2nd PRRT in Switzerland

Connie and I are back from my 2nd treatment in Bazel, Switzerland.  Treatment was on October 3rd and was a little easier then the 1st one.  I think the anxiety was lessened as well because we knew what to expect and where to go and so on.  After the treatment and scans the Doctors said that the Tumors seemed to be stabilized to some degree, but my liver was still very large and burdened so for now I have blood work drawn every 2 weeks and the results sent to Basel.

 My third treatment is scheduled for 12/12/2012 and hopefully that will start to reduce the liver burden and lessen the Tumor growth so I will not need anymore treatments at least for some time.  The 2nd treatment cost breakdown:  Treatment:  $5200.cfs, Airline tickets $2200.cfs, Hotel:  $1100.cfs, Misc./food, etc.:  $500.cfs = Approx. $9000.cfs or $9,900US at this time. 

On a good note, the side effects of the 2nd treatment were less of a problem and I have been feeling a little better since we got back home. 

As far as the flight back and fourth goes I don't think anything can make that better unless Star Treks transporter is available. 

Once again Connie and I wish to thank everyone for their kindness and prayers, and support in anyway during this very difficult time in our lives. 

FYI:  Connie and I contacted Delta Airlines prior to our first overseas trip to look into the Delta Sky Miles program which would allow us to save $'s on the upcoming flights!  They advertise they are sky partners with KLM and Air France, not exactly correct.  After our first flights over and back we were scheduling for our second trip only to find the Sky Miles were only good on Delta flights and could not be used on the other transfers (Sky Partners)?  After a lenghtly discussion over the phone with Delta they agreed to discount our tickets for the 2nd trip by $550.US so be sure you ask as many questions upfront as possible!

One other thing to consider is to avoid the Paris airport for transfer flights if possible, RUDE & UNHELPFUL to the MAX.

Flushing Zebra Fund Raiser - Thank You

As you know by now the PRRT treatments are not covered by medical insurance even though I have Medicare and a good Supplemental Policy, so with that in mind our children have all pitched in to help us.

One of the greatest things was the Flushing Zebra Bash Fund Raiser. This turned out to be a fantastic event raising close to $40,000 with a turnout of over 400 people.  This group of  fantastic folks, friends, family, business peers, and friends of friends just show how great a place we live in.

Thanks to you all! 

Connie and I wish to say thank you from the bottom of our hearts to everyone that donated in any way to the fund raiser.  The money raised will go to pay the existing costs of the 1st treatment with enough left to cover most of the 2nd and 3rd treatments.

Without your sincere help we would not have been able to get into this treatment program.

To my family with love:

Connie
Sandy & Mike
Jeremy & Alana
Chris & Erin
Kari & Shawn
Shanon & Kelly
Kimberly

Always and Forever,

Dad 

Connie and I at the Flushing Zebra Bash ...

Back from first PRRT in Basel

The first treatment in Basel Switzerland went well, just as the doctors said it would.  I haven't blogged before now, because the side effects lasted longer than I thought they would. I have been weak and tired with a lot of enlargement to my liver. 

I spoke with Dr. O'Dorisio last week and he said the enlargement of the liver was to be expected because my liver was heavily burdened with tumors. He increased my Octritide injections to help control the Carcinoid Syndrome. 

The treatment itself was painless and only took about 15 minutes.  I  spent a total of 2.5 days in the hospital, rested at the hotel a couple of days and flew home.  (8 days total)  The cost of the first treatment with lodging, airfare, hospital, & misc.$14,400us. 

The worst part of the entire time was the flight over and back.  About 15 hours each way, 8 of it over the ocean with not much room to try to be comfortable. 

If you are planning this trip I suggest the following:

1. Pay for the upgraded seating on the long part of the flight (we went Delta)
2. If you are weak or short of breath ask for wheel chair assist all the way 
3. Try to plan enough time between plane changes as some of the air ports are large and getting from one flight to another can take longer than you think. 

Overall everything was good, the folks overseas were helpful when we needed it and most of the airport experience was good.  The University of Basel Hospital was excellent from beginning to end.

My next treatment is October 3rd so we'll be on our way again in a couple of weeks.

My grandson (Patrick Rath) and my son-in-law (Shawn Rath) seeing me off at the airport in Kansas City.

 

Pictures from Setup for "The Flushing Zebra Bash"

I'll be making a detailed post about the success of the "The Flushing Zebra Bash" in the next couple of days ... it was AMAZING! But wanted to share a few photos "pre-event" while were setting up the silent auction and decorating Bootleggers.  Photos and details from the event coming shortly.

