Two down, Three to Go

I've gotten past 2 out of my 5 doctor's appointments and the rest should be easy because my expectations aren't too high. My appointment last week was a disappointment although I understood why the rheumatologist took the position that he did. I was all set to say that I wanted to give immune suppressants a shot. I didn't want to go all out with it. I do understand the need to be cautious with someone who has had melanoma which spread to the sentinel node. However, if whatever has kept my C reactive protein high for over a year is responsible in part for the chronic pain, I'm ready to aggressively try to figure out what the problem is.It's kind of ironic because the rheumatologist tested my CRP a year ago to ease my mind and has seemed to want to ignore the results every since. I know it's not really like that but that's what it seems like. I was sent to him on the off chance I had lupus. He was certain after he saw me that the bone pain and balance issues were caused by a vitamin D deficiency. Those two issues were scary. The first because it was new and in addition to the pain I'd come to accept after my LND. The second because the balance issues made me think that the melanoma might have spread to my brain. He tested the CRP as a nod to why I had been referred to him. There is no one test for lupus but if the CRP was up, I thought the idea was that he'd do further testing.What ended up happening was I did have a vitamin D deficiency but my CRP was also up. At that point, it made sense to let the oncology end play out before he did more tests. I started on vitamin D supplements which thankfully did help balance issues and bone pain, although that left the neuropathic and myofacial pain. Still it was an improvement and I was grateful. The oncology end involved the excision of a lump on my back which thankfully came back as a large benign lipoma. Although an MRI couldn't rule out a recurrence in the inguinal region (lots of edema muddies those waters), a PET/CT scan only showed that I lit up consistent with surgical changes from the LND. As always, when the oncology end offers no explanations, I'm grateful. That is not where I want the answers to come from.
So basically the year zoomed on and at every rheumatology appointment my CRP was tested and it was high. The problem with a test like that is that it's non specific. The only reason I keep going back to it is because I have issues which have never been adequately explained by any of the theories about what's wrong with me, or at least they haven't been adequately explained to me. When I saw the rheumatologist in June, he still wanted to keep working on the vitamin D angle (get it up and have it stay up) and he said at some point there were further tests that he could do. The problem was that so many of the treatments for the candidates would involve shutting down my autoimmune response, and he'd need to consult with my oncologist before going down that road.I am finally working up to my point about low expectations. After my June rheumatology appointment, I saw the medical oncologist. His position was that all things equal, it is of course better to avoid autoimmune suppressants but only I could say when the pain was bad enough for me to want to go down that road. He also made some changes in my pain meds because he was concerned about the amount of acetomenephin (tylenol) I was adding to the other things I took. He said he'd send the pain doc a report. As it turned out, what he put me on made me feel way too drugged so I went back to what the pain doc had me on and have tried to take as little acetomenephin as possible. It was at that point that I decided I was ready to find out what was wrong (I know there isn't one simple answer) even if it meant shutting down my autoimmune response. But what happened last week was the rheumatologist said he wasn't ready to go there. He wasn't sure that the high CRP related to the pain and he wanted to keep boosting my vitamin D. That was a major let down as I had allowed my expectations to go up for that appointment. My appointment yesterday was with my gynecologist and the physical was fine. I'm not thrilled that he wants me to get a colonoscopy but I'm going to suck it up since I know at my age it's important for screening and would pick up stuff the PET/CT scans I get don't. My appointment next week with my dermatologist will be a non event because I don't have much to look at skin wise. The 3 moles I had of any size have been removed (one was melanoma, one had mild to moderate atypia and one was normal). All I have left is a few freckles on my skin but they are tiny. I am an easy skin check, thankfully.The week after I see my dermatologist, I see my surgical oncologist. He's at a large research university and has been following me since my diagnosis. Advanced melanoma is one of his specialties. The medical oncologist I started seeing last December is an additional doctor and at the cancer center near home. He's only a 10 minute drive as opposed to close to an hour for my surgical oncologist. I am going to ask the surgical ONC if I can be tested for TA-90 but my expectations are very low. At the bottom of this post is an old press release on TA-90 in case anyone is interested but basically it can help show if a patient is likely to have sub clinical amounts of melanoma. However, it's only being done in clinical trials and one issue is what to do with it. With early stage patients, it can determine if they should have a sentinel node biopsy but I already had that and it was positive. For someone like me, even if I test positive for TA-90, it doesn't mean that any small amounts of melanoma cells will form tumors. I may be successfully fighting it off. Which brings me to why I want to be tested. If I test positive for TA-90 then I don't want to push for autoimmune suppressants. But, if I don't test positive, then I do want to push for what might improve my quality of life. I don't expect much. I actually expect my ONC will have a good reason to say why I can't be tested for it. That will bring me to my last appointment in this cycle which is 10 days after the ONC, and will be with my pain doc who I have on occasion referred to as Dr. Pain. I will ask if he received the report from the medical ONC. I'll tell him that after giving the change in meds a chance for the full month's prescription, I decided to go back to what Dr. Pain had me on instead of calling him for the next month script which was how the medical ONC left it. The point being that the medical ONC wrote a month's prescription but they can't give re-fills on that particular med. You have to get a new script each month. I decided not to ask Dr. Pain for the new script because I didn't like being a paranoid space cadet which is what happened when I took the stronger med. After I explain that to him I'll say, do you have any alternatives or will I need to keep risking my liver and kidneys with the additional acetomenephin I take. Who knows, maybe he'll be the one to give the autoimmune suppressants a shot but my expectations are very low. I know some people might be surprised, as much as I've educated myself about melanoma, that I'd be willing to try the autoimmune suppressants. The deal is for over two years, each and every day, I've taken 3 different scripts plus added over the counter scripts in order to have minimum pain management. I'm grateful that thus far I haven't recurred but I'm tired of it. If there is verifiable evidence that my body is mounting it's own personal immunotherapy then no, I won't risk shutting down my response. But, if it turns out that no test confirms a positive aspect to my chronic issues, I will risk it short term.

TA-90 blurb
NEW YORK, Sep 30 (Reuters) -- A new blood test can predict if a deadly skin cancer, malignant melanoma, has metastasized or spread, according to a study in the October 1st issue of the journal Cancer. This information can be used to predict survival in patients with early-stage melanoma, according to researchers.

The test detects the presence of TA-90, a glycoprotein that can stimulate an immune response. In the early stages of disease, TA-90 is found in immune complexes in the blood, and these complexes can be detected using a sophisticated type of assay.