Patti B Posted October 13, 2008 Share Posted October 13, 2008 OK, so today I went to the onc. As some of you may know, I had showed a tad bit of progression AGAIN in my lymph nodes even after being on Tarceva for 7 weeks. He had told me last week on the phone he had to take measurements and then would decide if I stayed on the Tarceva or not. So he walks into the examining room and asks how I am and I said well, I am very disappointed that I have had two scans with progression. He very quickly yelled that he doesn't think thats a huge deal. My lung tumors have not grown, there are no new mets anymore and both scans the nodes only increased a very small amount. So he told me I had two options. I could stay on Tarceva and also add Avastin. I was on Avastin a while ago and did well with it and I guess there are new studies showing this doublet works pretty good. He finds no problem with the fact that I finally had progression on Avastin since that was over a year ago. The other option would be to go to Navelbine. He really wants me to try the Tarceva/Avastin regimen because that way I do not take another option off the table. Altho he did reassure me that there would still be more options after Navelbine. He told me "I am not going to sit here with my head in the sand on this. I will give you a scan early in 6 weeks and if there is anything at all I don't like, I will take you off both of them so fast it will make your head spin". So I finally did agree to it altho of course I am worried whether I made the right decision or not. So they took me downstairs and gave me a treatment of Avastin. I was feeling pretty comfortable with the whole appointment (Dr. Mekhail and I had gotten into quite a tiff last time I was there) and when I got home I decided to look at the copies of the scans I got. Sometimes they have measurements on them and sometimes they don't. I wanted to see how small the increase was. Unfortunately, there were not measurements on the report but if did say that since my last scan......QUESTIONABLE MALIGNANT PLEURAL EFFUSION!!!!!!!!!! What the ............ Why was there no mention of that today?? He gave me the report, did he not think I would read it???????? So tomorrow I will call my PA because I can talk to her easier that the doc. She will give me her "thats why we don't like giving patients copies of their scans" lecture and I don't care if she is my cousins best friend I may have to remind her that this is not a pimple on my butt we are dealing with. Maybe I would have done some more thinking on what to do next if I had known this......GGGGGGGGGRRRRRRRRRRRRRR!!!! Is it too much to ask docs to treat us like we have half a brain. I will keep ya'll updated on my talk with the PA tomorrow. I guess now this will screw up my coumadin level AGAIN. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
shineladysue Posted October 13, 2008 Share Posted October 13, 2008 Ok Ms Patti, I was reading along and feeling comfortable with the Tarceva/Avastin thing and check in 6 weeks, but yessssssss where did this Pleural Effusion come in? Can't believe he didn't mention that, but don't panic until you get the facts. Bless your heart, I've been waiting for this today and I"ve been wringing my hands with you. Hang in there girl and know that we are hanging with you. Please let us know what the Sam Cookie is going on when you find out. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
RandyW Posted October 13, 2008 Share Posted October 13, 2008 (((((((((((((((((((((((((((((((Patti)))))))))))))))))))))))))))))))))) I always give big soft hugs Ya know!!!!! And Quiet Prayers also! Quote Link to comment Share on other sites More sharing options...
SandraL Posted October 13, 2008 Share Posted October 13, 2008 Hey there. Well at least you know exactly what is going on now. And have a plan. The pleural effusion comment is maddening though I agree. Glad you finally got conclusive results and a treatment plan. Take care Sandra Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted October 13, 2008 Share Posted October 13, 2008 (((((Patti))))) Like Sue, I have been waiting to hear from you today and wow.. I DO like the thought of staying on the Tarceva and adding the Avastin. You did so well on the Avastin alone, this just sounds like a good plan! As for the plueral effusion; I don't know why he did not mention that and address it but I KNOW you will be addressing HIM with it! omg as if there are not enough things to worry about.. I think these doctors just assume that the patients are all as educated as they are sometimes. Hang in there sweetie.. overall this does not sound HORRIBLE and you are on top of things which is great. Hugs Chris Quote Link to comment Share on other sites More sharing options...
jaminkw Posted October 14, 2008 Share Posted October 14, 2008 Patti, I came looking for your results like Sue and Chris. I was also really pleased with the Tarceva/Avastin combo since I just read an article by Dr West reviewing the latest research on it. It sounds promising. I don't understand the questionable malignant pleural effusion at all. I had a malignant pleural effusiion and there was nothing questionable about it. Don't understand how the event could be questionable. Hopefully Ned may check in here and shed some light. He knows about pleural effusions as well. We'll wait and worry with you again dear. Judy in Orlando Quote Link to comment Share on other sites More sharing options...
