How Time Flies-Thanksgiving

I went in for my Sandostatin LAR shot on Tuesday.  I had a nurse I'd never seen before so I was a little nervous about the shot.  She was excellent!  Didn't hurt at all.  Hurt like hell after--it is hard to explain.  It's like you have a big ball of ground glass in your but cheek and it makes your entire leg hurt and not want to work.  Mainly walking up stairs is very difficult.  It's like you can't lift your leg up.  That lasts about two days and then it's just a little sore at the injection site.  This nurse actually gave me the shot a little more to the side of my cheek than they have before.  It seems each nurse gives it in a slightly different place.  Maybe they have their "sweet" favorite spot or something.  I was hoping to get the same nurse as the last time.  She was so nice and told me that Novartis was coming in the next day to give them a class on giving the injections.  Novarits is the maker of Sandostatin LAR.  I wanted an "update" on whether they learned anything new!  She was there though and said "Hi, you look so nice"...  I had on a skirt, which I rarely wear.  I'm a pants kind of girl.

I did ask for my pancreastatin results.  They couldn't find it at first so after I got my shot, I waited for a few minutes while she tracked it down.  At first she told me 111 and I said, no, that is my CgA level... hahaha.  Good news though!  It is down to 306, which is less than 1/2 of what it was!  Normal is <150 so while still high, it is coming down.  Of course, some docs totally discount this test if its not done by ISI.  ISI is a specialty lab in California that has created special tests for carcinoid cancer.  The pancreastatin is very particular to how it is done.  My next labs will be drawn at the cancer clinic and sent to ISI.  My oncologist was surprised that they were sent through ARUP.  It'll mean throwing these first two out the window, but that is ok.  I'm still wondering if I shouldn't be having my Serotonin level checked again.  I may ask to have that added on when I go in next month.  Time is going by so fast....

I still have my moments of despair...  I read about all these other patients that have had all kinds of liver surgery and treatments and just wonder why?  Why was I not offered ANY treatments at diagnosis?  So frustrating to think that my insurance company is dictating my future survival!  I try not to think about it too much or it drives me nuts.  I know we have a plan and I'm hoping to stick to it.  I worry that if my next scan shows no growth, then they will say--you are stable, why do anything????  I read that if you can get 90% of the liver tumors out, your 10 year survival chances are over 80%.  That is why I want them out!

On a brighter note, I am going over to the church tomorrow night to help clean.  I'm on the cleaning committee.  Then Saturday night we are having the family Thanksgiving dinner because no one is going to be around on Thanksgiving Day.  We're all heading different places (well, mainly it's my sisters kids who are scattering).  My sister Sue, that I live with, and I are going to drive down to St. George to my other sisters house for the entire weekend.  We are not going to cook a thanksgiving dinner though.  Too much work just for the 4 of us. We'll go out to eat!

I am so Thankful for my family, my friends, my new Zebra friends and that I'm as healthy as I am!

I wish everyone a safe and loving Thanksgiving!

Mexico Pictures/NET Cancer Day...

My new hairdo and I'm rockin my Zebra stripes for NET Cancer Day!

Today is World NET Cancer Day.  The goal is to help raise awareness for our often mis-diagnosed cancer.  Came home from Mexico to 74 degrees for two days and then yesterday, it snowed!  It snowed about a foot last night and today!   I took Sookie for a walk and she got so full of snowballs I had to throw her in the tub!  Now she's all clean and soft but not sure how to keep her from getting snowballs. 

Date night tonight so I have to run... We're going to go see Flight with Denzel Washington.  I didn't want to see it before flying across the country and over water!

I'm Baaaaaaaaaack and NET Cancer Day is Here!

Mexico was great.  Didn't do a lot , mostly just laid around in the sun and relaxed, which is what i needed the most.  I felt pretty good most of the time.  I had some bloating and constipation issues but I get that when I travel a lot anyway.  I tried not to eat too much for this reason.  I did eat plenty and drank a few "Miami Vice's" to boot!  Not sure how but I lost a pound.  I felt like I gained weight but it was probably just water.

