HELP all you bloggers...

I am trying to figure out how to add other links to my blog.  I am terrible at researching. I would rather have someone tell me or show me how to do it!  I have been reading several good blogs and would like to add them here.  If you know how, please contact me at my email address: jeter4me@hotmail.com

I am going to go google it but if you know...

This is a random picture of me and my friend Cindy (the blond).  Just for fun.

SFO Patient Conference

SFO--Pier 39!A couple of updates...  I attended the NORCAL's (Northern California Support Group)  one day patient conference in San Francisco.  It was a one-day conference so I thought it would be a great excuse to go to San Fran!  No, really, I wanted to go to the conference and meet some other real "noids" and hear some of the to docs talk.  Dr. Liu from Nashville (Vanderbilt) was there as well as Dr. Wolin from Los Angeles (I think Cedars-Sinai). It was a packed conference with over 100 people attending.  I flew in with a friend of mine on Friday night so we had all day Saturday to play!  It was a blustery windy and cold day at the wharf but it was nice to see green grass and the sun!  We hadn't seen much of the sun here in Utah for about a month.

I did learn a couple of new things at the conference.  A bit about radiation and how much our bodies can take.  This pertains to both PRRT and SIRT (sir-spheres, thehttp://www.prrtinfo.org/ra-spheres).  You can only do so much so it might not be the best to do it early in your treatment but of course it depends on the severity of your disease. It made wonder if I should wait on the sir-spheres (I have more news on that later).

I haven't talked much about PRRT or PRRNT yet.  It stands for Peptide Receptor RadionuclideTherapy.  It is basically using a radioactive peptide that binds with the receptors on the tumors to deliver a dose of radiation.  That is a very simple description.  This is a great website about it: http://www.prrtinfo.org/.  Unfortunately, it is not FDA approved in the USA and only one place here does it.  Excel Diagnostics in Houston, TX.  Insurance generally will not pay the $60-$70K cost of roughly 3 treatments.  The best places to get treatment are in Europe, where they have been using it (and where it was developed) for around 14 years.  The cost is much less as well.  About $12K per treatment.  Again, insurance does not generally pay although there are a few patients who have gotten reimbursement for some of the costs.  It is mainly a systemic treatment but they are starting to use it as a liver only directed therapy as well.

I did not realize that you can only do so many radiation-type treatments.  Your body can only take so much. I think it was Dr. Liu who said that with sir-spheres, only one or two times and that's it.  The liver "remembers" and can become too toxic.  Same with PRRT.  About 4 treatments although they are starting to do lower dose with a then greater number of treatments.

I got to meet one of the lovely ladies I am in contact with through FaceBook.  A few others as well.  It is so nice to be able to meet in person!  I wish we had had more time to chat after the conference.  We left right after to get back to the hotel and grab our luggage then head to the airport.  After checking in and getting to the gate, we found out our flight was cancelled due to the airport being closed in SLC because of SNOW!  Long story but we did make it home.  I got in the house at 2:30am.  What an adventure!

On another note,  I talked to Dr. Kim again. He is the liver surgeon that I met with a couple of weeks ago.  After this conversation, I am feeling much more positive about the possibility of surgery.  He said that he felt he could get 90% of my tumors out!  That is really good news.  I am now excited to go see my Oncologist on the 5th.  I will let you know how that goes!  Also, I got my octreotide level back.  It is 2,176. Normal range is 2,500 give or take 1,500 (a big range-I think).  My Pancreastatin is 333 with a normal high end of 135 so still a bit high but lower than it was.  I don't know my CgA yet but all my other blood work looked pretty good.

I hope you are all well.

Cheers!

Surgeon Called!

Dr. Kim called me yesterday!  That was fast...  basically, he didn't say yes and he didn't say no.  He said more or less that it's up to me.  Hu?

Let me explain...  he said he could remove my right lobe, where my biggest tumors are located but that he would be leaving about 10 tumors behind.  That seems like a lot to me.  I forgot to ask him if he could do anything about those remaining tumors--like RFA (radio frequency ablation) or cyro-surgery (freeze them), etc.  I did call back but have not received a return call yet.

