Mable is still my friend!

I saw my oncologist last week.  No changes in my liver tumors!  Still friends with miss Mable.  I had two interesting things on my scan though. The First was a sub-acute right rib fracture of the eight rib. Now I know where that pain was coming from!  I know when I did it too but not why it fractured.  I bent over to move bucket of water and something "popped" in my ribs.  It hurt like hell and still does. I thought that perhaps I popped a muscle.  My oncologist didn't even mention it.  I saw it when I asked to read the report.  Then I asked him.  It was the very first comment.  I think he only reads the conclusion at the end...  When I did say something, then he asked me if I fell.  I was like "no".  He said it didn't have bearing on my cancer so???

The other interesting (funny) thing of note was a "new globular soft tissue density in the left buttock subcutaneous tissues.  Hahaha.  It could be a Sando shot that didn't go deep enough into the muscle (what a waste of money).  If it get bigger (it's 1.6 cm) then we will know if it is or not.  I did mention my heart palpitations.  He said nothing about the EKG I had.  He seemed clueless unconcerned about that even though carcinoid can cause them.  It really makes me miss my old oncologist.  I'm debating on whether or not to switch centers so I can go back to him.

Not my ribs!  8th rib is the one I fractured!

The next day I had an appointment with my GP (she's an internist) for a prescription refill (I hate having to go into the doctor just to get a refill but some meds require a yearly visit I guess).  I told her about the heart palps, the rib fracture and she was concerned. She was going to pull up my old Holter monitor results and echo cardiogram from 2012.  She wanted me to do the Holter monitor but when I told her I had and how big a pain it was she said she'd "see".  She also said fracturing my rib that way is NOT normal.  Wants me to have a DEXA scan to check my bone density.  I'm getting that on Wednesday.  Hope my bones are ok.

Oh, forgot.  When I got my Sandostatin shot, the needle clogged.  Not once, but twice!  She has to stick me 3 times!!!  I've never, ever had a needle clog.

All-in-all, good news.  Me and Mable will hang out for as long as we can!

4 Years...

I just passed my four year cancer diagnosis.  It kind of just went by without much thought until now.  It's hard to believe its been four years.  I'm feeling pretty good.  I have more pain from my neck than anything.  It is probably time for another injection.  I have been having some rib-area pain that is pretty steady.  It isn't super sharp but it's not a dull pain either.  It's hard to know if this is from the liver surgery or something else.  I was told that some people have pain forever after that type of surgery.  It does come and go and is definitely worse when I sit for long periods of time.

My first surgery was July 2nd, 2012.  Right-hemicolectomy via laporoscopic surgery.  My recovery went well and I was in the hospital for 4-5 days.  I can't remember.  My second surgery was the following February and was a liver resection.  They removed about ten tumors (which left me with about ten small ones).  My remaining rumors have remained fairly stable since.

Next up:  scan on July 20th and i meet with my Oncologist the following week to get results.  He didn't order any blood work but they'll do the basics before i see him.

I will let you know how that goes!

hy·po·chon·dri·ac

I've said it before and I'll say it again; cancer makes you feel like a hypochondriac!

hy·po·chon·dri·ac

ˌhīpəˈkändrēˌak/

noun

1. 1.

   a person who is abnormally anxious about their health.

   synonyms:

   valetudinarian, neurotic "a hypochondriac who depends on her pills" valetudinarian, hypochondriacal, malingering, health-obsessed; neurotic, paranoid, phobic "her hypochondriac husband" I do feel like one sometimes. Every new pain, ache, leg cramp, swollen lymph node... The lymph node I've been "watching" for about 6 weeks. I could "feel" it and it has suddenly gotten bigger. It's not huge by any means. It's about an inch or so below my armpit on the underneath part of my arm. I can see it when I raise my arm up. Weird. I'm watching it to see if it goes away. I know it can be many things. I don't feel any other lymph nodes that are enlarged either.  If it doesn't go away by my next apt. for my Sando shot, I'll ask the nurse if/when I should be concerned.  My shot is in about ten days. Hopefully, it will go away.

As Promised...Results!

