Thursday, August 9, 2012

A quick update... I'm very happy to say that I've had no bad side effects from the Sandostatin LAR shot!  My oncologist warned me that some people do and that they can be quite bad... I did have a headache for about 3 days but it went away.  My symptoms have also abated.. diarrhea and heart palpitations!  So it is working as intended.  Now just hoping it stops my tumors from growing or spreading and with time, might evens shrink them!  Next shot is scheduled for the 20th...

Friday, August 3, 2012

Cost of Treatment!

Wow.  I called my insurance company to see how much the monthly injection of Sandostatin LAR was.  I about fell off my chair!  My oncologist told me it was $10,000 per month.  They charged $17,000!  This is per month, every month for the rest of my life (or for how ever long it works).  CRAZY... also, thank god for insurance and no "lifetime maximum"....

Thursday, August 2, 2012

To date...

My diagnosis....

I thought I'd start a "blog" to let my friends and family know about my newly diagnosed cancer!  I'm not much of a writer so I ask for your forgiveness in advance.

I had my first screening colonoscopy on June 14th.  I didn't expect it to be more than routine.  When I woke up, I was in a great deal of pain and very nauseated.  That passed with some medication and I got dressed.  When the doctor came in, he sat down and told me they had found a large tumor in my small intestine, which was too big for him to remove.  He said he'd biopsied it but didn't think it looked like "cancer".  I should have asked him "why not" but I didn't.  He then told me he wanted me to go have a CAT Scan and some blood work, which they scheduled for the very next day.  

The CAT Scan went fine.  I did have to drink contrast so that was fun after drinking the horrible prep for the colonoscopy the two days before!  Ick... If you've never had a CAT Scan with contrast, they also give you an injection just before they start which makes you "flush" and it feels like you pee your pants!  Luckily, I had one years ago and was ready for it!  It's a very strange feeling.

Monday the doctor called me back and said "I'm so sorry but you do have cancer and it's spread to your liver".  Well, to say the least, I was devastated.  Those of you who know me, know that my mom, Norma, died from liver cancer very quickly (we're sure it was from her colon cancer but they could never biopsy it).  He told me it was Carcinoid, which is rare but not much else.  I did the Internet search that afternoon and read a lot.  Yes it's rare and it's slow growing (usually).  These tumors produce hormones, mainly serotonin, which can wreck havoc with your other organs, including your heart.   I did have an echo cardiogram and my heart is just fine :)...  the hormones produced by these tumors can cause what is known as "carcinoid syndrome".  I had only been having one of the symptoms, diarrhea, which is probably why I hadn't gone to the doctor earlier-- I thought it was from not having a gallbladder--and we're still not sure.  

They had already set up an appointment for me with a surgeon the day I had the colonoscopy.  It was scheduled for Tuesday, June 19th.  Things were moving very quickly.  I'm not sure if it was the fact that I'd told them my insurance was changing on July 1st or the fact that I had CANCER!  Either way, I was glad.  

To make a long story short, I had surgery on July 2nd (yes, after fight with new insurance company for approval but that is another blog).  Surgery went very well.  They removed part of my colon, cecum, ilium (small intestines) and appendix.  They would have removed my gallbladder as well since the treatment causes gallstones but I had mine removed years ago.  I actually had 11 tumors in all.  10 in the small intestines ( I think they were all grown together) and one in my appendix. 11 of 13 lymph nodes were also positive for cancer. They also biopsied some in my liver.  All came back as expected, which is technically now called well-differentiated neuroendocrine carcinoma.  That's a mouth full so I'm sticking to Carcinoid!  Same thing...

Treatment..... I'm seeing a great oncologist at Utah Cancer Specialists, Dr. Jonathan Whizenant.  While not a Carcinoid Specialist, (there isn't one in Utah) he is very knowledgeable about it and treats most of the "Noids" here.  This cancer doesn't really respond to general  chemo since it is slow-growing and most chemo targets (kills) fast-growing cells so at least I don't have that to look forward to!  The treatment right now is a monthly long acting shot called Sandostatin...  It last 28 days and blocks the tumors from producing those pesky hormones that I mentioned earlier.  It also has been shown to slow and even stop tumor growth in some patients.  I had my first shot on July 23rd.  I haven't had many side effects.  Some people have worsening diarrhea, abdominal pain, nausea, etc.  I had a very sore butt and leg that night but it was fine the next day.  I did have a headache for a couple of days but it's gone now.  I'm hoping I don't get anything worse.  My doctor said it can be immediate or take a couple of weeks.  

My next shot is scheduled for August 20th.  The hardest part right now is waiting.  We will re-scan and do the blood work in October or November.  Doc said November but I'm not sure I want to wait that long!  I know a month probably won't make a difference but the waiting right now is the hardest thing ever!  

Next steps...  some people do great on Sandostatin for years.  they have no tumor progression or spread of disease.  If things progress, there are other treatment options available.  Right now, I'm hoping the shots work and this will be more like managing a auto-immune type disease--almost like diabetes.  There are also new advancements in treatments being made all the time.  There are some great clinical trials going on now in Europe.  Who knows what the next few years might bring!  My goal is to stay positive, take good care of myself and try not to worry too much!  

If you would like to read more about this type of cancer go to www.carcinoid.org