tag:blogger.com,1999:blog-5398956932575790.post8598976668886351067..comments2024-01-23T21:37:27.869-08:00Comments on Nick's Myeloma Blog: Unsettling lab results, and GD exposed as a control-the-disease sheep in wolf's clothing!!Nickhttp://www.blogger.com/profile/09733312143898687572noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-5398956932575790.post-12234808035487440862010-04-21T06:09:08.616-07:002010-04-21T06:09:08.616-07:00Nick, I feel your frustration. My local Onc. is t...Nick, I feel your frustration. My local Onc. is the same way. I truly don't understand what the problem is. As others have said, it is MY information. I shouldn't have to fight to get it. Waiting weeks for results is unacceptable. We, as patients, should NOT have to track everything down, make sure orders are correct, or make all the phone calls, but unfortunately we do. It's sad and I, for one, am tired but I still have a lot of fight left in me. No doctor's office wants to mess with me on a Dex day.<br /><br />JodiJodihttps://www.blogger.com/profile/07128765102912774603noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-71891425507028982182010-04-21T05:31:11.650-07:002010-04-21T05:31:11.650-07:00Nick, are you getting the PCR test and if so what ...Nick, are you getting the PCR test and if so what are the results. I wonder when you get your cold if your immune system could be creating a number of simular immunoglobulins that could show as a slight band with the immunofixation test?Jerryhttps://www.blogger.com/profile/08334002321240267987noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-86452308970553326592010-04-21T04:42:55.169-07:002010-04-21T04:42:55.169-07:00Wouldn't it be great as per Sandy's though...Wouldn't it be great as per Sandy's thoughts to have a scheme whereby you could read patient reviews of doctors. After having just changed my blood doctor, not that I doubted his knowledge, but he wasn't exactly forthcoming with MY information, the new one comes recommended.feresaknithttps://www.blogger.com/profile/14818638535417712636noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-30362963433390617602010-04-20T23:13:16.002-07:002010-04-20T23:13:16.002-07:00Hi, Nick:
I do have a local infusion center, but ...Hi, Nick:<br /><br />I do have a local infusion center, but I don't have a local oncologist or hematologist. The cancer center follows BN's or BB's orders. We do the labs, call MIRT (as you know) and the local Onc/RNs hook me up after consulting with UAMS. My GP handles magnesium/phosphorus/ etc. needs, but all MM related stuff is ordered by Dr. Nair or BB. It beats having to hear from the local MD that I was 'brutalized' in LR. SeanSean Murrayhttps://www.blogger.com/profile/06954782169183374420noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-20330270933476117692010-04-20T22:13:02.506-07:002010-04-20T22:13:02.506-07:00Some "dock-tors" aren't really much ...Some "dock-tors" aren't really much more than laborers, barely able to manage shipping materials from port to port. A few rare ones have managed to be brilliant and some are even brilliant AND compassionate.<br />Keep on demanding performance... it's your right and it is their OBLIGATION, if only because they are supposed to be providing a "service." It's too bad patient reviews cannot be published like whether or not Dr.-So-n-So is really a four star or not...Sandyhttps://www.blogger.com/profile/02265922352726668243noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-36186164478545881412010-04-20T22:11:16.326-07:002010-04-20T22:11:16.326-07:00Thanks, Sean!! How are you getting your Velcade ...Thanks, Sean!! How are you getting your Velcade without a local onc?Nickhttps://www.blogger.com/profile/09733312143898687572noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-40638816717691830792010-04-20T20:05:38.774-07:002010-04-20T20:05:38.774-07:00Nick:
You are MORE than justified in your anger. ...Nick:<br /><br />You are MORE than justified in your anger. If I couldn't get every stinking piece of my lab information, I'd kick the guy (and/or his institution) to curb and find someone with a legitimate team mentality and desire to keep me informed. Difference of opinion is one thing, but the cost (monetarily and medically) is too great to suffer fools, even if they are highly esteemed MDs.<br /><br />I met with my local cancer center's oncologist and all I got was a condescending diatribe about how the MIRT plan was not a good decision. Guess what? I don't have a local onc - I'm flying solo, keeping in close touch with UAMS and watching my stuff like a hawk. Ideal? No, but I don't have a counter-productive middleman serving me poorly.<br /><br />Keep at it, Nick.Sean Murrayhttps://www.blogger.com/profile/06954782169183374420noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-57437673527579244102010-04-20T18:24:22.155-07:002010-04-20T18:24:22.155-07:00It is crazy that we know more than the Dr.'s d...It is crazy that we know more than the Dr.'s do. I'm really new at this and I've already had to explain myeloma to a Doctor. I went in for something non-related but I felt it was important to let him know I had it. He asked "where in your body do you have the myeloma"? I explained "everywhere". He rolled his eyes and said "when it was diagnosed where did it start"? I stopped and knew he didn't have a clue and said to him "think leukemia"! He looked confused and left. I can't think of how difficult it would be to have to go to a Dr. every month and explain what you need. You think they would call somebody and get up to speed.Steven L. Ritterhttps://www.blogger.com/profile/12148066800302703765noreply@blogger.com