25 replies to this topic

[lehrerin]

Sent you some VERY specific suggestions to help with your  pain.    Some symptoms were better almost immediately, the others took about a month to improve.   Hope the suggestions help, but be sure go get them approved before implementing them.  If your doctor doesn't help you more maybe you should look for another doctor.   You are going to have a lifelong relationship  an oncologist/hematologist, so maybe you should find one that works more with you.  The days of "I'm the doctor so do what I say" are LONNNGGG gone.

[CallMeLucky]

Your Dr. is a jack as*.  Unfortuanately anyone who studies and passes the exams can become a doctor, regardless of their personality.  Your Dr. is either lying to avoid having to deal with the issue, or has so few patients on Gleevec that he does not understand the side effects and how to treat a patient with CML.  If it were me I would tell him that I was switching doctors because his lack of knowledge regarding the side effects of the treatment I am on disturbs me and I am unable to trust my care to someone who is unqualified.  See how he likes that kick in his god complex.

I would suspect your doctor does not specialize in CML.  He is probably used to treating other cancers and thinks Gleevec is a miracle and his CML patients should be greatful they are alive, kiss his hand and leave quietly.  Screw that!

We know all too well that life is too short to have to deal with people like this dope.  I hope you find someone who treats you with the respect and care you deserve.

P.S.  My oncologist is a CML specialist, I tell her often about the pain I get in my legs and how it is one of my top two side effects (fatigue being number one).  She nods and says "we know these drugs cause these types of side effects, I'm sorry".  She doesn't offer all that much in the way of solutions, but she acknowledges that it is real and she shows me compassion and respect.  We deserve their respect, both as humans and as their paying customers.

[samycat24]

Thanks everyone! I called my insurance today and found several Oncologists in my area..I called one and told their office why I was wanting to switch and they completely agreed with me. especially when I told them I had had no bone marrow work done. I have a great feeling about this Dr and see him on the 28th. I called my other Onc to have my records sent over to the new guy and they were completely fine with it. I'm actually looking forward to seeing this new guy and going at this from a new perspective. I don't necessarily want to go the narcotics route but if I have to for a short amount of time just to get through the bad spots I will. Thanks all for putting everything in the exact words I needed to see inorder to make this decision easier. I initially thought maybe I was over reacting to the situation but looking back I know I wasn't. My Onc's rudeness and abrassive manner was uncalled for and I am so happy I was proactive in choosing another. I'll keep everyone updated on how it all goes. Thanks again!

[lala]

Hi....I hope things get better for you.....think about taking the g in 4 small pills per day.....it has changed my life!  No kidding.....that big 400 sat in my stomach all night long....burning and making me NOT sleep.......and in the morning, I could barely walk.  Now, after a few months of the little pills, I feel half-way to normal!  Two pills twice a day per TREY!  THANK YOU, TREY!  Best of luck to you...keep fighting! 

[Susan61]

Hi Stacy:  I missed that part abou no BMB done.  I see a lot of patients not getting a BMB, and being put right on a TKI.  I do not know how a doctor can just do that without checking the bone marrow too.  That is so important.  I wish you the best with your new doctor.  Its your body and your life, and I tell everyone the same thing.  You go for as many opinions you want before you choose a Oncologist to take over your treatment.  You should know after you see this new doctor if his protocol and knowledge of CML is right on or not.

Susan

[samycat24]

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, thedigestive 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.