that. He did however, prove a little useful when I asked about the bone mets. You all know that I have not had a good experience with radiation and I am more than a little nervous about doing any more radiation anywhere near my poor lungs. So I asked him what else could be done for my rib that is bothering me so much. He said that there, they can do RFA on the bone met and at the same time as they blast the tumor, they inject bone cement to set the bone and take care of the pain right away. So that's definitely something worth considering. I just got back home tonight--I have either had a stomach bug or a reaction to the oxycontin, but I have been nauseated and miserable the last couple of days. Today I have finally been keeping everything down--I still don't have much appetite, but it is improving. I guess tomorrow I'll start doing my own research about clinical trials. I can certainly do at least as good a job as that doctor at looking them up. I can eliminate a lot of them for which I don't qualify. I got emotional in the examining room because I do sometimes and I was irriated at him and because I wanted him to have something really great to offer me. He started telling me that only God knows how much time I have and that I certainly have plenty to live for. I said, "I know I have plenty to live for. I just want you to do more to help me do that." Anyway, I knew several of you were anxious to hear what happened. The short answer is that I still don't know hwat is next. Curtis and I will be trying to figure that out soon. I know that the least appealing option is to do nothing until the new tumor start causing problems. Becky Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted January 14, 2004 Share Posted January 14, 2004 (((((Becky))))), Thanks for the update. I will be praying that something comes your way soon! God Bless, MO Quote Link to comment Share on other sites More sharing options...
norme Posted January 15, 2004 Share Posted January 15, 2004 Becky, so sorry houston wasn't more but I have heard over and over that chemo only works when there is a met to work on. Sure hope you find what you are looking for. God bless. Quote Link to comment Share on other sites More sharing options...
jane Posted January 15, 2004 Share Posted January 15, 2004 Becky, sorry about the frustrations at MD Anderson. My sister is treated there and sometimes I'm not really sure that the best care is offered in such a bureaucracy..... they have so many "policies" etc.... although we really do like my sister's oncologist, and she is very positive. The rfa there sounds promising for the rib, hope that works for you. And keep searching for clinical trials.... something is bound to be out there that will help you..... Jane Quote Link to comment Share on other sites More sharing options...
Snowflake Posted January 15, 2004 Share Posted January 15, 2004 Becky, I was SO hoping your trip to Houston would be better than mine... I, too, spent over three hours waiting for the doctor to be told there was nothing they could do for me, odds were it would recur (60%) and that it would happen in the first two years - but not to think that if it didn't recur in two years I was out of the woods as people have relapses after fifteen years of nothing... She sent me home with a "possibility" of an Iressa trial and no further contact with MD Anderson. She advised against chemo OR radiation - my local oncologist also advised against chemo but gave me the go ahead for radiation...AND got me the information on Iressa along with the pills... I guess, in a way, it all worked out. Having to go through treatment in Houston would have put my family in a cardboard box behind the mall dumpsters...six weeks there on MY expense to test THEIR procedures/medications (I didn't qualify) - what a bargain! Mark and I came back from Houston SO disillusioned...I guess we were hoping for an instant cure or something since they're "the best" in the field... My oncologist studied in Houston and at least he knows me by name - and rolls his eyes when I whip out the notebook... I usually have to wait over an hour past my appointment time, BUT, he answers ALL my questions and treats all his patients the same - can't really get upset and go shopping for a new one... Besides, hubby goes with to all appointments and we sit and talk. I hope you can get what you need, Becky. I understand the frustration with the BIG cancer center, been there! (To tell you the truth, it wasn't worth the extra paperwork or tax deduction!) Take care, Becky Quote Link to comment Share on other sites More sharing options...
Fay A. Posted January 15, 2004 Share Posted January 15, 2004 Becky, Thanks for letting us know what happened at MDA. I'm sorry that they did'n't have a clinical trial for you. There is one that Norme mentioned recently, but I can't remember the details right now. I'll go back through the posts tomorrow to find the info. I'm glad that they are going to address the breathing difficulties and the bone pain. Becky, are you willing to travel outside of Texas to participate in a trial? Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted January 15, 2004 Share Posted January 15, 2004 Becky, We all appreciate the report and share in your disappointment. Something will manifest to treat your cancer soon, we will all be on the lookout for you! As always you are in my prayers. Cheryl Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted January 15, 2004 Share Posted January 15, 2004 Becky-I really wish you had gotten the news we all wanted for you. You do have so much to live for-that sweet baby , I always smile when I see your pics. Love ya Cindy Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted January 15, 2004 Share Posted January 15, 2004 Becky, NCI has an information center on clinical trials and treatment options, you could check this stuff out firsthand and see when something new comes up. NCI has a whole office dedicated to cancer treatment information, and is tied into what clinical trials NIH sponsors. IF there is something only at NIH, they pay airfare and hotel (at least subsidize). Check it out. You all are in our prayers. MaryAnn Quote Link to comment Share on other sites More sharing options...
ginnyde Posted January 15, 2004 Share Posted January 15, 2004 Becky, I am so sorry about the run around at MDA. I think some drs. forget that the people they treat are just that - people. I don't know where she found the info, but I know that Ada researched all the clinical trials available for LC and contacted them herself. I wish you a speedy answer - waiting is the supreme torture. I will add an extra prayer for you. Love, Ginny Quote Link to comment Share on other sites More sharing options...
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