Celebration - Neuroendocrine Cancer Survivor

Hi - I was diagnosed with Pancreatic Neuroendocrine Cancer in January of 2005.  Neuroendocrine tumors are in the family of carcinoid tumors.  I had a small grapefruit size tumor on the tail of my pancreas removed by Dr. Malafa at the H.Lee Moffitt Cancer Center in Tampa, Florida.  I also had Radio Frequency Ablation on several tumors on my liver.  My oncologist, Dr. Larry Kvols had me go through two blasts of Chemo - Cisplatin and Etoposide, but they did not affect the tumors, but maybe killed some of the cancer cells in my blood.  I then went to the Erasmus Medical Center in Holland.  There I received a Lu-177 Radio-Isotope through an IV which shrunk my tumors and saved my life.  This treatment is not available in the U.S. as of yet.    God led me to the H.Lee Moffitt Cancer Center in Tampa where Dr. Larry Kvols helped save my life through many modalities and treatments.  All I can tell you is that it's all worth going through because life is so fantastic now.  Never give up hope I have learned. The doctors are learning new things EVERY day.  If you are not strong enough to search for the best care, have someone do this for you.  Don't delay. 

Hi,

Can you tell me more about Lu-177 Radio-Isotope through an IV?  Where did you get it? What were the side effects?

 Thanks a bunch,

Christina

sorry, I see you got it in Holland.  I meant How did you get it?  Were you referred to a doctor in Holland?

I was diagnosed with pancreatic nueroendocrine islet cell tumor with mets to both lobes of the liver in June 2006. I started with a regimen of temodar and xeloda used together for 10 rounds.  Two weeks on and then two weeks off.  I had multiple liver tumors.  This reduced the size of those.  One marker tumor on one lobe was 13 cm and was reduced to 4.2 x 5 cm.  One the other lobe the marker tumors were 7 cm. and the other 6 cm.  These have been reduced to subcentimeters.  I have had good results from this chemo regimen.  I see Dr. Larry Kvols at the Moffitt in Tampa.  Can you tell me more about your trip and treament in Europe?

 

Hello - I am soooo happy for you that your tumors have shrunk - and considerably I see.  WOW !  Way to go.  But how are you feeling from the chemotherapy?  Did you have side affects from it ? 

The Erasmus Medical Center in Holland is where I went for the treatments that saved my life.  I was pretty far gone to say the least.  It was truly my last hope.  Erasmus MC Lutetium Treatment  - See if you can access the info through this link.  Dr. Kvols referred me there.    I met many others there with pancreatic or carcinoid cancer.  Many were 10 years out from their diagnosis !   So don't give up !    I had to pay out of my pocket for the treatments there.  All four trips overseas, hotels, and treatments cost me around $27,000.    If you are interested, speak to Dr. Kvols about it.  Also, if you need free air travel, I will share some companies that are assisting cancer patients.  Remember, Dr. Kvols is a clinician.  He is one of the most marvelous doctors I've ever known.  But he is a researcher - they all have a protocol and programs to follow. 

I would love to hear more about your treatment. 

I am sorry I did not answer sooner.  I was referred to Holland by Dr. Larry Kvols at the H.LeeMoffitt Cancer Center in Tampa, Florida.   Sweden, Germany and Italy are also doing these treatments as they have been very successful.   I had four treatments.  Each treatment cost 2500 euros and I had to pay for them out of my own pocket.   Then of course there are travel costs for airfare, hotels and meals, trains, taxis.  I spent around $27,000 total.  It was worth every penny.  I have more appreciation for life now than ever before. 

There is another doctor at the University of Iowa who also refers patients overseas.  His name is Dr. Odoricio, an endocrinologist at the University of Iowa in Cedar Rapids.   

Thanks so much for your reply!!  I have been off of the chemo since June 2007.  It was an oral treament.  I did great on it.  I had the usual depression of some of my blood counts, such as platelets and a slightly lower white blood count, but after six months of not being on the treament things are back to normal.  My last CT scan showed that my disease had stabilized. 

 Was the cost that you stated per visit or was that the total of all of the visits?  I am going in to see Dr. Kvols next Tuesday.  I will have a new CT and blood work then.  I was trying to see exactly what I should ask him about the great results that you received in Europe.

 

Thanks again,

 Don

The website hyperlink did not show up in my last message. 

See if this works:  http://www.prrt.nl/index.php?chap=3§=0

Click on the English tab !   

 

The four treatments in Holland were 2500 euros each.  Then I had travel costs such as airfare, hotels, taxis, trains and food.    Between $6-7000 for each trip is what it averaged.   The treatments were 6-8 weeks apart. 

There are many ways to save money if you ever have to make that trip.  The cost of the treatments though are always the same = 2500 euros.  You can get the xchange rate online anytime or through your bank. 

The treatments are administered by an IV over night in a special area of the hospital.  You are with a group of people all the time.  Two people to a room.  You eat meals together with the group. 

I just kept getting better and better each trip I made.  I was tired from the Lu-177 Radioisotope for about 6 months, but I have continued to gain strength each day since then.   

 

 

 

 

 

 

 

 

It is sooo good to hear of your good news.  When exactly was your last treament?  Did the treaments affect all of your tumors across the board or just targeted ones?  What (approximatly) was the % of reduction that you received from taking the treatments?

 Thanks so much for answering my questions.  May God continue to bless you in your journey!

Don