Loading up the vehicles with "the goods".

Dad, Chris, and Brody

Silent Auction Tables Before the Event ... 100+ items!

Two Premium Liquor Baskets & Lottery Tree with 100 Lottery Tickets on It -- Raffle Drawing Prizes. PLUS setup for wine cork sale -- guests bought a wine cork and left with a bottle of wine -- we had 133 bottles of wine donated.

Decorations around Bottleggers

Quick lunch break -- Kim, Jeremy, Shawn, Alana, & Kari

The Flushing Zebra to greet everyone at the door.

Zebra balloons!

Good friends and neighbors, Cheryl & Troy

Sandy & Dad

Flushing Zebra Bash is Tomorrow!

We are frantically working to pull everything together for the Flushing Zebra Bash tomorrow -- it's going to be an incredible event! We'll have LOTS of activities going on throughout the evening, including:

50/50 Drawing
There's only ONE ticket left as of 8:30 AM today!  That means we are going to kick the event off by giving someone $5000!  Can't wait for that!!!

Wine Cork Sale
That's right, we're selling corks!  Buy a cork for $20 and you will leave with a bottle of wine.  We have over 120 bottles ... something for everyone's taste!

Raffle Drawing
Thursday is your lucky day! You can purchase one raffle ticket for $10 or three for $20.  This enters to win one of THREE prizes.  We have a lottery tree with 100 tickets attached to it and TWO huge liquor baskets!

SILENT & LIVE AUCTION
Over 100 incredible items ... everything from Spa Treatments, Rounds of Golf, Luxury Trips, and Sports Tickets.  You can view all the silent and live auction items in the EVENT PROGRAM.
You can also view them here:

Flushing Zebra Bash Silent Auction Items from MSW Interactive Designs LLC

See you at the Flushing Zebra Bash tomorrow!

(Just a few quick photos of the "Prep" for tomorrows event)

 

50/50 Drawing for the Larry Wardenburg Benefit

SOLD OUT!

The 50/50 drawing tickets are now available for anyone wanting to support the Larry Wardenburg Benefit (AKA "The Flushing Zebra Bash") on August 16th. 

Make a donation and you could win $5000!

Here's how it works:

1. Make a $100 donation to the benefit for the 50/50 drawing (you don't have to be local to Lake of the Ozarks ... you can be anywhere!)
2. You will receive a ticket entry into the drawing.  If you order online, we will mail you your ticket and also send you an email confirmation that we received the donation for the benefit.
3. Only 100 tickets will be available. If all 100 tickets are issued, the 50/50 pot will total $10,000.
4. The drawing will be held the night of the event, August 16th at Bootleggers.
5. You do not need to be present to win.
6. Winner will receive 50% of the total pot, and 50% will go to the benefit for Larry's Carcinoid treatment. Winner will receive up to $5000, assuming all tickets are issued. If all 100 tickets are not issued, the total pot will be split 50% to winner and 50% to benefit.

One more step to Basel

We have the hotel reservations booked in Basel, Switzerland and also our airline reservations booked from Kansas City, to Minnesota, to Amsterdam, to Basel approximately 15 hours travel time. 

The hotel cost for the stay is $1007US  for the 7 days we will be there.  The Delta air fare is $1348 per person round trip, total $2696.00US both of these rates vary somewhat depending on what dates you need to book.

On my last post I said the treatment was around $10,000US, the final # is $9613.00US.
 
FYI for anyone planning the Basel trip for treatment, I am very confident that it's one of the best ways to go and the over all costs are still lower than any Connie and I have found in the USA.  The planning and info gathering is a little more time consuming and somewhat of a task for anyone that hasn't traveled abroad so maybe this blog info will be of help.

The next thing we are looking into is cell phone service and power conversion for items from cell phones and notebooks to shavers and hair dryers/curlers, I'll keep you posted.

Once again, many thanks to all those that have been so supportive to Connie and I through this journey.

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.

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.

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.

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.

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.

A Spouse Perspective - Connie Wardenburg

How do I begin?   I certainly am not a writer, but will try and give you an idea as to who I believe my husband Larry is and what has happened over the past year.

Larry & Connie Wardenburg

We were married in February 1998.  This was a 3^rd marriage for both of us, but it seems like we have known each other forever and I not only truly love Larry, but he is my best friend.  Our family is the most important thing to us.   We have 6 of the best kids and their spouses ever and oh boy, don’t get me started on our 7 grandchildren.   

