After much anticipation, and a long written list, I met with my oncologist for 45 minutes today. He was in good form today, and had the extra time to dig into a few things. I present his findings/views, not in any particular order of importance, more on how my brain is working or not working tonight.
Concerning my PC, he's encouraged with the big drop I had a few months ago with my last PSA, and we plan to continue the "Watch and Wait" approach at least until my next reading which will be early December. He does not feel that any of my other "conditions" or issues have anything to do with my PC.
On the weight loss issue, he looked up his records on me, and since I first began to see him, I have lost over 113 pounds. He told me about the lengthy phone consult that he had with my local long term PCP, and admitted that they were both puzzled by what is going on, and both feel that the other specialists including the last Gastro doctor, are simply missing something important.
Yes, as he said, I am technically anorexic in the medical sense, which simply means being a state of having no appetite, but he knows that I am not anorexic nervosa, which is an entirely different matter. He does not believe that I am depressed, nor suffering from PTSD, or any mental or emotional issue. He believes there is an undiagnosed medical or organic reason for me having absolute zero appetite for over 5 months straight.
I talked to him about the zinc/copper theory, and he immediately looked up the story that was linked to me from a member here from the NYT paper. He thought it was a long shot, but agreed that it could be something this rare and obscure that has trigger that portion of my brain. I told him, since insurance wont pay for the testing, including Medicare or my Medicare Blue, that I intended to bring it up to my VA PCP in a couple of weeks. He thought that was a good idea, because he realized that the VA essentially will pay for lots of things that other insurance won't pay.
He felt the danger mark was 125 lbs, heaven forbid I drop that low, while my PCP feels its 130 lbs, but who's going to argue over a few pounds at this point. He found it interesting that this loss of weight really hasn't changed either my chronic fatigue or my chronic pain - either for the good or for the bad.
Brought up to date on my hyperbaric treatments and the pending major dental surgery. He's calling the VA Radiation Expert Dental Surgeon in the morning, to come up to speed with that subject. Insists that he needs to stay in the loop with any of my care, VA or not. He feels its a drastic step to include all the oxygen treatments, but understood that its being done to assure my safety during and after this surgery, due to the sheer amount of what is being planned to be done.
I showed him the new troublesome lump in my left cheek (lower left jaw) area, that I have only recently discovered. Due to my 3 times with the porocarcinoma (and all 3 events were "left" sided", that I need an immediate MRI of my face. It is being set up for early next week. If whatever it is, is suspicious enough, he said already that it would warrant having it removed for examination for the possibility of porocarcinoma. They would have to test specifically for it, due to its ultra rare occurrence. I hope and pray it doesn't come down to this. All I need is an operation to my face on top of all this pending dental, cheekbone, and gum work.
We also discussed some general dietary hints, knowing that along with the weight loss problem, I will be without teeth for a minimum of 4-6 months, making it even harder to deal with the weight loss issue itself. He said it will be very challenging at best.
Told him about my increasing back pains, and while neither the doctor or myself or itching for spine surgery of any type, he already vetoed that many months ago, he said if it was still increasing when I see him in 3 months, he will order all new MRI's of my spine, to compare to the most recent ones, and if indicated, he will have me re-examined by a different spine surgeon to get an opinion. His greatest fear with the back issue, is that my QOL would likely suffer even further decline, if I undergo any type of major spine surgery, he said he has seen far too often, where the patient was worse off as a result. The jury is out on that subject.
As far as meds goes, he left things status quo. No changes with either the Fentanyl or the Norco. He assured me again, that I am too well acclimated to both drugs, and does not feel that the meds have anything to do with either the weight loss or the condition of my mouth. The mouth/teeth issues, he fully accepts its the direct result of the massive amount of radiation I endured back in year 2000 for the last bout of porocarcinoma in my throad.
It was a good visit, I appreciated the extra time he took to hear me out on all these issues. He takes nothing lightly when it concerns my health.