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.

Proposed FDA Regulations of 'Lab Developed Tests': Could Cause Harm to Patients

I received this information in another post from a fellow blogger: Cancer....an unexpected journey

Please, click on the link and sign the petition. Change.org

I don't want to plagiarize Luna's post but I want to say that most NET Cancer patients receive very specialized blood tests that are not "standardized" tests and could potentially not be covered by insurance if this proposed regulation goes into effect.  I receive one that it not considered a "standard" blood test that gets sent to a specialized lab in California (ISI) and there are several more that I could get as well (a few I have had once but have not repeated them yet)...

If you are so inclined, please contact your Congressional Representative and your Senators to let them know that these proposed regulatory measures should not be passed.  You can even email them!
To find your Senators:

http://www.senate.gov/general/contact_information/senators_cfm.cfm

Find your Representative:

http://www.house.gov/representatives/find/

Email President Obama/the White House:

http://www.whitehouse.gov/contact/submit-questions-and-comments

This can affect those with all types of cancer and rare diseases for which standardized testing may not be available.

Speaking of blood tests...

I had my 6 month  tests.  Everything is normal.  My CgA is the same but my pancreastatin has gone up.  It's now at the very top of normal.  (0-135 is the range and mine is 135).  That's a small increase but I'm sure nothing to worry about.

I meet with my oncologist tomorrow.  I have to find out if they really are on my employee's health plan now.  If so, I will switch.  It'll save me some money-I think.  Not much but a little.

Merry Christmas!

I've been trying to write  blog post for the past week but never seem to have the time or energy (or enthusiasm) to do it.  It's not that I don't want to, I just don't feel like getting on a computer at the end of the day after work.  I'm actually typing this today while at work!  Bad...

I wanted to wish everyone a very Merry Christmas!

I have a blood draw in early January to check my CgA and pancreastatin.  It's been six months. Depending on those results, we'll decide whether to do a scan or not.  I don't expect my levels to have changed, or if they have, not by much.  I have no symptoms to speak of.  My one concern is that we know these tumors don't usually spew out their hormones that show up in these tests until it's in your liver (usually, depending on the primary tumor site--lung & ovarian tumors are a few of the exceptions) but what if I have tumors outside my liver?  Do we just not worry about those?  I think not but that's the feeling I get (sometimes) from my oncologist.  He did say once that anything else that shows up is going to be so small so what would you do about it?  Cut it out!

These are just the thoughts that stumble go through my mind.  I meet with him in February.

This isn't turning out to be a very positive Christmas post...

I had a moment.  I wanted to add this fantastic post on CURE magazine by one of my favorite bloggers, Tori Tomalia.  A young mother of 3 with Stage IV lung cancer.

http://www.curetoday.com/community/tori-tomalia/2014/12/recipe-for-living-with-metastatic-cancer


It's the best "recipe" ever!  Thanks Tori!

Blessings all!

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.  

Name change/blood tests

I don't know if this matters but I changed the name of my blog to: mylifewithcarcinoidcancer.blogspot.com  

I didn't like just having my name up there...  

I had blood work done last Friday.  The cancer clinic actually had my Z-tube for the Pancreastatin test so they did it right there and will send that one out. The only thing I don't like about them doing it is I don't get my results as quickly.  When the hospital lab does it, the results are online usually within a day (for the regular blood work like my liver function tests, CBC, etc.).   When the clinic does it, it may NOT get posted to my personal health record (online with them) for days and days.  I know the tumor marker tests take longer (CgA about a week and Pancreastatin about two weeks), but really, can't you get my other test results up there a little sooner?

I am curious what my WBC (white blood count) and Granulocytes are this time.  WBC was high and granulocytes was low.  My doc did not say anything about it at the time.  If they are still high/low when I see him in November, I'm going to ask...  

Here's wishing/hoping for my markers to remain low!  I'm not sure when I'll get my next scan.  Probably January or February.  This will be the longest I've gone between scans since my diagnosis in June 2012 (my first blog post).  

  

Sister's trip w/o me!

I thought I better post something even though I have no medical news to report... except I did go in for my Sandostatin shot yesterday.  It was uneventful--just how I like them (and with a $17,000 price tag, I better like them)!

Our yearly sisters trip was this week.  My sisters went without me!  They are enjoying the sun and sand of Mazatlan, Mexico.  I was sort of bummed about not going but I just don't have any vacation time at work due to my liver surgery back in Feb.  I also didn't have the money for the flight.  My oldest sis, whom I live with, has a time-share there so I only had to come up with $$ for the flight and food, etc.  Oh well, maybe next year (but I'm never going to have extra cash hanging around).

I tweaked my back on Sunday.  I have NO idea what I could have done to it.  I actually thought perhaps I slept too long... 11 hours Saturday night!  It was the latest I've slept-in for a long, long time and I felt great!  The best I've felt in years.  I went and rode Abbie and cleaned her stall but didn't twist or do anything that would have hurt my back (that I felt).  After I got home and relaxed on the couch (watched TV) I tried to stand up and just about couldn't!  It feels more like my hip but is on the lower left side so I don't know if that is considered your back or hip?  The major problem is I can't sleep!  It hurts every time I move and I sleep on my side (either) or my back.  I think I roll from side to side or back to side a lot during the night and every time I try to roll-over it hurts so bad!  Last night I caved in and took a tramadol--my go-to pain pill.  It did nothing so I got up around midnight and took an over-the-counter sleep med.  That didn't help either!  I am so tired today but I think my back pain is actually getting a little better this afternoon!  Yeah!  Of course since I don't remember actually hurting my back, my thoughts turn to cancer.  Is it cancer?  Has it spread to my bones?  Oh no!  I try so hard not to think along those lines but I know it is normal to think this way.  I decided that if it doesn't get better, I will just wait until my appointment with my Oncologist next month and talk to him, however, I'm pretty sure it'll be 100% better before then.  Whew.

The weather has gotten very Fall-ish the last couple of weeks.  Even downright Winter-ish.  It was a whopping 32 degrees this morning when I left for work.  It's warmed up to a nice 50 this afternoon.  Geez, I wish Fall would hang around a while longer!

I'm going in next week for my blood draw.  It takes at least two full weeks for the pancreastatin test to come back (maybe even three) and I want to make sure it's back before my appointment with my Onc.  Last time my WBC (white blood count) was a little high and so was my granulocytes.  I'm curious to see what they are now.  He (Onc.) didn't say anything about it so?

That's my quick update.  Sister gets back Friday night.  It's been a nice break for us.  Living together can be challenging at times!