We opened our real estate company in 1989 at Lake of the Ozarks.  We began as a vacation property management company and then added the real estate sales.  Larry’s background was in Hotel management and I had been selling real estate since 1983.  Our company (Lifestyle Properties) grew to be one of the most successful companies at the lake.  We worked hard during those years, especially in the vacation rental portion.   In the beginning we would clean many of our condos and homes in the evening after the office was closed, sometimes working until late at night.   As our business grew, we hired on housekeepers, but many times would do some of the cleaning ourselves.  We loved what we were doing and especially doing it together.

We were lucky to get some great real estate agents join our team on the real estate side of the company.   Our company grew to be successful not only monetarily but was also well respected by our peers.    Life was great!   Then when the real estate market started dropping, we were sure it was only a short set back and we began using our retirement to keep the company open.   I never believed that the recession would take such a toll on the real estate market.   Eventually, we had used most of our retirement and reality set in that we were in financial difficulty.  

We sold our company to Al Elam Real Estate in June of 2010 for a small monetary amount and my entire office moved in with the Al Elam company.    This was a great relief to me as I no longer was the broker/owner and now could just concentrate on selling real estate.  We continue to pay off bills from our company and our credit is still good although our credit debt has gotten out of control.  Larry took on several different jobs, such as working at nuclear plants in Virginia on outages, working at Pauls grocery store and then working for his daughter, Sandy, with computer input and handy man chores 3 days a week.    Not what he expected to be doing in his retirement years.   

We are not quitters and are trying to do everything to keep afloat and not file bankruptcy.   We both always looked at it as we were still very lucky because we had such a great family, each other, good health and our integrity.   We thanked God for all we had and did not dwell on the monetary things we had lost.   We put our home on the market last October.  Larry had owned this home for over 30 years.   An old farm home built in the 1880 that Larry had restored.   It was home to us and our kids and grand kids, but we all realize that home is not the house but where the family is.

Last August 2011, Larry got really ill and was in the Lake hospital for over 11 days.   They thought he had a blood infection, but I believe it was the beginning of his carcinoid showing up.   Many tests and different specialists and medications later, we ended up again in the Hospital in Jefferson City where he was diagnosed with c-diff but the doctor found the tumors in his liver.   The doctor took a biopsy and a few days later we were told he had carinoid cancer and we were referred to Doctor Rifkin in Jefferson City.   He is an oncologist and after some more testing, Larry was referred to Doctor O’Dorisio in Iowa City.    

We are very thankful that all the doctors were so diligent in getting Larry diagnosed and to the right doctors for treatment and testing.   Doctor O’Dorisio has Larry scheduled for the Galium 68 scan this week . Doctor O'Dorisio does not believe that Larry will be a candidate for surgery, but will know for sure once he has the scan.   He has petitioned for Larry to go to Basel, Switzerland for the PRRT treatments.   He says it will be 2 or 3 treatments because of his liver burden.  

I am still learning a lot about the cancers especially from other carcinoid patients.   We are not quitters but pray that the treatments will help slow down the cancer growth.

My Galium 68 Scan Is Finally Scheduled

Thought I would bring you up to date on the carcinoid cancer journey.  The Galium 68 scan is scheduled finally for June 1st in Iowa City, Iowa at the University Hospital. 

My wife, Connie, and I will be driving there on the 31st of May and returning on June 2nd ..  hopefully with good news so we can move on to begin the treatment in Basel, Switzerland.

So far the Octreatide shots seem to be keeping the Carcinoid Syndrome at bay and I'm feeling pretty well other than a little shortness of breath.

My kids are planning a fundraiser here at Lake of the Ozarks  for Thursday, August 16. The hope is to raise a little bit of money to offset the cost of this thing.  It's incredibly frustrating that my insurance won't cover anything associated with the tests and the treatment.

My Carcinoid Cancer Journey

My kids suggested I chronicle my carcinoid cancer journey and experiences to share with others who may be experiencing the same thing. It's not the most comfortable thing to write about, but I'll do my best to share.

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The Early Warning Signs and Where I Go From Here

In August of 2011 we were RVing with some of our kids when I injured my lower back and was taken to the hospital by ambulance thinking I would need an epidural injection or two over a few weeks (I've dealt with lower back problems before) but this was not exactly the only problem.  Anyway after being admitted, the hospital said I had an infection in my blood that needed to be treated first so for several days they gave me strong antibiotics intravenously.  During this time I had diarrhea which was attributed to the heavy antibiotics which can cause what is know as C.dif an bacterial infection which they said I had also.

