Surgery is likely

My appointment yesterday went very well.  I really like my Oncologist.  He was very impressed with Dr. Kim, the liver surgeon.  After much discussion and weighing the pros and cons I am going to go ahead with the surgery (pending approval from my insurance company of course).  My oncologist even said that if it were him, he would do it.  He also said there is no big rush.  I don't have to have it next week but should probably not wait too long.  I'm thinking mid to late March at the earliest.  I could wait but I don't want to because I know I will just get more and more anxious about it.  He said it is a HUGE surgery and will take me probably 3 months to get feeling more "normal".  He said it only takes about 2-3 weeks for the liver to regenerate but your body just sucks all your energy and calories to fueling that process and the "affects" can last for up to 3 months.  He said since I am young (fairly) and healthy (other than having CANCER), I should not have any complications but of course, there are no guarantees!

I found this picture of a liver.  I will be having my right lobe removed, which is where my biggest tumors are.

It's a little daunting to look at how big the right lobe is compared with the left.  I'm a little nervous and of course, hope I am making the right decision.  Also, this is not a cure. It is a way to hopefully get 5 to 10 more years added on to my life.

Great Expectations!

Tomorrow is my appointment with my Oncologist. I haven't seen him in four months.  It sounds like a long time for a cancer patient to go without seeing their doc but I guess with a slow-growing cancer, it is not unusual.  I do have to pay $50 every time I see him so it's probably a good thing it's not every month but to be honest, sometimes I wish it were a little more often.

I am hoping that I don't have too high of "expectations" for this appointment.  At my last appointment, I had just met with the liver surgeon who is not on my insurance plan and he (Oncologist) was very positive about the fact that the liver surgeon thought I was a good candidate for liver resection.  We agreed that at this coming appointment (tomorrow) he (oncologist) would set me up with the liver surgeon at my hospital   His feeling was that they (my hospital or this surgeon) would probably not want to do liver surgery on me and then we could send me out-of-state to a specialist or get approved for this other liver surgeon to do it who is not on my plan (of course he did not know about Dr. Kim or did not think about him).  Of course, I have since gone to see Dr. Kim at Huntsman who is on my plan and he said he could do it.  I hope my oncologist is a-ok with me jumping the gun and going to see Dr. Kim on my own.  I can't imagine why he'd care and I know that I shouldn't care if he is mad or annoyed but I do want my doctor to respect me.  I am nervous.  I am nervous that he will say it is a bad idea.  I am nervous that he will think it's a great idea.  Surgery is scary.  Liver surgery is very scary.  My last surgery, I really had no choice.  It was "you need surgery". This time it is more my choice.  I can choose to NOT do it or I can choose to DO it.  Of course, I am also nervous that my insurance will say NO--mainly because of what I say above (my choice).  I know what the specialists say... cut it out, cut it out, cut it out.  

I will post tomorrow night or Wednesday after my appointment.  I hope my sister shows up this time.  I could really use the support.

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!