Changing of the Guard

I met with my current oncologist for possibly the last time last week.  He's moving to another center and will be there by next spring (taking some time off apparently).  I have had mixed feelings about him leaving me (not really me but the practice).  I feel somewhat abandoned!  He's the only oncologist I've seen since being diagnosed three years ago.  He sees most of the carcinoid patients in Utah and is very knowledgeable about it.  He's been easy to talk to, supportive, and I don't usually wait very long to see him.  At our last visit, he did tell me that he would be more than happy to see me at his new place, which it Huntsman Cancer Institute.  Recently designated as a Center of Excellence (and it really is). Why wouldn't I want to go there?

The main reason I don't want to go to Huntsman is convenience.  I know that is not a very good reason but with my current work location, I am minutes away from my current cancer clinic.  I can go in after work to get my shot.  I rarely have to leave work early or take time off to go in.  If I were to move my care to Huntsman, I may not have to leave early to go get my shot but the drive home afterwards could be brutal.  It's right by the main Hospital and campus of the University of Utah so you get a lot of traffic after 5pm  One day, I was at the hospital for a work meeting, which ended at 5pm.  It took me TWO hours to get home!  Also, no one at works knows about my cancer (there are a couple of people but not my supervisor) so I don't want to start taking a lot of time off.

What my oncologist and I decided was to wait and see.  Where have we all heard that before!  I told him I'd try another oncologist and see how it went.  I'm going to see the onc. who the president of our support group sees.  I've heard he's good but he gets waaaaaaaaay behind in seeing patients because he spends so much time with each (which can be a good thing).  My first appointment will be in February at 11:30am.  I think I'll take the entire day off just in case!

We also discussed my next scan.  I was surprised to hear him (my onc) say that he is now leaning more towards MRI's for the liver than CT Scans.  WHAT?  Now you say that?  I believe it was last year when I asked about an MRI over CTs.  He said, oh well it's much harder to read an MRI and since you've had CTs, it would be like comparing apples to oranges.  Well yes but they are better for imaging the liver!  One of the things I've always liked about him is that he's willing to let me decide. I decided to go with a CT scan for now.  Since I'll be seeing a new oncologist, we'll have something to compare.  I am getting a triple phase CT.  usually, I just get normal ones (whatever that may be).  I'm planning on asking for MRIs going forward.

If I decide to go to Huntsman, I'll go in August.  He'll have had time to settle in a bit.  I've also said that if I have progression, I would go up there anyway.  They are a research facility and would have more possible clinical trials that I could try to get into.

My blood work was all good!  I don't think my pancreastatin is back yet.  My CgA was 4 (0-5 range). Last time it was 3 so up a point but that is not a big deal.  Normal is normal.

3 years...

I wasn't sure I was going to write anything about my 3 year "Cancerversary."  Yes, I'm happy that I am still here.  I'm not "celebrating" getting a cancer diagnosis although I doubt anyone does.  It is more of a time to pause and reflect on the past 3 years; acknowldge that I am still here and have few issues... 

Part of me can't believe it's been 3 years already!  Where does the time go?  At other times, it seems like I've lived with this ROCK over my head forever. 

Why a Rock? 

We've lost several fellow ZEBRAS recently.  It seems like they are doing well, then have a few issues that quickly accelorate and then they die.  It's like a rock slide.  Everything is smooth sailing hiking and then BAM!  Rock-slide and you are in deep shit doo-doo. 



Here's to 3 more!

Happy New Year!

Happy 2015!

I had one goal for 2014.  I'm not calling it a "resolution" because I had little control over it.  My goal? No major surgery!  Yup.  I made it.  Nothing major in 2014.  Only one minor procedure completely unrelated to cancer.  I'm not sure if I should set any goals for 2015.  I could keep with the same theme and probably be safe.

A few personal milestones in 2014.

