Wednesday, September 12, 2007

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.


Smalltown RN said... you are going through what you have to and still being able to post such beautiful and brilliant photos....they are stunning.

Now know I have only heard of that and used it in the practice of sepsis. For patients who's bodies have just overwhelming been infected with sepsis they become candidates for Activate Protein C...oops I might be speaking out of line here...I need to go back and re read what you said about protein C...

Thanks for visiting my blog...I am curious to know how you found me...I am glad you did....and I will be back...

Smalltown RN said...

ah it was C reactive protein you mentioned ...I am going to have to do my homework and see if they are the same thing....

Carver said...


Thanks for visiting.

I'm going to leave my response to how I found your blog on my blog and your blog since this tangled wide world web is sort of interesting, at least to me, ha. I came to your blog initially when I started reading some medblogs but I didn't bookmark your site and lost it. In the back of my head I hoped I'd find it again. I found medblogs through SaraT who I got to know through an online melanoma support group. Sometimes I check out blogs from comments in the blogs of people I get to know. Sarah sadly lost her battle with melanoma.

I had started reading a few medblogs I found through her and was touched by the support and comments from those in the medblogging community for her. Then I stumbled on Addicted to Medblogs and she totally cracked me up. I found JMB's Nobody Important Blog through Addicted to Medblogs and I found PhotoHunters through JMB. Then I rediscovered your blog, and some others that I enjoyed but forgot to bookmark from early medblog browsing, after I started participating in PhotoHunters. I may have to cut back soon on some of my blog reading as work and eating and other things may get in the way but I'm so glad to have found your blog again because I like it and I'm enjoying the PhotoHunters. Is that clear as mud, ha. Take care, Carver

PS CRP is an abbreviation for C reactive protein although it may be used for other things. I think an elevated CRP may be good in fighting infection. In someone like me it's hard to know why it's elevated as some people fighting cancer, infection, autoimmune diseases, can have it elevated and sometimes even with heart disease. In my case my heart is almost certainly fine. Since it's been up a year infection and some other things seem unlikely. The autoimmune diseases are a candidate but the problem is treating them for me is iffy.

Anonymous said...

OK, I know this sounds like quackery, but someone very close to me, who can sometimes give in to quackery, gave me this link. She has fibromialgia (is that how that's spelled?) and nothing else has helped her. She swears it works even though it sounds like quackery. Maybe it does. Just thought I'd pass it on becuase of your neuropothy and facial pain. It's the same for her. She said that the free manual was all she looked at and it is an easy read with big print for so many pages. I'd be interested in seeing if it helps you or what you think.

I haven't tried it, because I haven't had the time to read and I resist what appears to be quackery. I might though, what can it hurt?


Carver said...

Hi Katrina,

Thanks for the link. I'm not closed about anything although from a quick look at the site, I'm a bit like you in terms of resistance to what might be quackery. I've been through physical therapy, massage therapy, lymphedema clinic as well as the 5 specialists I see and have considered going to the integrative medicine at the university where I'm treated for melanoma. I don't want you to get me wrong, I have been helped. When things were at their worse, I could barely walk and was extremely symptomatic. At this point, my symptoms are managed. I just hate to feel like it's mostly bandaids. The do know some of the reasons for my problems but the autoimmune disease issue is up in the air. I will look at the site you linked again. Thanks for visiting my site and take care, Carver

Theresa said...

only witnessing what you are going through 2nd hand- I hope you know what a great inspiration you are to the people reading your site-not to mention the knowledge you are giving other people-keep fighting
Loved the blue flower picture very vibrant

Carver said...

Hi Theresa,

Thanks so much for you kind words. I appreciate it. Take care, Carver

jmb said...

Oh Carver, I do feel for you. You have had a terrible health row to hoe and it hasn't been completely successful.
It is difficult when the specialists don't agree on your treatment. It does seem you have educated yourself thoroughly about your different conditions and knowledge is power.
I do hope that things will improve for you.

Carver said...

Thanks so much JMB.