Goodbye 2012, Hello 2013!

Out with the old, in with the new...  Happy New Year (almost).

This year brought the biggest change to my life. Mainly finding out that I have the big "C", cancer!  My motto has been and will continue to be "It could be worse"...  why?  Neuroendocrine cancer is usually a slow-growing cancer.  I say usually because there are times when it is not slow growing.  It could be worse if my cancer was almost any other type and had already spread to my liver (as has mine).  I may have had this for 5+ years.  I know it has not been more than 12 years due to the CT Scan I had back in 2000, which said my liver was fine.  It could have been in my appendix or small intestines at that time but too small to see--I am  not sure if my primary was my appendix or small intestines. Another thing I need to ask my doc--not that it really matters.  I just want to know.

There are tests that can be done on the primary tumor to determine what, if any, chemo it will/will not respond to.  I wish I had known this at the time of my surgery and I would have asked them to send my tumor to Dr. Woltering's group at Ochner Medical in Kenner, LA.  I think there is still a chance that I could.  I am going to ask my oncologist if this is possible.  I think it depends on how much of the tumor is available and viable for testing.  Dr. Woltering doesn't even charge for this service.  He is an amazing man and doctor.

My wish for 2013.... this is difficult.  I wish for good health, answers and treatment.  Perhaps I should say answers, treatment, good health!  Answers to my questions.  Treatment for my liver mets, and then good health!  I did take a step forward.  I called the surgeon's office that I was told about.  His name is Dr. Kim.  He is a general surgeon but specializes in liver surgery and is on my insurance.  I mentioned him in an earlier post (I think). He has co-authored a paper on cytoreduction surgery for both pancreatic and carcinoid patients.

I didn't know if I should call and see about making an appointment now or wait until after my next scan and appointment with my oncologist.  I decided to call to see if he was seeing adult patients as I saw that he is now affiliated with Primary Children's Hospital here in SLC, UT.  It was the only "hospital" that showed up on my insurance website.  I talked to a nurse and she told me that yes, he does still see adults but that his scheduler was out until after the new year.  She took my info and told me she would have them call me.  Now I need to decide if I should go ahead and see him or wait.  It depends on if he will want new scans before seeing me.  If he does, I may just wait.  It won't hurt (I don't think).  If he doesn't need new scans then I think I'll go see him and take copies of the two I've had.  I know I shouldn't worry about what my oncologist will think about me seeing him.  We did come up with a "plan" on my last visit in October.  I was going to wait until after my next scan and then decide.  I can't remember now why we were waiting.  I think it was partly because I said I didn't want to have any type of surgery until after the new year.  I don't know why I worry about what my onc thinks!  I'm sure he wouldn't care one way or the other.  I'm not questioning his plan or treatment.  I need to grow a backbone!  We think that doctors are "Gods" and know everything but they do not.  Mine has been more than open to anything I have asked or suggested so I'm sure he'll be cool with me taking matters into my own hands (once again).

I do not yet know what my Octreotide level is.  I just called the clinic to see if they had the results yet.  It's always "leave a message".  Last time she called me back pretty quickly but that was when I was having heart palpitations so I'm not sure when she'll call me back.  If they are even in today.  This way, if it is low, we can up my dosage of Sandostatin for my next shot on the 8th.  My oncologist did mention putting me on the pump as an option (if my levels are low).  I'm not sure I want to go that direction yet.  I need to do more research on it.

I did get my serotonin level checked again.  The OB-GYN that I saw ordered it.  It is still quite high at 919.  Normal levels are 100-243.  My level back in July was 1700+ so it is down but still too high.  I think this means my nasty little tumors in my liver are still pumping it out (serotonin), which could also mean I'm not at a high enough dosage of Sandostatin as it is suppose to bind to the receptors on the tumors and stop them from producing the hormones.  I wonder if this could also be why I continue to have heart palpitations.  The serotonin is also what can cause the heart valve damage so we really need to get this down!

My hope for 2013:  Find out if I'm a candidate for liver resection surgery or not.  Decide whether or not to do surgery if that is an option.  Sir-spheres would be my next best treatment option right now.  I think if I can
do something about my liver mets, I would feel better about my future... I still feel like I am in LIMBO.  Waiting and watching is just not a good fit for me.  I need to be pro-active and fight this disease.  I also have that looming option of switching insurance carriers come July 1st.  If my current carrier will not approve me having surgery or sir-spheres, then I can switch and try to get approved through a new carrier.  There are just no guarantees...

This post has gotten a bit long... I apologize if it seems scattered.  My thoughts are jumping all over the place today!  I will close for now with Many Blessings for a NEW YEAR and may 2013 be better for everyone!

Dr's Appointment and Results!

I met with Dr. Pieper. I loved her!  She was awesome.  She really took her time with me and wasn't rushed at all.  We just talked for probably 30 minutes or so before she examined me. I cried a little.  I haven't done that in front of a doctor!  Must be the woman thing.  She just asked me if I was depressed or stressed and I was like, um, yeah--I have CANCER!  Anyway, she was super nice and supportive.  We talked about my cancer and what was going on.  She was a little concerned with my bleeding issues.  it might just be the beginning of menopause but she didn't think so...

She did a biopsy of my uterine lining.. ouch! That hurt like a bitch (sorry).  I don't know how long that report will take.  She also ordered a bunch of blood work, which has come back (My Health online--love it).  The only thing that is now above normal is my creatinine, which is a kidney function indicator.  I see now that it has been steadily climbing.  I do not know what this means.  I guess I will find out if it's anything of concern when she calls me.  She also ordered the CA-125, which can be a indicator for Ovarian cancer, but it was in the normal range.  Another new test she ordered was a blood clotting factor test (a function of the liver).  It is also in the normal range so that is good.  It had me a little worried. However, I am still bleeding from the biopsy and I'm not sure that is normal.  It should probably not last this long (5 full days).