We discussed my scan a bit.  He said the good news is that I appear to be stable, which is great!  I told him that I would wait to talk this all over with my oncologist on the 5th but would he have access to the new scan, etc. and he said he would also be calling my onc.  So, I feel rather sad, actually.  I would have rather heard YES we can or NO we can't.  Not--uh, it's up to you.

He also said he thought he Y90 would be a good option for me.  This would be the sir-spheres (little radio-active beads).  I did get emailed to me by another patient, a paper on the possible side-effects of this procedure.  I guess the beads can get out of your liver and cause problems in the stomach called gastroduodenal ulcers.  They are really painful and don't respond well to standard ulcer type treatment (PPI's, acid reducers).  Usually, surgery will provide relief.  The beads never ever go away.  I did not know that.  I thought they dissolved but they don't. They can also just get stuck in tissue and cause pain.  The incidence seems very low -- between 2.9% and 4.8%.  That's pretty low odds.

I emailed the fellow patient who got me Dr. Kim's name and told her what he said.  She is going to talk to her contact (a doctor/surgeon) and see who here, if anyone, she would recommend for the sir-spheres.

I've also been looking at clinical trials.  I'm just not sure if I should go there yet.  I will bring that up at my appointment in February with my Oncologist.

Cheers!

Scan Results but....

I haven't talked to the surgeon yet or heard from him.  My "source" got me the report.  Basically everything looks good!  Stable.  Only growth in one liver tumor and it is only a few millimeter's.  I was hoping this report would be more detailed than my other two and give me an exact number of tumors.  This one only says "more than 10" lesions and my other two say "more than 20".... which is a HUGE difference to me.  I will have to ask the surgeon about the number....

I hope to hear something from them this week but may not.  He said he would be presenting my case to the tumor board but I don't know if that will be before he talks to me again or after.

I also got my blood drawn today for my tumor markers... won't know those results probably until I see Dr. W, my oncologist on the 5th of Feb..

I miss my FJ!

Wow!  What a drive... we got major snow last night and today.  I had an FJ two years ago and I really, really missed her today!  Nothing like a true 4-Wheel Drive!

I debated all morning whether or not to postpone my appointment with the surgeon.  I even called his scheduler to check on both the weather/road conditions and if they wanted me to go have a scan before I saw the doctor.  She said that yes, the roads were bad and many people had cancelled but no, I didn't need the scan before seeing the doc since they had all my records and previous scans.  I should have waited anyway.

He looks very young.  I almost asked him if he was old enough to drink.  That's how young he looks.  He is probably a child progeny.  Not quite Doogie Howser but close!

He told me absolutely nothing that I didn't know already.  He needs a good scan to make any decisions and he didn't like either of mine--quality wise!  I wish they would have just told me to go get the scan first and then come see him.   They set my scan (tri-phasic CT) for Monday morning.  The good part is I picked up the contrast while I was there so I don't have to show up 90 minutes early to drink it!  I can drink it in the morning and while driving up there.  I do hope the snow stops and it isn't as horrific as the drive today.  Dr. Kim said that after getting my scan looked at he will present my "case" to the tumor board.  That's a good thing, right?

We did discuss the different types of resection surgery.  They don't call it "debulking" any more.  I don't know why. I don't think I care.  My gut feeling is that since my tumors are so spread-out throughout my liver, they may not want to do major resection but then I'm not a surgeon.  He did say that if they can get most of the tumors out it can extend my life expectancy by 10 years (add 10, not give me 10).  Something I already had read about and saw a video presentation where it was mentioned (Dr. Pommier).  We don't know how long I have (my opinion here, not the doctors--we haven't discussed this part).  Could be 5, 10, 15...  there just isn't anyway to know yet.  I could possibly do nothing and be fine for 10 years.  Crazy, hu?

Well, it is four minutes to five and I'm trying to get out of here so I will close for now.  Will post more when I know more!

Cheers!

Big sigh--frustration, etc.

