Celebration - Neuroendocrine Cancer Survivor

Question:  Do you have Octreoscans?  These are a specific radiation scan?  I have to go back to Moffitt in January for a CT scan and an Octreoscan.  It's a three day exam.    Maybe because you have not received the Lu-177 treatment that it is not necessary.  It seems that you are doing marvelous with what he gave you.  Dr. Kvols is soooo smart.  My tumors are hormone producing = Calcitonin with V.I.P.    Did your biopsy reveal any details about your tumors ?    I will certainly be asking Dr. Kvols about your treatment too.  Nancy Graham, Dr. Kvols Research Assistant, explained there are many modalities to treat these tumors.  

I had to look back on my records.   I had two 4 cm, two 2 cm, and several others on the liver too small to measure.  I also had a small grapefruit size tumor on the tail of my pancreas which was removed surgically.    The 4 cm were reduced to 1.5 cm, the two 2 cm were reduced to 1 cm.    From quarters to dimes so to speak.  Many of my tumors on the liver are no longer there.  They disappeared. 

Do you take Sandostation  b/k/a/ Octreotide Acetate injections to control symptoms?  Just curious what your symptoms were and how you control them.    OR maybe you don't have symptoms.  Most people have diahhrea or hot flushing.    The Sandostatin affects the DNA of the tumors they say.  All I know is that I am getting ready to stop taking the shots because I don't have symptoms any longer !  Praise God !    I can't wait to tell Dr. Kvols about that too.   I love to tell him I am one of his STAR patients !  Ha. 

Yes, I have had an otreotide (sp?)scan.  I had it right after I was diagnosed in June 2006.  My oncologist here in my hometown did one to see if I would react to sandostatin, which I get an injection of monthly.  This controls my symptoms of my particular tumor.  I have a hormone producing tumor also. 

Let's keep in contact I would like to hear of your progress and will share mine with you.

Don

Christina:  I did not hear back from you so I thought I would just make sure you knew about the Lu-177 Radioisotope treatment administered at the Erasmus Medical Center in Holland.  The website is below:  

 See if this works:  http://www.prrt.nl/index.php?chap=3§=0   click on the English tab.

You may contact Dr. Larry Kvols at the H.Lee Moffitt Cancer Center in Tampa, Florida for further information and referral.   I don't know your situation, but don't delay if you are in need.   

I also found that Dr. Odoricio, Endocrinologist at the University of Iowa in Cedar Rapids, Iowa also refers people to Holland.  Please also know that these treatments are now being done in Sweden, Germany and Italy. 

There is another doctor, Dr. Delpassand, in Houston, Texas that is administering High Dose Indium 111 that has a therapeutic effect on these tumors also.  He's at the Excel Diagnostic Imaging Center at 713-781-6200.    He has results available and literature available too. Just call them. 

God bless you on your journey.   

On 1/10/2008 doxygirl wrote:

Hi and congratulations on your excellent results! I will be going to Switzerland per Dr. O'Dorisio. I'm very interested in how to get free airfare. Who are the companies you said are working with cancer patients?

Hi,

My husband had his second meeting with Dr. Odorisio today, and he has mentioned Switzerland as a possibility, and although we have another appointment with him in June, he suggested that we get our passports renewed. 

 Have you received any information on airlines, or accommodations that you can share? When are you going to Switzerland?

 My husband has the fast growing neuroendocrine and is currently having chemo (carboplatin and etoposide) every three weeks.

Thanks much 

My mother is waiting to hear from Dr. Odo's office about whether or not she has been accepted by Switzerland for treatment.  Did you ever hear of any airlines that help or are more reasonable in costs to get to Switzerland?  I am still looking.

Thanks,

Plate Spinner

My husband has been diagnosed with neuroendocrine pancreatic cancer that has matasticized to his liver and the lymph nodes around his pancreas.  We are working with Dr. Richard Warner at Mt. Sinai in NYC.  If you get any responses to the airlines who help cancer patients or about accommodations in Rotterdam, I would really appreciate it if you would pass the info. on to us.  We are in the process of trying to get accepted for treatment in Rotterdam.

Thanks so much.  God bless and good luck to you.

On 10/3/2007 Malea wrote:

Hello Malea, I hope this letter finds you in good health.  My name is Douglas and I live in Costa Rica.  I had a neuroendocrine tumor removed from the head of my pancreas in February of 2007.  It was diagnosed as a non functioning type of neuroendocrine tumor.   18 month after post op I started having some stomach pains and was diagnosed with ulcers, I was placed on nexium and the pain subsided.  a month and a half later I developed the pains again however they were more severe.  I went in for another endosope and the ulcers had healed.  Then had another cat scan which indicated that I had 3 new tumors.  one in my liver.  I was not placed on a chemo therapy program by my original doctor surgeon and was then recommended to an oncologyst that placed me on the medication that Dr. Kvols is currently using.  A combination of Temodal and Xeloda.  Since the treatment started I have been fine, free of pain and have gained the weight that I lost from not eating during the episode with the ulcers.  My team both the surgeon, and oncologist have both met Dr. Kvols on occasions at medical seminars.  They have recommended me to him.  To be honest I have had a difficult time dealing with all of the red tape with the Moffitt Cancer Center in trying to set up and appointment with the Doctor Kvols.  Because I am an international patient and paying out of pocket for my treatment the want a huge deposit of money.  What I only need is to have the Dr. review my case and perhaps have another biopsy analysis on a sample of my original tumor.   I have offered to pay this up front with a deposit and to pay in advance for any additional work Dr. Kvols would recommend.   I keep going around and around with a puerta rican women in the International Finance department that hardly speaks english, I have more success speaking with her in spanish if you can believe it.  What I need is to obtain a phone number and a contact and email for Dr. Kvols office so that I may contact his nurse or even if I could send him an email directly.  Your message says that you went to the Erasmus Medical Center in Holland.  There  your  received a Lu-177 Radio-Isotope through an IV which shrunk my tumors and saved your life. Could you help me by telling me a bit more about this program and is it still not available in the U.S  Were you ever placed on the same medications that I am taking.  I read an abstract that Dr. Kvols is running a trail program with this two medications chemo for patients like ourselfs.  I wouild appreciate any information that you could send me regarding your experience and want to wish you well and thank you for any of your valued comments.  I can be reached directly @ kdmper@racsa.co.cr

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.