• I was laid-off from my job of 3 years after a cancer diagnosis and two surgeries.  This was after my boss told me they would do whatever necessary to support me.  Right.  Lay me off me and take my insurance away unless you sign this "release" that states you won't sue us! Blackmail?  You bet!  Stress?  Nah.  No stress there.
• I got a job after 2 months.  It's a great job.  I like it a lot.  I actually work for an insurance company now.  Ironic?  I think so.  Oh, I also make more money than I did before (but my insurance costs me more and I had to switch around some doctors but not my oncologist).
• Remained stable according to my blood work (last scan was in February, 2014 a few days after I was laid-off my job).  I have not had a scan since. 
• Attended my first Dressage show with my horse Abbie.  We got a second place.  It was a really small show but I was proud of how well she handle the "show" atmosphere.  It was her second show ever.  

Up in 2015: What's next?

• Bloodwork scheduled for next week.  I'm not expecting any changes.  I still feel good with no carcinoid syndrome symptoms.  I do have a lot of headaches but this could be from the Sandostatin or it may be my sinus's.  I'm calling a doctor tomorrow.
• Schedule a scan before July 1st since that's when my insurance deductible kicks in again.  since I've met my deductible, I'd like to get it before I have to reach it again.  I have not (for the first time since diagnosis) met my maximum out-of-pocket.
• Switch insurance to my employee health plan.  My oncologists clinic is now part of our network.  I have no reason not to switch.  I'm very, very excited as this will save me some $$$.
• I'd really like to go to another couple of Dressage shows.  I'm not sure if I can afford it but I'm going to try.
• Go on a sister's trip.  Its been too long!  Even if we keep it domestic.  

Check out the TOP TEN Highlights of the Year for Carcinoid-Neuroendocrine Cancer
from The Carcinoid Foundation website:  https://carcinoid.wordpress.com/2014/12/18/10-highlights-of-the-year-2014-for-the-carcinoid-and-neuroendocrine-tumor-community/

1) Gallium 68 Clinical Studies
2) PRRT Clinical Trials
3) FDA Approves Lanreotide for Gastroenteropancreatic Neuroendocrine Tumors
4) Immunotherapy for NETs
5) Global NET Patient Survey (yes, I took part in this)
6) NET Conferences
7) NET Cancer Day
8) ONCLive Features Series on pancreatic Neuroendocrine Tumors
9) Warner Advocacy Award
10) NETs in the News and on Television (link to the BYU men's basketball coach here in Utah w/PNET.


Here's to a safe and healthy 2015!

Normal is...normal!

It took me 20 minutes to get logged into my blog.  Loooonnnnnnngggg story.  I almost gave up.  Sometimes I feel like "why bother".  Not that many people read my blog--not that I blame them.  I don't have much to say and not much is going on in my cancer-land.  Then I remember those few who have reached out to me and said "thank you--your blog has help me!"  Ah, that is music to my ears and why I started a blog in the first place!  I don't talk much about my day-to-day life because this isn't what this blog is about and is not the purpose of it.  I wanted an easy way to update family and friends on my medical condition and to help other suffering with this or any type of cancer.

So, getting back to my post title, Normal...is normal!  All my bio-markers (or tumor markers) came back NORMAL!  Awesome news right?  Well then why do I feel so unsettled?  I guess because deep down inside I really need that scan, that peek inside, to tell me everything is OK.  I am still on the fence about asking for a scan. I want one but I also think that everything is fine.  Maybe better than fine.  Maybe my little tumors decided to vacate the property (of my liver) and disa-fucking-peer!  That would be funtastic!

This is what I've decided (for the moment anyway):

1. I am not going to worry about it.  I will see what my oncologist says.  
2. I will voice my concerns (hey, nothing growing in the liver but what about elsewhere? Even though I know what his answer will be--which is "whatever is there is small so what are you going to do about it?)...
3. If I wait, how much longer do we wait?  6 months?  3?  4? 5?

