One month and counting down...

One month until my CT scan!  Seems weird to be counting down to a scan!  I am somewhat regretting my decision to wait 7 months between scans instead of the usual 6 months!  I've said before that this is the longest I've gone between scans since my diagnosis.  Most have been no more than 4 months apart. That was, in part, due to liver surgery and the issue I had after.   See my post from 4/5/2013.

My scan is scheduled for the end of Feb. with my Oncologist appointment the following week.  I have always seen my reports before my doctor (except for my very first scan--I didn't know I could get the written report online).  I've never really felt Scanxiety before but I am feeling it now.  Even though I tell myself that nothing will have changed, this is a slow-growing cancer, I still have that anxiety of all the "what if".  What if they've grown?  What if there are new tumors in my liver? What if they've taken over my liver? What if they are now popping up everywhere?  I know that this is very unlikely.  I will genuinely be surprised if I am not still dancing with Stable Mable!  Even with that said, I am still going to worry.

I will be getting my blood work done next week so if anything is truly amiss, it should show up there.  I don't have to wait long for most of my test results.  Only that damn pancreastatin that takes 3 weeks to get back! That is why I'm getting it so early.  I want the results to be back before I see my doc!

Now I'm throwing another wrench into the "plan".  There is a clinical trial at NIH (National Institute of Health) in Bethesda, MD for the Gallaim 68 Dotatate Pet/CT Scan.  I am not sure that getting the Gallium scan right now would be that helpful (unless there is new stuff going on) but you go back every year for five years for a follow-up scan and this could be VERY helpful.  The Gallium scan is so much better at "seeing" NET tumors than either CT, MRI, or Octreotide Scans are.  It is not approved by the FDA yet so most patients end up paying the costs themselves to get this scan (anywhere from $4,000-$6,000.  This trial is free!  The only thing I would have to pay for is my first flight out and back.  Returning flights are reimbursed. I can stay in-patient and not pay for room or board.

Clinical Trial at NIH

If I'm accepted into the trial, depending on when they would want me there, I will have to have an octreotide scan, CT scan and then the Gallium scan (unless my last octreotide and CT scan is within six weeks and it's been 20 months since my O-scan and you know how long since my CT scan).  That would be a lot of scans and radiation in a very short amount of time.  I think you stay for 3 or 4 days.

I'm gathering my info. to send in to see if they will accept me.  I am not sure I would be able to participate though since I have no money to pay for the initial flight out and back. It's looking like between $500-$1,000 for a round trip ticket. Argh.  I just figure I'll worry about that hurdle after I get accepted.  I don't know if I should talk to my doc about it.  I'm sure he'd be 100% for it since it would save the insurance co. money on my next scan!  I could skip my Feb. scan if they wanted me out there before that -- they will send him all results.  I just honestly don't know what to do.  I would be going alone and that just sounds crappy.  I mean, I wouldn't want to make someone sit around for four days being bored to death while I'm getting scanned. I am the only one who can stay in the hospital.  You can't have anyone stay with you.  It just sounds so lonely though.  Of course, my ex lives nearby so I could always ask him if he wanted to come and see me.  Show me the sites. You can leave the hospital.  You don't have to stay 24 hours a day.

The only thing I don't have is my surgery notes.  I think I can get them from my oncologist.  I know they have EVERYTHING in my file...  I'm going to ask when I go in for my blood draw and shot.  I'll keep you posted.

Vitamin D Toxicity--Question for the Doctor?

I was going to call this post title "Update that really isn't" but then decided to just stick with an interesting question that I had come up today.