I know I shouldn't worry about my weight.  I should eat whatever I want and not worry about it.  The truth is, I still care.  I like being "thin".  I'm 112 lbs and 5' 5".  That's not too thin but I know I don't need to lose anymore weight!

This Saturday is NET (Carcinoid) Cancer Day around the world!  NET stands for neuroendocrine tumor.   We don't get a month yet, only a day and it has been fought for across the USA State-by-State to be officially recognized.  Utah is not one of those states recognizing it as of yet. I hope to be more pro-active in the next year and get a support group started and help raise awareness of NET Cancer.  That will be another post.

Regarding NET Cancer Day:  I've learned that not a lot of cancer organizations lend support for NET cancer research.  Most research is privately funded.  We need to help raise awareness of this cancer to increase research funds and patient support!  If you are interested in learning more, go to http://netcancerday.org/

So on Saturday, wear your zebra print or something black and white to help show your support of NET Cancer!

Bless you all-- I will post some pictures from Mexico when I get them downloaded!

Vacation Time & Doctor's Visit

I got a call from Dr. Pieper's office yesterday.  She's agreed to see me!  Woot woot!  My appointment isn't until December 21st though, however, I'm on the cancellation list so if someone cancels, I may get in earlier.  I'm not worried about waiting until December though.  I just want to find out if this ovarian cyst is really just a cyst...

Off to Mexico in the morning!  I will post about my vaca next week.

Hugs to all....

I'm heading to Mexico in two days!  I'm going to a resort just outside of Cancun.  I'm so excited to get away!  I just need some major relaxation...

I called my nurse practitioners office last week to follow-up on my ovarian cyst and fibroid issues.  She's no longer there... might explain why I never heard from her after my diagnosis.  I really thought she would have called me and when she didn't, I honestly felt really bad.  Since she's gone, the girl I spoke with said they would just refer me to an OB-GYN, which is what I'm sure Julie (NP) would have done anyway.  They gave me the number for the OB-GYN Center at IMC (the hospital that I had surgery at and usually go to for mammograms, etc.)  I called and the scheduler lady who answered was very, very nice.  I told her what was going on and she suggested that I see Dr. Pieper.  I'm still waiting to hear back from them on whether this Dr. will take me on as a patient.  I guess she doesn't usually take new patients but with my "history" she might see me.  I'm hoping to hear from them before I leave on Wednesday.

I saw that my Pancreastatin blood test was finally in but it doesn't show the results on-line.  I did call the  cancer center to get my results but have not heard back from them.  This was last Monday!  I guess I'll call again today.  I just want to know if it went down or not  It was 667 and the normal is <150.

I met my first real fellow Carcinoid survivor!  I went to lunch last Friday with my long-time friend Marc, who also knows a man with Carcinoid.  He met us for lunch. He is 67 now and retired.  He was diagnosed 15 years ago and has had 3 heart surgeries.  All that serotonin that these tumors can emit, damage the valves of the heart.  He was diagnosed before Sandostatin was on the market so he had a lot of damage.  He's been on Sando now for 8 years and is doing well.  He's had radio frequency ablation to some tumors in his liver and he said he has a couple in him abdomen.  His big concern for me was my Serotonin level and that I have a Cardiologist.  The haven't checked my level since right after my surgery and it was very high, 1700+.  Normal is below 450 I think... might be even less.  I think I'll ask to have it checked when I go back in for my next round of blood tests.

So off to Mexico!  I will try and post some pictures when I return.

Prayers for Sunny!

Today I read a blog from a fellow Carcinoid Cancer Survivor.  She is a true warrior.  Her name is Sunny and she has a blog and a book chronicling her fight to survive.  She's asking for all our prayers at this time.  Her cancer seems to be spreading quickly.  I was very distressed when reading her new post.  She has been through so much.  I prayer for a miracle to help her continue her battle. My prayers go out to her, her boys and her husband. 

