I had my appointment with my Oncologist on Tuesday. Nothing new to report--blood work is good! My CgA is again in the normal range at 4 (ref. 0-5). Yippee! My pancreastatin was finally sent to ISI (Interscience Institute) (http://www.interscienceinstitute.com/) and took almost 3 weeks to come back. It is 166 with a range of 0-135. It's hard to say if it changed any since my previous tests were sent to a different lab with a different range but it's about the same % over the "normal" range.
ISI is the leader in neuroendocrine tumors (NET's) Biomarker Testing!
My next appointment will be in March so I'm going to have a scan the end of February. This is the longest I've gone between scans! It does "freak me out" a bit but I know with my good labs, things are quiet for now (on the tumor front).
We (Onc and I) did discuss clinical trials and he explained more how they work and how new drugs/tests get approved by the FDA. That came up because of the NETTER 1 trials (PPRT) that have finally started here in the USA. This isn't a drug but a radioactive isotope. I sure hope that if I need this treatment down the road, it will be approved here. I'm think it will take at least 10 years!
I am feeling pretty good. I still get pretty tired by the end of the work-day but honestly, I can't say if I'm more tired now than I was before my diagnosis.
My next procedure is this coming Monday. I'm going in for my colonoscopy! I'm not looking forward to the prep. I'm hoping this time it is a bit easier on my system since I don't have a bunch of tumors in there blocking everything from moving through! When I "prepped" the first time (June, 2012), I had a lot of pain and nausea. I'm hoping for an easier go round this trip! My only concern is that on my last scan, it showed "wall thickening" near the surgical site that could represent metastatic disease or could be reactive thickening due to the surgery itself. I'm definitely hoping for the later!
I will follow-up after my procedure on Monday. Can't wait to see my cute gasteroenterologist again on Monday!
Take care...
Hi, my name is Desirae. I was diagnosed with a renal carcinoid tumor that resulted in a radical left nephrectomy back in 2009. In 2010, they found a spot on my lung and didn't tell me. It grew in 2011 to 7mm, so they told me. My last CT (June 2015) showed that it has grown to 12mm and changed shape, so they are thinking it's metastasis. My cgA tests were always elevating, so my oncologist stopped testing me b/c he didn't know WHY it was elevating. (Nice, eh?) I know the normal range is 0-50 and mine started out at 60 and increased gradually up to 98 (last test done 3 years ago). My oncologist is NOT a specialist. I've seen a specialist in Portland, OR, but unfortunately he's a cocky airhead. In fact, he thinks he did my nephrectomy and he did not, but actually told his assistant his memory of doing it. Uh....anyway...do you know anything about cgA? I can't find numbers from other patients online anyway. I just want to know if my doctor is being stupid for discontinuing my cgA tests. 5-HIAA tests have always come back fine, but when I asked my doctor if they had done that test while the tumor was still in me, he said it would have probably come back fine then too, meaning that test is useless. Any input you have would be appreciated. BTW - I'm almost 37 and was 30 when the removed my first tumor.
ReplyDeleteDesirae, I replied through email but let me know here if you got it! I have a few more suggestions...
DeleteI'm not seeing it - what email address did you use?
DeleteDesirae, I'll try to remember what I said. First and foremost, they should be following your CgA--especially if it's been rising. You are definitely the rare of the rare! I think kidney primary is extremely rare. Remember, I'm not a doctor so all this is just my opinion! If it's rising, it's probably because of teeny tiny micro-tumors that are too small to show up on scans. I was curious if you saw Dr. Pommier in Portland? I was told to be careful about seeing him since he can be super aggressive with liver debulking. Fortunately, I found a local surgeon here that debulked mine, however, he probably could have been more aggressive! On the lung, I too have a small nodule that they said didn't need any follow-up. I guess they are common, however, if growing, it should definitely be watched! My CgA is 3 right now. The range for my lab is 0-5. They forgot to check it last month so I have to go back in. It's been 6 months. I only have blood work every six months and a scan once a year--for now. Please keep in touch and let me know how you are doing.
DeleteThat is the specialist I was referring too...I'm not impressed. I've seen him for over a year now and he's never tested my 5-HIAA or my CgA. He's never asked me about any other symptoms I've had ( I get the flushing and diarrhea and have told him about that) and he just says "now get out my office, you healthy person, and let a sick one in here!" It's really frustrating. I think I'm going to ask my PCP to order a CgA and see where it's at. I just hate feeling like I have to take the reins from the doctors. And yes, I hear that all the time from every doctor "I've never heard of a renal carcinoid" or better yet "I've never heard of Carcinoid"...it's very encouraging :-/ Thank you for your blog!
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