recce101 Posted October 14, 2008 Share Posted October 14, 2008 Patti, I like the idea of another scan in 6 weeks. Sounds like your onc is on top of things and doesn't want to dump a well tolerated treatment prematurely. Since he looked at the scans he's probably discounting the radiologist's "questionable malignant pleural effusion" comment. That's an odd bit of phrasing, especially the malignant part, since I don't see how anyone could infer that from a CT scan. Will be interesting to see what the PA says. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Flyman35 Posted October 14, 2008 Share Posted October 14, 2008 Patti,Patti, Patti!!! I think overall this is not such bad news. I will be awaiting word on what the PA has to say. (((((Patti))))) Denise Quote Link to comment Share on other sites More sharing options...
Renate Posted October 14, 2008 Share Posted October 14, 2008 Hi PAtti, Since I did not hear from you for some time, I thought I should check here to see if I can find something about you. I can imaging how made you must be at the Doc. not telling you the whole story. Thank God you asked for the report. I do not know what it is " Pleural ..." Will see if I can find out on the Internet. Missed you, warmest hugs, Renate Quote Link to comment Share on other sites More sharing options...
carolhg Posted October 14, 2008 Share Posted October 14, 2008 Patti, Indeed your doctor should certainly have given you that information, if for no other reason so that you do not get upset when you read it yourself. I am praying that all will work out well for you. Hang in there and keep on being assertive, after all it is YOUR health care! Carol Quote Link to comment Share on other sites More sharing options...
jaminkw Posted October 14, 2008 Share Posted October 14, 2008 Ned, thanks for chiming in on Patti's mpe. My feelings exactly, how could they determine this from a CT scan? Hang in there Patti. Will be at the hospital today but will check in on you tonight. Judy in Key West Quote Link to comment Share on other sites More sharing options...
Dollfinn Posted October 14, 2008 Share Posted October 14, 2008 Patti~ I'm on the side of the radiologist is paranoid or got yelled at last week! As far as the Pleural effusion goes, hope your PA clears that up. I had Navelbine last year and it was successful, beware of nadir ask if neulasta is helpful with staving that creepy monster off. I had 3 rounds of avastin this summer and was taken off after 3 months of my power port insertion site not healing, I went off the avastin and poof! all healed. keep that Grrrrr in you, I think it is medicinal. Will be watching for your posts. Mary Quote Link to comment Share on other sites More sharing options...
Patti B Posted October 14, 2008 Author Share Posted October 14, 2008 Well, heres my update after talking to my PA this morning. We had a VERY long chat on the phone. In essence, I have known that I have a "tiny" right pleural effusion since the beginning of all of this and it has never gotten bigger and so they opted not to do anything with it. According to the report, this possible malignant one was listed as an additional one. Tara looked at the films and said NO, they are still referring to the old tiny one and that some radiologists "cover their butts" and recommend checking into them just in case. As she said, it is too small to do anything about, and there is possibly some cancer cells in there - since I have LUNG CANCER. But this would NOT change my treatment plan in the least bit. We talked again about how she feels that this is why they are sometimes reluctant to give out reports. I told her that I feel I MUST be proactive in my own life and that its my right to have them and that since Dr. M. knows how I am, he should have never just given me the report which showed something new MALIGNANT (because that is how the report reads no matter what Tara says, I have a copy right here) and left the room. So she went on to cover their butts and I just told her over and over that I will NOT stop asking for these reports. Shes my cousins best friend and I am sure she went right down there to the chemo room screaming about "your cuz". Too bad. She did suggest, however, that I should demand that Dr. M. in the future give me the report in the beginning of the appointment and go over it with me word for word BEFORE I leave the room. She even told me I could have him go over the films with me. I told her that won't tell me anything since films are confusing to me but just going over the report was a great idea. I have always trusted him that he was telling me whatever the report said and really never thought to go over it with him word for word. So I did land up making nice with the conversation letting her know that I realize Dr. M.s time and hers are valuable but that my "time" is precious to me. She did soften then and explain that she was really sorry that I was so worked up all night about this. And I promised to try to look at the glass half full (i.e. if Dr. M. wasn't worried about it then why was I) instead of half-empty.Thats what she told me and I had to bite my tongue because I had already been a little rude to her. But I did stand up for all of us and remind her that things DO slip thru the cracks even with the best hospital and professional people and thats where I need to be my own best advocate. Then she tried to kiss up by explaining about this new thing with Avastin added to Tarceva and it seems to be helping people a lot. So I feel better today.......I am sure Tara is not......I think I can hear her banging her head against the wall Hugs to all - Patti B. Quote Link to comment Share on other sites More sharing options...
