Patti B Posted April 30, 2009 Share Posted April 30, 2009 Hi everyone- I have not been on much again lately. I do try to check on everyone as much as possible and I am afraid I will never catch up on posts. Thought I would share the latest in my soap opera. Many of you know that I really don't get along with my onc very much - he does not like anyone asking questions or being proactive at all and you all know that just doesn't get it with me!!! I try to see my PA Tara as much as possible; she knows how I feel about the doc so she is very considerate in that regard. Anyway, I got this horrid sinus infection. Bringing up every color imaginable and even have brought up blood. So I had to see the doc on the 10th and asked him for some antibiotics. He said he wanted me to wait for 4 weeks until my regular lung scan was due and then would also do a sinus scan and did not want me to have antibiotics because it would mess up the scan. I begged and pleaded because I felt so bad but he walked out the door and I left without antibiotics. The following Friday, the 17th, I was having what I call "drive-through" chemo (since Navelbine is weekly I only see the doc or PA once every three weeks and the other two weeks I just go straight to chemo) and the chemo nurse heard me coughing and knew how sick I felt. So she called upstairs to my doc to see what he could do. WELL........he came flying into the chemo room, told the nurse to GET OUT and proceeded to FIRE me as his patient!!! Now, he is leaving in July anyway to go to Florida, but told me he is sick and tired of nurses calling him questioning his treatment of me. Now......I don't like the man and really wanted to do cartwheels across the floor, but I was shocked.........my doc fired me!!!! Threw a script for antibiotics at me and told me forget the sinus scan!!!!! I have to tell you all, it was the talk of the chemo center!!! My PA Tara called me at home later that night to see if I was OK and told me she doesn't know what that was about but that she would help me pick out another onc. AND.....she said since he was no longer my doc, she wanted to push up my lung scan by a couple of weeks and do one right away because she felt uncomfortable with my coughing. I went back last week and saw Tara. Now, I was so sick from the antibiotics. The doc had put me on Augmentin 875 mg two times a day. The nurse was appalled that he put someone my size on that strong of a dose. I had such bad diarrhea and was so sick; I lost 9 pounds in 7 days, my veins collapsed from being dehydrated and I had to be given fluids. Guess that was the docs goodbye present to me!! Anyway......I have been on Navelbine for about 5 - 6 months now. Since I started chemo 2 1/2 years ago, I had shrinkage after my first round of carbo/taxol and since then all scans have been either progression or unchanged. WELL.......in the six weeks since my last scan - I HAVE SHRINKAGE!!!!! Some spots are slight, some are moderate. However much, I'll take it!!! I found it amazing that a person can have shrinkage when they feel so lousy!!!!! I know there are several people who are starting on Navelbine soon so thought I would let them know - might take a while for it to do something, but it does!!!! NAVELBINE ROCKS!!!!!!!!!!!!!!! Everyone take care!!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
cat127 Posted May 1, 2009 Share Posted May 1, 2009 Wow Patti - what a story! First and foremost - YAY!!! on the shrinkage, that is just wonderful news. Really really great to read it. But I'm sitting here just appalled at your doctor's behavior. Just totally unacceptable. Guess there is no one to really complain to since he's leaving, but I'm just sick at the thought of how he treated you. Here's hoping your PA helps you pick out an onc that you can have a good working relationship with. No doctor should treat their patient as yours has treated you. Quote Link to comment Share on other sites More sharing options...
recce101 Posted May 1, 2009 Share Posted May 1, 2009 What a great result from such a horrific story — go figure! Congrats, Patti! Ned Quote Link to comment Share on other sites More sharing options...
ts Posted May 1, 2009 Share Posted May 1, 2009 Patti, I'm sending you heaps of healing to feel better and build on the shrinkage. I think a note in the onc's file is worthwhile - perhaps it can follow him to his next position and keep someone else from such terrible behavior. Good that you have a proactive PA. When I was in the hospital for surgery, I had one nurse who was unacceptable. We were able to make a complaint about 3/4 of the way through her shift and I had no more contact with her for my remaining stay. Not even eye contact, though I tried to say hello when we passed in the hallway. Stephanie Quote Link to comment Share on other sites More sharing options...
