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My Oncologist is rude jerk..advice?


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#21 lala

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Posted 21 September 2011 - 08:02 PM

I feel bad about all this, too.  Tex sounds like a very nice guy, and I always enjoy reading Caroline's posts....she is smart and interesting and caring.  I hope it all blows over so we can continue hearing from the both of you/them!  Please?!  Thanks, Lala



#22 jrsboo

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Posted 21 September 2011 - 09:08 PM

I never meant to hurt anyone's feelings, I thought that I was defending the original poster, who was feeling that her onc was not listening to her and was making light of her pain.  I am not usually the starter of any storms by any means.  I guess I was acting as a mama bear defending one of her own.   While there are other reasons for feeling pain, the fact that the oncologist and others were telling her it wasn't happening due to the TKI's, and I have first hand knowledge that it IS due to them, made me respond without thinking.  I apologize.

Caroline



#23 Tex

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Posted 22 September 2011 - 10:54 AM

Accepted.  Thank you.



#24 donnadavis

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Posted 22 September 2011 - 12:25 PM

Move to a new onc. pronto! I live in a small town and I had three different oncs. before I thought to ask the question "Have you ever treated anyone with CML?" The answer was no. None of the three knew anything about treating it but to prescribe Gleevec, when that failed they didn't move me to another drug, just messed with the dosages. My onc. in St. Louis told me he heard this often that although CML is not rare oncologist just don't keep up with  the changes.  Go to a large cancer center if possible .



#25 MsMerBenz

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Posted 24 September 2011 - 04:28 AM

Stacy,

I am new to the site.  I am so GLAD you chose to fire your oncologist...I had a very similar experience when I was "newly" diagnosed with CML.  I was referred to a hematologist by my General M.D. before the actual diagnosis.  Although, he (hematologist) did all the necessary blood work and bone marrow biopsy...he told me it was unlikely I had any type of cancer.  Once I was diagnosed and started on Gleevec, I was having a great amount of skin sensitivity, nausea and bone pain in my legs.  At one of my visits I reported these symptoms to him and he told me "just suck it up"!  And this is an exact quote.  I was so shocked...but I never went back to him.  I was lucky to be referred to City of Hope by a friend whose wife was being treated at this Cancer Center in  California.  He told his wifes' doctor about me and she provided him with a CML Specialist's name at City of Hope and I have been treating with him ever since. 

This Doctor is AMAZING...he explained everything thing to me to include drawing pictures of 9-22 chromosone translocation and answered every question I had and continues to do that for me and my family when they come with me.  His staff is just as caring and always takes the time to review everything that is going on with me.  I have had many health issues since being diagnosed with CML and he has referred me to the appropriate specialists @ COH to include a cardiologist, endocrinologist, urologist, and a neurologist...I am very blessed to have such a great support system. 

I hope you receive the treatment you and all people with an illness deserve from those treating and caring for us! 

Take Care

Paula



#26 jones2641

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Posted 24 September 2011 - 10:37 PM

Fire his butt! -PERIOD!-



#27 rickpister

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Posted 25 September 2011 - 02:44 PM

I am glad to see I am not the only who attributed leg joint pain to something related to CML and then have his/her MD respond as if I am making up something over nothing.  I too have had leg pains.  Sometimes they are quite painful.  Advil only provides temporary relief.  Anyway, I spoke with the Rx company about it.  The pharmacist said people on Sprycel experience leg pain.  I forget the percentage but I think it was 15%.  I then called my doc's office and had it documented so we can discuss it at my next visit.  When I finally met with my doc he looked at me as if it was in my head and pushed it aside.  I am not sure what to think about this.  I like the guy.  He saved my life and I am now PCRu but I don't get this attitude.  The pain is real just like the big painful bruises, gigantic spleen, weight loss, fatigue, and hot flashes.



#28 hannibellemo

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Posted 25 September 2011 - 03:06 PM

Rick,

If your doc doesn't respect you, and he obviously doesn't, check out the replies above - get someone who will listen to you.

Good luck!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#29 MJL

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Posted 05 October 2011 - 06:50 AM

Fire the Bum!  We know tummy issues and bone pain are a side effect of Gleevec. But they do subside after a while even though they return occasionally. Don't give up on the drug yet, sometimes our bodyneeds to adjust. Hope your new Onc is a Hemotologist too!

MJL.



#30 sandimartini47

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Posted 05 October 2011 - 05:43 PM

Hi,

I had a rude, jerk oncologist for one visit; he refused to give me anything for pain and basically any medication for whatever was going on.  I had blisters in my mouth, etc.  I got rid of him so fast--never went back.  I have a woman oncologist who is caring and understanding and also a good doctor. Do some research and find out the education and background of your next oncologist and then DUMP HIM.  We have enough to deal with without dealing with that .I always tell my kids, go with your gut feeling.   Your gut tell you he is a jerk so find someone new.  If he is a jerk now, he could be worse if you get really sick--who needs that......sandi



#31 samycat24

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Posted 08 October 2011 - 02:01 AM

Thank you to Everyone that posted! I did fire hima nd found a new Hematologist/Oncologist. Upon having my first appointment with him and finding out how bad the side effects were for me, he immediately took me off the Gleevec. Then I had more bloodwork..and asked him if he thought it was odd that my other Onc did not do a bone marrow biopsy on me. He was shocked. He said he could not imagaine why they wouldn't have..and then scheduled me for one for the next visit..which was this past Wednesday. At this past visit I had more bloodwork done, a chest x ray, and my bone marrow biopsy..FINALLY. Which I can honestly say I've earned my stripes by having done..Wow does it freaking hurt! But he explained everything he was doing, going to do, and precautions I needed to take after having it. Now It's still sore but it gets better each day. He then said he wants to wait until the Gleevec has completley been out of my system before prescribing something else. I go back this Wednesday for the reults of the bone marrow, and to possibly start new meds. Now this new Dr. may not have the bedside manner of a saint but he answers my questions, dots all the i's and crosses the t's..I really like him and like the treatment I'm getting..again..FINALLY! When he was doing the bone marrow i remember he said I was the first patient to ever ask for one..I said not that it was on my fun things to do list but that people I knew could not believe my other Onc had not done one yet and what kind of Dr wouldn't order one..His answer to that was..the name of my last Onc! LOL! I guess they used to work together. Anyway..the bone pain has all but subsided, the digestive problems are almost all gone, and I'm looking forward to a new medication. I'm still fighting fevers most nights but trying to be proactive in fighting them. My white counts have been really good (within normal range) and so I'm hoping for positive results from the bone marrow. I guess at this next visit he's going to look at new meds for me. But to finally have a Onc care about my treatment, and to recognize how bad I was reacting with the Gleevec means the world to me. I feel lucky to have all of you and this site to get help with all my questions and issues! Thank you all so much and I will keep you updated on the results. Thank you all so much and yes...I know I did the right thing firing the other Dr..because what good is getting treatment if it's not the best you can get. It's my life at stake and yes I deserve the best.






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