That's about it.  No major issues really.  Oh, my heart palpitations have been going crazy the last week or so--until today.  Today they have not bothered me at all.  Weird.  I don't know what they are related too.  If they continue, I will mention it to my oncologist.  He said if they came back he would send me to a cardiologist.

I've found a new GP.  I have an appointment next week.  I just need my thyroid meds refilled and I forgot to have my OBGYN check it before my insurance changed.  I HATE going to a new doctor just for that but I saw another doctor in this practice years and years ago--he's no longer there (I was sad cause when I found his name on my insurance I was very happy).  I really liked this doc.  This was about ten years ago. I remember his nurse was in with me before the doctor came in and when she saw that both my parents had colon cancer, she told me I MUST go get a colonoscopy NOW.  I wonder if I had, would they have found my cancer then while it was still small and hadn't spread?  Could I have been CURED?  I will never know.... and it doesn't really matter now anyway.  

So, this new doc.  I am going to ask him for my complete thyroid panel, Hydroxy 25 Vit. D test and I will talk to him about my heart palps but my guess is once he see's that I have carcinoid, he won't want to deal with anything outside the normal stuff. Maybe my blood pressure too--it's a little higher than it was pre-cancer.  Used to be low and now I'm definitely in the pre-hypertension to hypertension range. I also need to go have my yearly mammogram.  I'm about a month past due.  I dont' have anyone to send the results to so I decided to wait.  I will get this new doc to order it for me.  I'm not sure with my new insurance where I can go.  I hope I can go to the same place but its doubtful--they don't play well with outside insurance.  I just don't know how they compare them if they don't have them, you know?  I'm not worried about it.  I'd skip it this year but I'm so lumpy I don't think I'd know if I had a "new" lump to be concerned about.  

My results of the Neurokinin A test was..... 20!  Remember, less than 50 is the desirable range!!!  My Pancreastatin was also in the normal range!  It was a little above normal last time so it's come down even more!  This is such good news all around!  

Thanks for reading!

  

A quick update

I haven't posted anything in a while because there isn't much to tell you about.  I did get some blood work done last week and so far, all is good.  CBC and blood chemistry.  Liver function tests included in the blood chemistry and those are all normal!  I haven't seen the CgA (tumor marker) results yet but it should be available this week sometime.  My Pancreastatin and (for the first time) Neurokinin A was sent to ISI in California so those take 3 weeks to come back.  I probably won't know those results until I meet with Dr. Whisenant on the 19th.  I might be able to get the results through LabCorp. but I'm very frustrated with their website right now.  I've tried to log-in all morning but it wont' take my password and when I reset it, it resets my Microsoft password. Weird.  Frustrating.  I give up!

I did get my appeal approved for the last CgA test I had done through my old insurance.  Talk about stupid. They paid $22 of the $236 charge, which is the "allowed" and "contracted" amount.  I owe nothing.  So, if no insurance, a simple blood test costs over $200!  Crazy.  At least with BCBS, I don't have to worry about pre-authorization for blood tests!  Duh.

I am still not sure about NOT having a 6 month scan.  Dr. Whisenant said he didn't think I needed one unless by tumor markers increased but that it was up to me.  I know I probably don't need one but I'd still like to know what is going on. I know it won't make any difference treatment-wise unless I had a lot of progression or new tumors (very unlikely) and we should see that in the tumor marker blood tests first.  I have read other patients stories about having normal blood tests and seeing tumor progression anyway so I still worry.  I guess I will talk to the doc about it when I see him.  It's my life after all (and my money too)!

If you are curious about Neurokinin A (NKA), it is more of a prognostic blood marker test.  I found this in a study paper:

Turner has shown in a retrospective study using a clinical
database comprising 117 midgut carcinoid patients that NKA
is an excellent prognostic indicator. In the patients who
presented with NKA > 50 ng/l (45 pmol/l) survival at 5 years
was 18%, whereas in the group who presented with NKA
levels lower than this threshold the survival at 5 years was
70% 

I think the prognosis is a bit better than listed above.  As much as 84% at 5 years for the <50 group.  I wanted this test run a long time ago but didn't push for it.  I didn't have to push at all. I just asked him (Dr.) to do it and he did.  It'll be interesting to see what my results are.  Although I don't put much stock in just numbers and statistics.  We are all so different.  Every patients disease seems to take a different clinical course.  Its one of the reasons it's so hard to treat.  