She also had me go have an ultrasound--it was supposed to be both vaginal and external but the technician didn't want to do the internal (trans-vaginal).  He said that I could just tell her it was because of the biopsy but I think he just didn't want to do it.  That is the feeling I got.  The written report was online yesterday, which said everything was "normal".  It didn't mention the ovarian cysts at all!  Perhaps it is gone but I wonder if that is why she wanted the trans-vaginal ultrasound.  Who knows.  Guess I'll find out when I hear from her--she's off this week so I'm sure it'll be next week sometime.  I really feel like the ultrasound was a waste.  It did show I had a nabothian cyst in my cervix but that's not where the CT scan said it was.  These are normal findings in women who have had children but since I haven't had any, who knows?   If the ovarian cysts is gone, that is GREAT!  I'm just not 100 % sure what to think.... said my left ovary was actually much smaller than the right one and the cyst was supposed to be bigger than the ovary measured. Strange.  It must just be gone.

Patient Conference

I've decided to go to the NorCal CarciNET Support Groups patient conference the end of January.  This is a 1 day conference sponsored by the Northern California Carcinoid Support Group.  I'm really, really excited.  3 top doctors will be giving presentations.  This is in San Francisco (a great place to visit).  My friend is taking me for my birthday, which is in December.  We were going to go to Las Vegas that weekend but when I asked him if he would go to San Francisco instead, he said "sure"...  The conference is on Sunday  so we'll fly in Friday night and spend Saturday doing all those fun touristy things!  Also, one fellow "noid" patient whom I've had contact with through email and FB, lives in San Francisco so she said she'd love to show us around!

Her is the link: http://norcalcarcinet.org/index.php/component/content/article/80-meetings/90-netcon13

I'm still debating on whether or not to call the surgeon I was told about.  He is on my insurance.  I just don't know if I should "stick to the plan" and wait until I meet with my oncologist again in Feb.  It's scheduled for Feb. 5th so I should be having another scan the end of Januray or 1st part of Feb.  I'll probably wait so I can talk to him about it more.  I read somewhere that liver cytoreduction surgery can stimulate tumor growth since your need to stimulate growth for the liver to regenerate.  Wow!  I hadn't seen that mentioned anywhere before and now I can't remember where I saw it.  I think it was in an article about the pro's and con's...  Just another factor to consider in the decision.  Of course, it still depends on what my insurance will approve.  Argh.

Another fellow Zebra is having major risky surgery today.  She was diagnosed in 2008 with mets to her liver.  Her primary tumor was never found.  Now she has lymph nodes in her chest, between heart and lungs, that have been invaded by tumors and have grown and attached themselves to her vena cava and pulminary artery (I believe).  She has gone through radiation to try and shrink these suckers but they've shown little response.  She is having trouble breathing so this surgery is pretty much her only option  to buy more time.  I am thinking and praying for her today and always.  She is such a sweet, funny and kind person.  Another fellow Zebra was told by her oncologist that this cancer was a "bland" cancer.  Try telling that to these patients whose tumors are invading their every organ!  I don't think 4 years is "slow-growing"....

I did have a blood test to see if I am on the right dose of Sandostatin.  It'll take two to three weeks to get back though.  My heart palpitations have not gone away with my latest injection so I doubt that the problem is too low a dose.  Going to the OB-GYN this Friday so I'll ask her to run a thyroid panel. Maybe I'll get some answers and find out what she thinks about my ovarian cyst that may not be a cyst!

I will try to post an update next week after my appointment and let you know what I find out, if anything.

Blessing to all...

Namaste

Results from Heart Monitor...finally!

I just got a call from my Oncologist!  I was surprised that he called me himself.  My palpitations are real (I was worried they would see nothing and think I was just crazy) but not dangerous!  Good news!  I was worried that if I start to have heart problems I would be unable to have cytoreduction of my liver tumors and/or the sir spheres... Whew.

We discussed possible causes, one of which is my thyroid.  I am hypo (underactive) but had it checked last March.  He suggested getting it checked again so I will ask the OBGYN on the 21st if she'll run it for me.  Also, I mentioned that this could be break-through carcinoid syndrome symptoms as I had these before my diagnosis and that they stopped after starting the Sandostatin LAR shots.  He thought it was possible so we're going to check my blood serum level of octreotide (Sandostatin).  I have to go in on Tuesday for my shot so we'll do a blood draw right before I get it.  Takes a couple of weeks to get results as these go to ISI (Interscience Institute) in California.  I should have asked him about sub-q shots for break-through symptoms but I felt I'd kept him on the phone long enough... We'll see if I need it when we get my levels back.  At least he's a willing doctor.  Not like some who have to fight for every test!  At least I know I'm not going to drop from a heart attack!

No News is Good News?

I have not heard back from my doctor about the results from my 24 hour heart monitor.  It's been almost a week and I've left two messages with them to get the results.  I'm not sure what that means.. perhaps they can't find the results!

I'm feeling about the same.  Still having heart palpitations and have had some tightness in my chest,which feels like my asthma acting up but I've used my inhaler and have had no change in symptoms.

I'll post when I hear something....

One step closer--The nurse called me and asked me where I dropped off the monitor?  At first I thought, Oh no!  They lost it...  nope.  She just wasn't sure if I mailed it in or dropped it off.  Um, really?  Anyway, she said she would find the report and call me back.  This was about two hours ago.  I love waiting for results.  I know, I know......