shellit74 Posted October 14, 2008 Share Posted October 14, 2008 Oh Man Patti, What a day you have had. BUT GOOD FOR YOU GIRLFRIEND!!! You stood up for yourself and although it may make you feel a little bad a first, hopefully the message got through that yes they may be busy people, but the patients deserve quailty time with their docs and should be told everything they want to know. I can't believe that your Doc doesn't go over the films with you, or even give you that option for that matter?!! Dad's doc always had the films ready with a printed copy of the report for us to take. Hang in there girl, your doing a great job!!!!! Shelli Quote Link to comment Share on other sites More sharing options...
Dollfinn Posted October 14, 2008 Share Posted October 14, 2008 My 'new" Doc puts my new Ct scan on his screen with the previous scan beside it! At 1st it looks like the kids sonogram reports, but now we can see the changes. I never get the written report. I think for chits and giggles I'll ask for the report on the 20th. Go Patti! Go!! Mary Quote Link to comment Share on other sites More sharing options...
shineladysue Posted October 14, 2008 Share Posted October 14, 2008 Patti, I feel better about this and I think this means that over all your results werent that bad. There sounds like a lot of new hope with the Tarceva Avastin combination. Can you do coumadin and Avastin? I'm sure you have checked on that, but I always thought that Avastin could cause bleeding and so can coumadin.. I'm sure you are way ahead of me and have that one checked out. Anyhow, try to stay calm and have good thoughts. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
jaminkw Posted October 14, 2008 Share Posted October 14, 2008 WAY TO GO PATTI, YOU DONE GOOD! Am so proud of the way you handled that and thanks for standing up for yourself and all of us in this situation. Judy in Orlando Quote Link to comment Share on other sites More sharing options...
blueeye Posted October 14, 2008 Share Posted October 14, 2008 You get 'em girl! I so hate that CYA mentality. But I was hoping something like that was going on. It's good you have an inside source that can take time to talk to you. When my Mom had the recurring pleural effusion, she had bad SOB. Quote Link to comment Share on other sites More sharing options...
Nova Posted October 14, 2008 Share Posted October 14, 2008 Hi Patti, You keep right on asking questions. Harry never did, but I made up for it! They didn't like me much sometimes, but hey, who cares????? Information is knowledge. I'm always thinking of you. Love, Nova Quote Link to comment Share on other sites More sharing options...
Wendy Posted October 15, 2008 Share Posted October 15, 2008 Hi Patti, Glad that you got a chance to discuss your scan in more detail. I also want to interject that I have had really good luck with the Tarceva and Avastin combo. I have been on it for 2 yrs 10 months .I just had my scan that everything is still is stable. I will continue on the regimen for another 9 weeks . I have my fingers crossed that the combination does great work for you too. Wendy Quote Link to comment Share on other sites More sharing options...
fillise Posted October 16, 2008 Share Posted October 16, 2008 Patti--proactive is good. You should never apologize for looking out for yourself--but you know that already! Susan Quote Link to comment Share on other sites More sharing options...
Kasey Posted October 16, 2008 Share Posted October 16, 2008 Geez, Patti, I've been away since Monday AM and missed most of all this. Good for you, I say. Glad you got some resolution. But I don't get it about not allowing you the reports. It is YOUR right to have everything - written reports, copies of scans, the whole thing. As to the PA getting all in your face and all...............EASY for those not dealing with this to be so complacent. I'd just love to see how THEY would deal with it if it just happened to be them. You know we are all in your corner. I'm only a state away and have been known to be able to kick butt pretty good. Just say the word! Kasey Quote Link to comment Share on other sites More sharing options...
Nick C Posted October 16, 2008 Share Posted October 16, 2008 Good for you...tough cookie!!!!!! Quote Link to comment Share on other sites More sharing options...
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