2nd "Cancerversary"!

Well, today its been two years since I heard the life-altering news, "you have cancer"!  Wow.  What a ride...

I wasn't even going to post anything more about it. I'm just feeling "blah".  Not really into it nor do I feel like it's a time to celebrate.  I'll never be "cancer-free" again.  I don't know how long I have.  Hopefully years before progression necessitates any intervention.  I've been stable since my liver surgery in Feb. 2013.  16 months.  That is GREAT!  (See, I'm trying to be positive.)

So many have died recently.  One young man, 6 months after diagnosis.  Another 5 years. Another 8 1/2.  Lindsey 3 years.  You just don't know how long you've got.  No one does but we're standing in the middle of the road waiting for that bus to hit.  All I hope for is better treatment options by the time I need something!

Here's to another 2 years with the good quality of life that I have right now!  Here's a "toast" to all those making this journey with me!

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).

NET Cancer Day is November 10th

I was diagnosed with a Neuroendocrine Tumor (NET)/Carcinoid Cancer in June of 2012. I had never heard of this type of cancer before.

Most cancer organizations do not lend support for research or awareness of this particular cancer.  So, those 
of us who are being diagnosed are trying to raise awareness.

NOVEMBER 10th is NET Cancer Day to raise awareness of neuroendocrine cancers around the world. 

What you may not know is this:  This cancer usually goes undetected or misdiagnosed for years, because assumptions are made.  Doctors are taught that when you hear hoofbeats, think horses not Zebras.  The hoofbeats that are heard in our cases ARE zebras, not horses. In other words, we are not the obvious.

There is no cure.  Only rarely can a tumor can be cut out and all is good.  Most of us are diagnosed at the Stage IV level when it has already metastasized to our livers and other organs. In some cases, radiation and chemotherapy are not usually an option. I am grateful that this is usually a relatively slow-growing cancer.

KNOWLEDGE is power. I ask that you make it your mission to learn. Go to the NET cancer/Zebra/Carcinoid pages and learn more. Talk to others about their stories/experiences. LEARN more and more and more.

Please make the zebra ribbon as recognizable as the other ribbons. It starts with you committing to tell someone else’s story…and keep telling it.

It is so important to raise awareness with others.  And please support those you know, and show love to the people in your life…cancer or no cancer.

http://netcancerday.org

Quick Update on Surgery

I can't believe I've been home for almost a week!  It'll be a week tomorrow.  My surgery was not quite as we planned.  Instead of taking my entire right lobe, he cut out the biggest tumors. He did take a few sections from the left lobe that had the biggest tumors and then did RFA on a few.  I was actually pleased with this news.  It has made my recovery much easier and should give me those extra years we were hoping for.

I did on have any drains when I woke up. No NG tube.  I really didn't feel too bad.  They did take me to ICU for one night to keep a close eye on me.  A few days later I asked Dr. Kim if he had any trouble with my blood pressure or "stats" during surgery and he said I was "steady eddie".

When I arrived in pre-op it went a little crazy as I was the last patient they took back (not my fault--I was on time along with 30 other people) and they were ready for me!  I had two anesthesiologists, 3 of Dr. Kim's Fellows, two or three nurses, all doing stuff to me.  IV's, blood, EKG.  I did ask the anesthesiologist if he used "octreotide" during surgery and he said, yes, we will.  I felt much better about things after being assured of that.  I had 3 IV's one in each wrist, one in my elbow and then they put a jugular line in during surgery.

I'll post more details tomorrow.  Just wanted to give a quick update.