When I was discharge 11 days later I still had to get the epidural injections to correct the back injury so I went to the pain clinic in Jefferson City for that treatment.

A few weeks went by and the diarrhea continued and my stomach was not feeling right. I dealt with this for most of the remaining summer and throughout the holidays, finally the flushing showed up regularly so off to the hospital again for blood work, xrays, and a CT scan. The CT scan came back OK for my stomach, but Dr. McNelly said he saw 3 spots on my liver which he was very concerned about (these spots did not show in an earlier scan in August 2011)

Dr. McNelly set me up immediately with Dr. Rifkin, an Oncologist in Jefferson City.  After several more scans and tests (it had already metastasized to my liver) Dr. Rifkin said he was sure it was a Carcinoid Tumor in my mid intestine but they were unable to locate the origin.

More tests were needed so an Octrioscan was ordered 2/21/2012 and also 3/5//2012. I swallowed a camera and more blood work, (capsule test Dr. Paul King) to take pictures again trying to locate the origin and again with no luck.  On 3/7 2012 an endocolonoscopy still no luck finding the origin of the tumor.  3/8/2012 went to the emergency room at Capital Regional Hospital severe stomach pain from air trapped in intestine from endosolonoscopry.  These tests ran through January, February, & March of 2012.  Started the Octriotide injections in early April and another CT scan and blood work 4/11/2012.

Next step was to go to the University Hospital in Iowa City Iowa (4/6/2012) to see Dr. O'Dorisio an Endocronologist, his specialty is locating hard to find Carcinoid Tumors.  The first visit was a consultation, and now I'm awaiting the next visit to have the Galium68 scan, this is a much more defining pet scan to locate the original tumor.  This scan can also help determine whether the tumor is operable on not.  At this point Dr. O'Dorisio seems to think my liver is too burdened to operate but he said he would let the surgeon make that determination.

Once the Galium68 scan is done the first treatment will be scheduled in Basel,Switzerland.

Why Switzerland?  The treatment is very costly, but only 1/3 the cost  in Switzerland as compared to the USA. Dr. O'Dorisio said this type of Cancer is a slow growing thing like a turtle, but for some reason mine is acting like a turtle trying to run!  This is not very comforting but I feel that the Dr. O.Dorisio knows what he's talking about (this is current info as of 5/8/2012). 

Welcome to our Fight Carcinoid Cancer Blog

The Fight Carcinoid Cancer blog has been established for several reasons.  

My Dad, Larry Wardenburg, was recently diagnosed with Carcinoid/NET Cancer at the age of 65 ... a very rare and incurable form of cancer not typically diagnosed until it has metastasized to other places in the body, like the liver, pancreas, lymph nodes, or other organs. This was the case with my Dad - it wasn't diagnosed until it had already metastasized to his liver .  Like all cancers there are different treatments but one of the newest and most successful for Carcinoid cancer is the PRRT (peptide receptor radionuclide therapy). This is not a cure but it helps to slow down the progression.

Larry Wardenburg

The worst part for my Dad, and for the others who receive this diagnosis, is that PRRT  is not covered by Medicare and insurance because it is still considered experimental... even though the FDA has approved it. In the United States, the treatment is available at a few locations, including Houston. However, since it is still classified as experimental (only recently approved by the FDA), it is extremely expensive. In fact, the cost of the treatment is about three times the cost in the US compared to overseas. An alternative location for PRRT treatment is in Basel, Switzerland.

The purpose of this blog is to:

1. Chronicle my Dad's experience and my family's journey through his diagnosis and treatment. His plan is to go for treatment in Basel because it costs less than having the treatment in the US. These experiences may serve to benefit others who are diagnosed with Carcinoid.
2. Share resources that we find along the way, in the hope they may help others battling this disease.
3. Raise money to help my Dad get the treatment he so desperately needs.
4. Beyond my Dad's treatment, continue to raise money to help others who share this diagnosis get the treatment they need.

Without the coverage of insurance, the treatment for Carcinoid is costly. So many sites raise money that goes only to research for a cure ... which is greatly needed ... but those sites don't serve the immediate need of treating those who are already diagnosed.  We've found a significant void in this area and this is where we hope to make a difference.