SandraL Posted May 1, 2009 Share Posted May 1, 2009 Wow Patti, your med onc sure is a piece of work. He obviously doesn't know how to deal with the likes of you. Thank goodness he is leaving. Better luck with the next med onc although I don't think you could get anybody worse. I am sorry you had to suffer so long without appropriate medical attention. And a great big HURRAH for the shrinkage! That is such super news. It is so good to hear when treatments actually work. So just keep up with that please. Just keep on being you with whatever doc you get, and keep up the awesome results girlfriend! Sandra Quote Link to comment Share on other sites More sharing options...
beatlemike Posted May 1, 2009 Share Posted May 1, 2009 Hi Patti. Im so happy the navalbine is working! And Im glad you are rid of that(o) you had for an onc. Hopefully your next one will be the right one. Quote Link to comment Share on other sites More sharing options...
Kasey Posted May 1, 2009 Share Posted May 1, 2009 Oh Patti...................sorry about all of this. Sorry, too, not seeing you around here much anymore. I was so used to 'seeing' you and was always so interested in what you had to say. Hope it's not cause you're not feeling well. Maybe getting fixed up a bit and with your good news, you'll be back in full swing soon. I hope so. As to your onc ~ sounds like the docs around here. This is what I've found. The small time docs believe they are very big fish in a tiny little pond. My doc at NIH is world renowned and published around the world as well. He is the most humble man ~ a very small fish in a great big ocean. That's the difference I've noticed. I'm glad you got 'fired' and hope you now can find he compassionate and knowledgable doc you so deserve. And congrats ont the shrinkage. Hope you start feeling better real soon. Don't stay away so long now, ya hear! Kasey Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted May 1, 2009 Share Posted May 1, 2009 (((Patti))) You had to know I would resurface to say CONGRATS on this news again! lol. That my dear was one of THE BEST phone calls ever, eh??! Still smiling and so happy for you. Cannot wait to celebrate in person! I STILL say you should file a complaint about the quack. He should not get away with treating ANYONE like that. It's unprofessional, it's immoral and it's just plain wrong all the way around! Many hugs as always. Chris xxx Quote Link to comment Share on other sites More sharing options...
dchurchi Posted May 1, 2009 Share Posted May 1, 2009 Pati, Shinkage is the best news I could have read. you go my friend Reading your story makes me realize how lucky Alan and I were with the Drs he ended up with. I had both Alan's Med. oncologists and Radiation ocologists HOME phone numbers. They are both the most caring men I have ever met. I thank God everyday these men are helping others in their cancer battle. Wish I could bottle them up and fly them from my coast to yours. Again congrats on first being Fired, as it sounds like a very good thing and Happy Dance for shirnkage!!! Quote Link to comment Share on other sites More sharing options...
shineladysue Posted May 1, 2009 Share Posted May 1, 2009 (((Patti))), FIRST , the news about the shrinkage is just wonderful!!! I hope it's just the beginning of a shrinking trend. Now about that doctor of yours.... Patti, he sounds very insecure as a doctor... worse than that , he sounds very paranoid and seems to have a temper to go with it. I do hope you will report him and most of all, I hope you will get an onc who is compassionate and wise enough to LISTEN to his patients. I'm just so sorry that you have had to suffer from his abusive behavior. Please know that you are not only wanted , but NEEDED on this board. I hope you will soon be better and will let us know how things go with the new doc etc. Love and Hugs to you, sue Quote Link to comment Share on other sites More sharing options...
