Dec 20, 2013 - 8:34 pm
I haven't been on in awhile. Busy traveling to visit family and also for work, and just haven't found the time to pop in. Just wanted to say hello and wish all of you improved health and peace in the coming year.
Wish I could say my cancer has been out of my mind. The good news is that there's no evidence of mets still. I've been having some odd symptoms, but my oncologist insists (by email mind you) that it's unlikely my cancer returning or the everolimus I'm taking as part of the EVEREST drug trial. He might be right, but when I have weird, somewhat serious seeming medical issues now, the first thing that pops into my mind (and never really goes away until they leave or proven to be something else) is my RCC.
About a month ago I lost the feeling in the right pinkie and edge of my right hand. It came on rather suddenly about a week before a business trip I had to make to Italy, so I had no chance to go to the doctor. I emailed my oncologist and he said "not his specialty" go see my primary care or urgent care doctor. I was 1 day away from leaving, and doubted they'd figure anything out in that timeframe, so I went on. I was not feeling well during my entire trip. I chalked most of it up to jet lag and irregularity that can come along with not eating well (as well as some sinus issues I've been having) and not having my schedule adjusted. While in Italy I got nervous and went to the ER and they did a CT scan of my brain and found nothing. When I returned I saw an ortho surgeon I'd seen before about my hand and he said it to be a somewhat common nerve problem like carpal tunnel (ulnar neuropathy). Well, after seeing him, I was so dizzy Monday night and Tuesday morning I couldn't drive on the freeway. I was on my way to the family doctor and couldn't get there so went straight to the ER. The doc there did an MRI of my brain and upper spine and found nothing in the brain (thank goodness), and no mets on the spine, but found something near the ulnar nerve that might cause my neuropathy. For the dizziness he said I have unrelated vertigo. He prescribed valium for the vertigo and an oral steriod for the nerve condition.
I'm supposed to see a neurologist about my hand next week. I'm waiting to see him before making a decision about taking the oral steroid.
I continue to feel dizzy and nauseous, and just not feeling well. Then there's the hand. And I continue to think they don't really know what's going on with me.
I'm somewhat pissed at my oncologist. I don't really like his refusal to take charge and help me figure out what's going on with my health. I understand I'm NED, but one of my reasons for doing this study was to get in with an oncologist who would help me figure out quickly if I do get mets to deal with them, and I don't appreciate him passing the buck when I don't feel well. He told me to go to the ER if it's serious. The ER doc knows very little about my type of cancer. The good news there was he did listen to me and included the spine in the MRI when he was only going to do the brain...
The dizziness and nausea is really annoying. I suppose this could be new side effects from the everolimus, but I find it odd it didn't show up for over 10 months. I only have about 8 more weeks left on this study. I'll be glad when I stop taking it so I can rule that out as a cause of health issues.
Appreciate having this place to vent and really great to come to a place where I feel a connection. I'm just sorry we have to have this particular connection.
Peace be with all of you,