I never heard back from the nurse regarding my Octreotide level results.  I really thought she would call me on Monday but she didn't.  I decided NOT to call and just wait and find out when I went in for my shot on Tuesday.  Well, when I got there, the medical assistant (or nurse--I'm not sure what they are) that checked me in said, I need to draw your blood.  I asked "what for"?  She said to get your octreotide test.  WHAT?  We did that last month....  She said that they did a CBC.  Oh my hell!  I was very clear about what test we were doing.  I'm not sure if the nurse or the doctor screwed up.  The funny thing was that this was the SAME girl.  I remained calm.  Took a deep breath and just said OK.  I'm not going to stress about it.  I wanted to throw a fit but it just isn't worth it.  NOT a big deal.  She did assure me that they would send it out to ISI that night.  Guess I'll find out in a couple more weeks.  I'm not going to call though.  If they don't call me, I'll just find out when I go in on the 5th.  I am see the doctor, so I can bitch to him about it!

Tomorrow is the BIG day.  Meeting with the surgeon.  I read his profile again.  He is the head of the liver transplant program at the University of Utah.  He has some pretty amazing credentials.  We are also supposed to get a HUGE snowstorm starting today and going through tomorrow.  It does make me nervous about the drive as it's up on the side of the mountain!  Ick.  Roads could be bad.  I'm going to plan on leaving an hour early since normal drive time would be 25-30 minutes anyway.

I'm not sure why I'm nervous.  I don't even know what I'm really hoping for.  Do I want another big surgery?  Is it worth the risks?  Is it even possible with the number of tumors that I have and their locations?  I think I just want to know one way or the other.  Then I can move on with other treatment options.

I will post tomorrow after my appointment.

Take care.

Did it!

I called Dr. Kim's office (the surgeon to see if I'm a candidate for liver resection) and have an appointment on Friday, January 11th.  This is at Huntsman Cancer Institute.  I haven't been up there since my mom had her chemotherapy there about 13 years ago.  They now have the Huntsman Cancer Hospital adjacent to the Institute.  It is a very beautiful center.  I'm excited to see how much it has changed and a little nervous to find my way around up there!  I can only see Dr. Kim at Huntsman and have my insurance pay.  I am sure that means that surgery would be at the Huntsman Hosptial which is fine, it is very, very nice.  I also know a nurse who works up there although not on the surgical floor.  Not sure what Dr. W, my oncologist will say about me getting this appointment on my own.  I doubt he will care.  I know they have to request my records from him for my appointment so he will know about it.  I hope he doesn't think I'm jumping ship and taking my "business" to Huntsman.  I would if there was a "specialist" in carcinoid cancer up there but I think Dr. W. see's the most of us "noids".  However, in looking at their website, I should get a 2nd opinion up there (I say "up" because they are up the hill from us down in the valley)!  They may have more going for them than I think.  I will ask Dr. Kim what he thinks about the whole thing.  Now, who do I take with me?  Sue, my sister, works up there and has said she wants to come but she's back-out of my last two appointments with my oncologist.  My friend, Marc, wants to go but I'm just not sure I want him to.  I am not sure why.  It just gives me "pause" to have him hear all the possibilities and details of my cancer.

I did get a call Friday night from the head nurse at my cancer clinic regarding my octreotide serum level test.  She actually wasn't sure which test result I was looking for.  I had to explain it to her and also where it had been sent out to.  She said she'd have to go get my chart and call me back (and probably make a phone call).  Then my cell phone dropped the call and she didn't call me back. I didn't bother calling her since  I only have the clinic number and no one would have picked up.  It was after 6!  She was sweet to call me so late on a Friday.  I haven't called today.  I am just a little bit frustrated about the entire thing.  If my levels are low, we need to increase my dose of Sandostatin and I go in tomorrow for my regular shot!  I hope she calls me later today but I'm not counting on it.

If I don't hear from her today, guess I will find out what I can tomorrow.  I also want to try the beta blockers for my heart palps because they are getting worse--or bothering me more.  I'm not sure which one!