Patti B Posted May 1, 2009 Author Share Posted May 1, 2009 Thanks everyone!!! I DID ask my PA last week if I could read my chart which she allowed me to do - wanted to make sure the onc didn't write anything in there that would turn the new one against me.......remember that Seinfeld episode when Elaines doc wrote something in her chart and no other docs would treat her???? This last doc has just always been very obstinant about anyone asking questions about their treatment. The thing about it is - hes the chief of lung oncology at the Clinic and is going to Orlando to be the chief of lung oncology there!!! Everyone admits he knows more about lung cancer in his little finger than most - but he is way too busy for his patients and has no bedside manner whatsoever. Even my PA said that its not that I demand certain treatments, I just empower myself with knowledge and ask questions. Apparently, hes the kind of doc who wants you stupid. Some of you may remember that I had to BEG for an ultrasound of my leg - kept complaining of redness and swelling and he kept saying it was a side effect of chemo------duh, I had a blood clot!!! When I was put on Tarceva and asked for prescriptions for the possible rash and bad side effects, he told me I was NOT to talk to people who are on the drug, just to him!!! And then there was the fiasco with my hip met - he wanted me to wait 8 weeks for a bone scan when I was dragging my leg behind me like Igor!!!! Thats when I had to tell him that I cannot turn the light switch off at 5 pm - that I have to live with this 24/7!!! I think thats when he got disgusted with me...............but a good doc should have said "you're right - sometimes us in the medical profession forget that". I am feeling very good about the new doc I picked - there were two to choose from and both come highly recommended to me by everyone at the Clinic. My cousin is a chemo nurse there and she likes the one I have picked. The main reason I picked him is that he is one of the contributing oncologists now over on Dr. West's site - I figure that means he is very open to patients being proactive in their treatment. Wish me luck!!! Quote Link to comment Share on other sites More sharing options...
jaminkw Posted May 1, 2009 Share Posted May 1, 2009 First Patti, I can't tell you how thrilled I am for you that you are finally on the upside of this diseas again. Way to go girl! Secondly, you must have really pushed this guy's buttons with your continued assertion. He obviously is used to being able to intimidate other patients, even the assertive among them, into submission. Not our Patti! Getting fired by this guy is the best thing that ever happened to you. Hope he's not going to MDACC in Orlando???!!!??? I don't think he and I would get along at all. Congratulations again. Judy in Key West Quote Link to comment Share on other sites More sharing options...
Janet B Posted May 1, 2009 Share Posted May 1, 2009 Sheesh Patti - what a mess you have been going through !!!!! I am SO glad that your scans were good and SO SO glad that you have a new Oncologist. Congrats and a big Whoo Hoo!!! peace - Janet Quote Link to comment Share on other sites More sharing options...
carolhg Posted May 1, 2009 Share Posted May 1, 2009 I have always heard that WHEN ONE DOOR CLOSES-ANOTHER ONE OPENS! A new one opened for you!!! Don't just walk through that door girl! Take a moment to dance, shout, holler, do the twist, the boogaloo and whatever other dances they are doing these days, then strut on through that door as the worthy and dignified lady that you are!!! Carol Quote Link to comment Share on other sites More sharing options...
Caren Posted May 1, 2009 Share Posted May 1, 2009 Yay for the shrinkage!!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
fillise Posted May 1, 2009 Share Posted May 1, 2009 Patti--this sounds like good news on ALL fronts. You got shrinkage in your tumors and major shrinkage in the big tunor that was a pain in your rear end--if you know what I mean! I'm thrilled the scan showed the good news and I hoping you will love your new onc! Susan Quote Link to comment Share on other sites More sharing options...
Flyman35 Posted May 2, 2009 Share Posted May 2, 2009 Wow Patti!!! And I thought I was the drama queen around here. Way to go girl. I really pray that everythimg works out for you. WOOO!!! HOOOO!!!!! on the shrinkage. It's about time. Denise Quote Link to comment Share on other sites More sharing options...
Connie B Posted May 2, 2009 Share Posted May 2, 2009 So VERY HAPPY the end results of this (doctor/jackass) story turned out as good as it has. HOWEVER, you NEED to copy exactly what you wrote to us and give it to management at your clinic. This is NOT in ANYWAY, SHAPE or FORM how any Onc Doc or ANY DOC should act. Please don't let this happen to someone else with him. He needs to be stopped dead in his tracks. Congratulations on the GOOD NEWS! ! ! ! ! Happy Dance Time! I sure hope your feeling better too. Quote Link to comment Share on other sites More sharing options...
