Tuesday, June 19, 2012

Getting Ready for Basel, Switzerland

I received my invitation to Basel, Switzerland. The date for the first of three PRRT treatments is July 23, 2012.  We have booked our hotel in Basel ... it's Hotel Rochet ($1200.00 to $1300.00us) and it's located very close to the University Hospital.

The plan is to arrive on the 20th of July and get settled in from travel, relax a little, and be at the hospital Monday morning around 9am.  Bridget Avis is the nurse that handles all Carcinoid patients and she said I would be out by Wednesday noon.  She also said we should plan to stay in Switzerland for a couple of days after the PRRT treatment as I would be too tired to travel.

We haven't booked our flight yet, but should get this done in the next couple of days most likely 7/19 to 7/26 or 27th.  So far the round trip flight costs for Connie and I are around $2600.00us.

The first PRRT treatment to be paid in advance is approximately $10,000.00US

The second and third PRRT treatments will be scheduled 9 to 10 weeks apart.  The airline tickets and hotels costs will be the same as the first trip, but the treatments will be a little less about $7000.00us each.

We have had the opportunity to visit with several folks that have gone through this ordeal and I want to  thank them for their input and advice .. it has been a comfort to know what to expect.

If you haven't been there/done that you can't have any idea of what to look forward to.

My kids are working hard on the fundraiser for August 16th at Bootleggers, Lake of the Ozarks.  I think they will be posting more information about that as the event gets closer.  Everyone has been so supportive ... Connie and I truly appreciate it.

Friday, June 15, 2012

Bone Marrow Test Results

My last post was getting the bone marrow biopsy and bone core sample ... the last test to be sure I was approved for the treatment in Basel, Switzerland.  GOOD NEWS! The test came back good, no cancer cells in the marrow and core test good also.  As I said the test was painful but very short, so well worth it to be sure

Now the journey begins ... planning for the treatment in Basel, Switzerland ... and figuring out how we're going to pay for it.

Friday, June 8, 2012

Ouch! That hurt

On Friday, June 8th, I went back to my Oncologist, Dr. Shelby Rifkin in Jefferson City, for what should be the last test to qualify me for the PRRT treatment in Switzerland.  This is the bone marrow biopsy and bone core sample to make sure the tumors have not invaded the marrow.  The results should be available today or by Tuesday 6/12/12.

I've mentioned the neumorous tests and exams including the Liver biopsy I've already, had but the bone marrow biopsy was an attention getter!  Thank goodness it didn't take very long because it was painful to say the least. When the results are in I'll post again.

Thanks to all that attended the poker touney at Jeremy and Alana's and for the contributions to my medical fund.  Without everyone's kindness and support this would be a terrifying experience.

Tuesday, June 5, 2012

Fund Raiser Poker Tournament - $1475 Raised - Thank you!

All of our children have been working on ways to help raise funds for my treatment/medical costs.  Connie and I have been blessed with 6 caring children. 

Saturday 6/2/2012, my son Jeremy had a poker tourney at his home and about 35 of his friends (many of which I have known from Jeremy's college years or before) came to help out. 

Jeremy as me to say a few words before the tournament started. Needless to say, I was a little choked up.

It was a great evening of visiting as well as the donations from all. 

I can't tell you how wonderful things like this make you feel.

My heart felt thanks to all who were there.

A total of $1,475 was raised during the evening.

My son, Jeremy, and his wife Alana sponsored the tournament.


Early in the tournament, we had 4 tables of not-so-serious poker players.
My oldest daughter, Sandy, won the tournament and of course donated her winnings back to the "pot" for medical treatments.

A big thank you to the entire group who came out.



Friday, June 1, 2012

My Galium 68 Scan - Carinoid Tumors Found!

I'm back from the University Hospital in Iowa City, Iowa for the Galium 68 Scan.  All went well as my doctor thought it would. The site of origin for the Tumor has been located in my mid gut.  Dr. O'Dorisio says they are very small and may be operable after the PRRT treatment in Switzerland provided the treatment shrinks the Tumors and the liver burden as it should.

I have read many other Blogs from folks suffering from Carcinoid Tumors that have been unable to  be located as mine was. If you have dealt with this problem or know anyone that has, I recommend the Galium 68 scan.  This is the only way they were able to locate my tumors. The scan is painless and extremely definitive. Unfortunately, most insurance will not cover it yet and not all Cancer hospitals are equiped for the scan.  The cost is approximatly $4300.00 at this time.

I have one more test prior begining the treatment in Switzerland and it is a requirement.  This is a bone marrow sample to be sure the tumor has not moved to the bone marrow. Since the PRRT treatment follows the tumor, they do not want it to damage the marrow.  If all is OK there then the PRRT will finally be scheduled.

The worst thing so far has been the waiting game. It's been 6 months from the diagnosis to get to this point.