Hi All, on my last visit for my 3 week infusion of Herceptin, after I threw out my question to you all on the thyroid, my onc. wasn't going to do any bloodwork since the previous ones looked so good. I kept pressing the issue of feeling extremely fatigued (was I putting in too much in trying to be normal again with going back to work & doing stuff around the house?) They had no answers. I asked should I cut back my hours at work? No definite answers there either. The onc. starts jotting down notes and asks how is my joint and muscle pains? HEELLLLLLOOOOO, where has this man been all these past months when I've told him the pain is severe 24/7 - my fingers and their joints are all swollen, can't wear my rings. My thumbs hurt so bad that at times my 16 year old daughter has to button my jeans or anything else that needs buttoning. I had told him months ago that Celebrex doesn't really do much. But yet he still keeps me on it. After a while, as I'm hooked up to my iv pole, they decide well maybe we should run some blood work. Well, this is what they have found out, my thyroid is in the normal range, but low. My other things came back normal but still in the low range. They don't believe in doing anything with these low in the normal ranges, till they step over the normal border. uh ha, I see. The big shocker was that my potassium level came out with bells, whistles and flashing lights saying I was at a low of 2.9. I hear now that the range should be 3.5-5.0. None of this 2 stuff. They wouldn't let me leave until I had a full bag of potassium, another 4 hours worth of hanging out. The nurses all said I was in a critical state and I shouldn't even think about waiting for the potassium till Monday. Now, I wonder Ladies, where in the hell would I have been if I wasn't persistent in telling them that something was just not right. Mind you that Herceptin works against our hearts, extremely low potassium also works against our hearts and as for me, I already have a heart problem to start with (mitro valve prolapse). If they didn't do bloodwork that Fri. I could have keeled over with a heart attack and no one would have been the wiser, they would have thought it was just from the herceptin. I had a follow up the following Friday, after taking potassium pills twice a day & still taking them and my other bloodwork was all the same but the level of potassium was back to where it was before I crashed. I'm now looking forward to my next Muga on Nov. 20th. I'm betting my numbers have dropped, my chest feels like someone is sitting on it when I go up the stairs or try to walk too fast. Geeze isn't this ever going to stop?
I'm sorry, ladies, for complaining and rambling on. I just get tired of telling the Dr.s all the symptoms of what I feel and they don't hear me! It's good to read the posts from everyone and to see that sometimes I'm not alone with it all.
Thanks, everyone, for listening.
Sue
p.s. one note of good news, I was given the prescription amitriptyline, 25 mg. 1/2 a pill nightly. the medical description of this meds is basically used for an antidepressant, but it can also be used as a pain reducer. It's great! The severity of joint and muscle pain has deminished quite a bit. Also still taking Celebrex, don't know what for, didn't do much for any of my aches and pains, just one more pill to continue on with.....