Kasey Posted May 2, 2009 Share Posted May 2, 2009 Hey Patti ~ you're update is sure making me smile!!! I do believe I have the designation of 'DP' after my name in the local doc's charts ~ DIFFICULT PATIENT! And I don't care. Because of it, I am still here. Now your guy might have known more in his little finger about LC than everybody else collectively, BUT he was NOT taking good care of you. So WHAT what he knew. He didn't seem to know all he should have ~ IMHO. So ~ glad you are on a new leg of the journey and doing well too! Keep advocating for yourself. If docs don't like it, then move on to somewhere where they are working WITH you and FOR you for the BEST care. Good for you. I think since it's the weekend I now have a legitimate reason to celebrate with a glass of something ~ to YOU! Kasey Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted May 2, 2009 Share Posted May 2, 2009 Hi Patti-- I'm so glad you put that doc in his place, it's your life on the line not his and we all have to be pro (smile at everyone and question everyone) active. I remember that Seinfeld episode, love that show. So glad Navelbine is doing the trick for you and things are turning around. Give them hell Patti!. Take care and have a nice weekend. Rich Quote Link to comment Share on other sites More sharing options...
Ellen in PA Posted May 2, 2009 Share Posted May 2, 2009 Hi Patti. Congratulations on the shrinkage! And congratulations on getting rid of that doctor -- he sounds seriously unstable (as in 'nutcase'). Doesn't matter how brilliant he is -- a top doctor has to be brilliant AND sane. What's the name of the new guy? Is it Dr. Pennell? I follow cancergrace.org and think he's fantastic (and he's in Cleveland). Really smart and sooooo nice. Lots of luck! Ellen Quote Link to comment Share on other sites More sharing options...
Patti B Posted May 2, 2009 Author Share Posted May 2, 2009 Ellen- Thats him!!!! I figured if he has the time to contribute to a website he must be dedicated AND believes in patients being proactive in their own care!!!! I get to meet him this coming Friday!!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Ellen in PA Posted May 3, 2009 Share Posted May 3, 2009 Bravo, Patti, you've picked a winner! Dedicated he is -- he answers in great detail, and at all hours of the day and night. If you're not familiar with his contributions on cancergrace.org, you should really check it out. (It's a great site all around.) In any event, I bet he's going to be an ENORMOUS change from your previous you-should-excuse-the-expression doctor. Ellen Quote Link to comment Share on other sites More sharing options...
Muriel Posted May 3, 2009 Share Posted May 3, 2009 Great results, Patti, but what terrible experiences you've had. Sorry. Now, I'm worried about where your former dr. is going in Orlando. Do you know if he's going to MD Anderson or Florida Hospital? Can you find out. Sure hope he's not going near MDACC. Muriel Quote Link to comment Share on other sites More sharing options...
Patti B Posted May 8, 2009 Author Share Posted May 8, 2009 Hi everyone- Well, I met my new onc today, Dr. Pennell. Yes, he is one of the docs over on Dr. West's site. I really, really liked him. He is very relaxed, smiles, we talked about the Grace site, and I got the impression he would have stayed in the room with me all day had I had enough questions for him. He asked me if I get any side effects from the chemo and I told him that today would be my 50th chemo over 2 1/2 years and so I do get tired and sometimes feel like my body is beginning to feel the effects of all those chemos. Thats when he told me I look terrific; actually he told me that twice!!! (I told him I bet he tells that to all the girls). He said he read my chart, saw my age and that I was on my 5th line of treatment and certainly did not expect to see anyone looking as good as me when he walked in the door. Gee - think I will pay him double for that!!! He also told me that normally Navelbine is a maintainance drug and they really don't expect a lot of improvement, just stability while you are on it but that I blew away that stat with my shrinkage so "we'll stay on that horse and ride it as long as we can".!!! I came away with such a good feeling about him and I sure do hope that this doctor-patient relationship proves to be a good one!!! Everyone have a great weekend!!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
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