I went in yesterday for my butt dart  Sandostatin shot.  This is #19 (but who;s counting, right)?  I had to wait a while for them to call my insurance and get it approved!  I guess they have to do this every year.  At first I was a tad bit miffed.  I thought, why can't they do this BEFORE I come in?  Of course, the main reason would be that  they don't have my chart in front of them until I get there and did I really care if I had to wait a few extra minutes?  Well, NO, I didn't.  I was waiting for the front desk girl to get my scan scheduled anyway so I really was in no hurry.  I had no doubt it would be approved as this is pretty much the only STANDARD OF CARE for Carcinoid Cancer.  The nurse came by and said, we got the OK so I'll mix it up now.  It shouldn't be more than five minutes.  Hmmm.  Isn't is supposed to sit for 15 minutes no matter what???  She came back and got me about five minutes later.  When I was following her back she told me that she had learned a new "trick" on getting it to mix up better/faster.  She said if she breaks up the powder before adding the liquid it mixes more quickly.  OK then.  Guess we'll see.  It was actually a pretty painless shot and I'm not even very sore today.   Maybe it was her new mixing technique or maybe it is just luck.

Other than my blood pressure being high, everything else was ok.  They only weigh me, take my blood pressure and check O2 levels when I go in for my shots.  No blood work is done.

I did ask the nurse to ask Dr. W. about my 3 month tumor marker tests since he did not give me orders for them at our last appointment.  She said that they didn't need any orders.  They could just do whatever I normally have done the next time I come in for my shot.  Hmm. Cool.  The only problem is I am supposed to FAST for one of the blood tests and I usually go in for my shots late in the day.  That was easy to remedy. I rescheduled my shot for 8:30am and they will draw my blood at that time.  I had to run back and ask sweet Evelyn, the MA (medical assistant), to make sure she had a z-tube for me.  She said she'd have to order one (she came and got my chart while I was still waiting for my shot so I know she did follow through).  My biggest concern is that when I get there, they will not know what blood test to do!  I know i can tell them but I'm guessing they would actually need orders from the doctor.  We will see (that seems to be a theme running in today's post).

Getting back to the title of my post today, Vitamin D and possible toxicity?  I read an article today on Livestrong titled 9 Ways to Help Avoid Vitamin D Deficiency:  http://www.livestrong.com/slideshow/1009221-15-ways-vitamin-d-winter/?utm_source=newsletter&utm_medium=email&utm_campaign=0108#slide=10

I have read that Carcinoid patients are often Vit. D deficient.  I believe the causes are from Sandostatin, which can cause malabsorbsion, and from the intestinal surgery and cancer itself.  I've been taking a Vitamin D3 supplement since after my first surgery back in July 2012.  What caught my attention was the slide #10 about supplements.

While vitamin D consumed through food isn't known to cause toxicity, going overboard on supplemental vitamin D can lead to serious complications, such as heart, arterial and kidney problems.

This gave me pause because for the last year my creatinine clearance has steadily declined.  I did ask my oncologist if I should be concerned as he had never mentioned it.  He seemed surprised that is was below normal and thought it would be higher.  He explained how they determine that number (which is an estimate) and said he wasn't worried about it.  I thought I had mentioned this in an earlier post but I couldn't find it so perhaps I didn't.  If I did, sorry for the repeat!  When I read the article and the part about too much vitamin D causing possible kidney problems it made me wonder...  could I be taking too much?  The only way to find out is by a blood test called 25-hydroxy vitamin D test.  I think I am going to request this test.  I have my yearly appointment with my OBGYN tomorrow and she should have me get a thyroid test so I might as well do this one too.  I'm pretty sure she'll be on board with it.  I may ask for the serotonin to be done again too (she did my last one--my oncologist does not test this).

A week ago I got bucked off my horse.  I have not come off a horse in at least 6 years (I can't even remember the last time).  She has never bucked with me like she did this day.  I pretty much decided to bail off because I felt it was only going to get worse.  Luckily, no one else was in the arena and the dirt is fairly deep (but not so soft).  I landed on my right hip and back.  I wasn't hurt (except for my pride) and nothing was broken!  I did end up with a very sore mid-back and hip.  It has been getting better except I am now sore to the touch around my ribs in my back.  I think I probably bruised them.  I'm just glad I didn't break anything and that I didn't hurt my neck!  In fact, it hasn't hurt at all, which is pretty amazing considering how bad it is (degenerative disk disease).