I met with my new oncologist last week.  He was very nice.  Much more boisterous than my last oncologist!  Not the quite dude he was.  I really liked him though.  One thing that impressed me was that he had definitely read my medical history!  Know that this file is about 3" thick!  I'm sure he just scanned it and read the important parts but still...  He knew my blood tests had been normal since my liver surgery.  He knew when my surgery was, etc., etc.

My scan was good!  Stable disease noted with no new growth!  I will say that this was the briefest scan report I have ever read.  I was somewhat disappointed.  It makes me wonder if the radiologist was having a busy day or what!

We discussed my pancreastatin, which jumped 90 points.  He felt that it wasn't anything to be too concerned about but we are going to test again in 3 months.  I usually go 6.  I think I mentioned that my CgA dropped 2 points and is now a 2!  He said it doesn't get any better than that.

My next visit with him will be in May.  I'm going to Kauai the end of February and will miss my shot -- I'll have it a week late.  I'm not too worried about that as I don't seem to have any syndrome symptoms and rarely have issues the week before my shot.  Occasional diarrhea but I can't say that it's because my shot is due.

I'm super excited to go to Kauai.  I haven't really been on a vacation for 3 years!  I've paid my airfare and my share of the condo.  We are staying in a penthouse condo right on the beach with floor to ceiling windows and a panoramic view!  I hope we get to see some whales.  It's the end of the season for whales but I'm keeping my fingers crossed!  I'll be sure to take lots of pictures!

This month also marks 3 years since liver surgery!  I can't believe it's been that long.  Still multiple tumors but they don't seem to be growing.  Of course, I could have had those results without the surgery but with the amount and size of tumors. I doubt it.

Here's to another 3 years!

New LungNoid Support Community and an update!

First, I am not a lungnoid.  I do know of many NET patients who are.  A lungnoid is someone whose primary tumor originated in their lung or bronchial system.  We just recently lost our first support group member, she was a a-typical lungnoid.  It was sad.  One of the nicest ladies....

I received an email from the Neuroendocrine Cancer Awareness Network about their new Lung Neuroendocrine Tumor Support Community.  This community is part of Inspire, which also has a PNET (pancreatic) support community.

LungNET.inspire.com

I'm having trouble with their website today so I hope the link works.

My Christmas and New Years were pretty uneventful.  I did catch a cold and it really took me down for a bit.  I'm just now feeling better although my ribs are killing me from coughing so much!

I' had a cervical epidural injection of steroids in my neck almost two weeks ago.  It was one of the easiest procedures that I've had.  I hope it helps.  My neck is worse off than I thought was.  An MRI showed major stenosis, bone spurs, arthritis, flattening of the spinal cord and a herniated disk.  Argh. It feels better now but I'm also taking Celebrex.

I have a triple phase CT scan on Friday.  Then meet with my new Oncologist next Tuesday for the results.  I did get the results from my CgA and Pancreastatin blood tests.  My CgA dropped another point to a 2 (normal is 0-5), which is great but my pancreastatin went up 90 points!  Its above normal. I don't know why the CgA went down and pancreastatin we up but they do say the pancreastatin is much more sensitive (better) a test.  I know that it's the "trend" that matters.  Not one blood test result.

I'll update after my appointment next week!

Resources...

I was recently contact by Novartis to see if I was interested in communicating more with them on being a patient advocate and identifying what (we) patients need.  I will keep you updated as to what happens with this new exciting opportunity!

I received an email from them last week with some resources they (Novartis) has developed to help educate patients about NET. I wanted to share this with you.

The first is NET Alliance

The second is Carcinoid.com, it even has a "symptom assessor", which I think is fabulous!

Check out these two great resources for NET cancer patients and their caregivers.

A quick update on me:  I'm still doing well, however, the last few weeks I've been very nauseated.  It comes and goes but has been a companion of sorts everyday.  I have no idea whats up.  I do have an appointment with my GP this week so I'll ask her about it.  Other than than that, I'm really well.

Take care.

Melissa Mathison, Creator of E.T., dies of Neuroendocrine Cancer!

I just received an email that the writer of E.T., Melissa Mathison, died of NET cancer.  The article doesn't say much about her diagnosis so it was a little disappointing to me.  She had an incredible career, which included an Oscar nomination for E.T.  She also wrote The Black Stallion, one of my favorite movies!

If you are interested, here is a link to the article.

Melissa Mathison dies at 65