There are several good "blogs" out there and I will try to add the links to them here on my blog.

Prayers to all. 

Surgery vs. Y-90 Sir Spheres

I need to update you on what Dr. B. the liver surgeon, told me!  I met with him last month.  He felt that the left lobe of my liver was enough to "support" me--keep my alive while my liver regenerates.  I do have 3 tumors in the left lobe but he could do radio frequency ablation (RFA) on them.  It is a small probe that uses heat to "cook" the tumor(s).  Whew, sounds like a MAJOR surgery and I know it has risks... my biggest problem is that my insurance won't pay him, not even out-of-network.

I did have my blood work done and a CT Scan last week.  Blood work is good.  My liver function is still 100%.  My Chromogranin A (CgA) went down from 249 to 111.  CgA is a tumor marker and can go up with tumor growth.  We also did a Pancreastatin blood test, which is an even better tumor marker for the liver but it hasn't come back yet.

Even though my CgA went down, my CT Scan showed a small increase in all the tumors in my liver.  Not a lot, a few millimeters.  I'm concerned that I had any growth at all since this is supposed to be a slow-growing cancer and its only been four months!  I was a bit surprised and I am worried that this cancer is going to be more aggressive than thought.

I met with my oncologist this past Tuesday.  I was pretty nervous since I had no idea how he would feel about me having gone to see Dr. Belnap!  I shouldn't have been...  he was very positive about it and seemed pleased that Dr. B thought I was a good candidate for surgery.  He knows, however, that my insurance won't pay for him to do the surgery.  He said we had a few options.  He can send me for a consultation with another liver surgeon in-network and then if they don't want to operate, I can appeal my insurance's denial and I can fight them to get Dr. B approved to do it.  There is a chance they may just want me to go to someone else, out-of-state, like Dr. Pommier in Portland who is a Carcinoid Specialist.  I would love to go see him but don't really want to have surgery out-of-state.  I know a lot of us "noids" have too though so I would do it if it came down to it.  My other option, and the one I am leaning towards, is to do the sir-spheres first, then surgery later.  Sir-spheres are radioactive beads that they insert directly into your liver tumors through an artery in your groin.  It's sort of like angioplasty.  They usually do it in three steps.  First, they map you.  They insert the wire and a dye which shows them how your liver is wired!  Just to make sure they can get to the tumors and that you don't have any physiology that would prevent the procedure.  The second step is actually inserting the radioacive beads to 1/2 of your liver.  Then you wait--I'm not sure how long but it's weeks. Third, they go in and do the other half.  I know of several fellow patients who have had this done.  Some have tumor shrinkage and even tumor necrosis (death).  It can also just stabilize them from growing.

The plan:  I am going to wait until after my next scan to do anything.  We decided to see what my tumors do over the next four months.  I'm not 100% sure this is the best plan.  Part of me wants to be more aggressive right now and the other part says, wait a little while longer and see if the Sandostatin stops the tumors from growing.  Plus, if I wait, I'll be closer to July 1st when I can change my insurance to another carrier who would be more likely to allow Dr. B to operate (if that's what I want).  There is, of course, no guarantee that a new insurance company will approve anything!

I do feel better knowing we have a "plan".  My Oncologist seemed very positive and was impressed with how much I knew.  We talked about specialists and clinical trials, PRRT, Ga-68 scan, other treatments, etc. He was like, "wow" you know so much!  It is definitely true that you have to be your own "advocate" with this cancer.  So many, many doctors don't know anything about Carcinoid.  I think the word is spreading and we have to keep on getting it out there!  I still feel very lucky that all my doctors have known about Carcinoid and how to treat it.  From the Gastroenterologist who did my colonoscopy, my surgeon and my Oncologist, they all know a lot about it.

I will try to post more often.  I always have a brain-cramp when I try to remember how to get to the right account!  Stay well, be happy and live life to the fullest!