Neuroendocrine Type

My dad is fighting pancreatic neuroendocrine cancer.  He has had 2 unsuccessful rounds of chemo. and is now in a clinical trial with Dr. Yao at MD Anderson involving RAD001.  I am wondering if anyone has experience with this drug and what I should expect.  what if this doesn't help?  What is next?  Is there any other treatments available in the US, or any where else in the world? 

everything I have heard and researched says that chemo doesnt work on a neuroendocrine tumor and that the whipple is the only sure fire cure. is your dads tumor non resectable? I have read a book called "Beating cancer with nutrition." I think its a great book and although it is not a replacement for medical procedures, it is a great partner with them, i believe. candye

 

On 3/25/2008 tocco wrote:

My dad is fighting pancreatic neuroendocrine cancer.  He has had 2 unsuccessful rounds of chemo. and is now in a clinical trial with Dr. Yao at MD Anderson involving RAD001.  I am wondering if anyone has experience with this drug and what I should expect.  what if this doesn't help?  What is next?  Is there any other treatments available in the US, or any where else in the world? 

Hello - I was diagnosed with pancreatic neuroendocrine cancer with VIPoma, my tumors produce calcitonin which is rare.  I underwent surgery to remove a large tumor from the tail of my pancreas, then while in surgery, Radio Frequency Ablation was performed on a few tumors.  After recovering from that I was given chemotherapy which did not put a dent into the tumors.    After the chemotherapy I went to Holland to receive the Lu-177 Radioisotope treatments (4) which saved my life.  My tumors continue to shrink and many have disappeared.  I am 20 months post treatment.  As of February, 2008, the same treatment is now being performed at Excel Diagnostics in Houston, TX.  Contact them immediately to see if this can help your father.  Contact Dr. Delpassand at 713-781-6200, or Jennifer Hernanez at 713-341-3239.    My doctor, Dr. Larry Kvols, who is the world's expert on these type of tumors, is at the H.Lee Moffitt Cancer Center in Tampa, Florida # 813-745-7257.  I am alive because of the gifts of these doctors, and that I was very diligent, and continue to  be diligent.   Be strong for your father now and NEVER give up Hope. 

I recommend you go the carcinoid.org website and research some physicians for a second opinion. There are very few doctors that are considered "specialist" when dealing with this type of cancer.  I am partial to the group in Kenner Louisiana - Drs. Eugene Woltering, Philip Boudreaux, and Dr. Wang.  These doctors form a complete team in the same location - oncologist to surgeons to GI.  They are absolutly wonderful.. My husband was told by Houston doctors that he was inoperable and there was not really anything they could do.  He is about to under go his second surgery with the doctors in Kenner next month - after this sugery he is expected to be disease free.  Knowledge is power and we are talking about a life.  You must be aggressive.  God Bless - feel free to message me if you would like further information.

I am a 52 year old male with islet cell neuroendocrine tumor of the pancreas, (Glucagonoma).  I see Dr. Larry Kvols at the H. Lee Moffitt Cancer Center in Tampa, Fl.  Dr. Kvols is world renowed in neuroendocrine cancers. My oncologist in my hometown referred to me to Dr. Kvols.   I was diagnosed in June of 2005. My disease started in my pancreas and had metastisized to the liver.  I had many METS in my liver.  One tumor measured 12.9 x 10.2 cm.  I had an 85% coverage in my liver.   I saw Dr. Kvols in August 2005.  He started me on a clinical trial of Xeloda and Temodar which are two kinds of oral chemotherapy. I took this 2 weeks of every month for 10 months.  I also take Sandostatin each month.  The Sandostatin controls my symptoms. I have been off of chemo since June 2007.  The largest tumor as of a CAT scan in March 2008  now measures 5.1 x 4.2 and I have and overall reduction of all of the tumors. I orinally lost 52 lbs. but I now have gained all of the weight back. I feel great and am able to do anything that I want.  I pray that your father has success with his treatment, but wanted you to know of other options.    God Bless,  Capt.

Thank You so much for your reply!  As I'm sure you already know every little bit of information or good word is helpful.  I am truely happy for your success!  I just wanted to let you know of a drug I have heard about called Lu 177.  I believe it is a radio isotope.  I have been doing so reading and it seems to be pretty promising with tumor regression and stabalization.  If you get time Google it.  I'm not sure if it is here in the US, but I do know it is abroad. (Holland)  I did get word they are using it in TX at a place called Excell, but I have no first hand confirmation at this time.  I will be continuing to look into it.  I will keep the message boad posted.  Again, thank you for your help I will look into these drugs.  Best of Luck, you will be in my prayers!

I just wanted to say Thank You! Your tid bits of info. have opend several doors for me to investigate!!!!! I was told that the Excel is hoping to have the Lu 177 as of June 2008.  I also was put on a list to be sent the information  and updates as they move thru the process. I hope that you are doing well and again Thank You!  Love and Prayers

Tocco

 

On 3/28/2008 Malea wrote:

 

On 3/25/2008 tocco wrote:

My dad is fighting pancreatic neuroendocrine cancer.  He has had 2 unsuccessful rounds of chemo. and is now in a clinical trial with Dr. Yao at MD Anderson involving RAD001.  I am wondering if anyone has experience with this drug and what I should expect.  what if this doesn't help?  What is next?  Is there any other treatments available in the US, or any where else in the world? 

Hello - I was diagnosed with pancreatic neuroendocrine cancer with VIPoma, my tumors produce calcitonin which is rare.  I underwent surgery to remove a large tumor from the tail of my pancreas, then while in surgery, Radio Frequency Ablation was performed on a few tumors.  After recovering from that I was given chemotherapy which did not put a dent into the tumors.    After the chemotherapy I went to Holland to receive the Lu-177 Radioisotope treatments (4) which saved my life.  My tumors continue to shrink and many have disappeared.  I am 20 months post treatment.  As of February, 2008, the same treatment is now being performed at Excel Diagnostics in Houston, TX.  Contact them immediately to see if this can help your father.  Contact Dr. Delpassand at 713-781-6200, or Jennifer Hernanez at 713-341-3239.    My doctor, Dr. Larry Kvols, who is the world's expert on these type of tumors, is at the H.Lee Moffitt Cancer Center in Tampa, Florida # 813-745-7257.  I am alive because of the gifts of these doctors, and that I was very diligent, and continue to  be diligent.   Be strong for your father now and NEVER give up Hope. 

Dear Malea,

I hope that you continue to be healthy and strong in both body and spirit.

I have been following/checking the Message Board for information on neuroendocrine carcinoma.   You're a wealth of great information.   My husband is an MD Anderson patient and has been dealing with this particular type of cancer since 1989.   Thanks to the information you've posted, my husband has looked into treatments at Erasmus and is now working with Dr. Yao at MDAnderson to receive Lu-177 in Holland.   He has established contact with Erasmus and is now in the process of getting the necessary bloodwork and additional test results to Erasmus.    By the way, he did talk to Excel  and they do not have Lu177 yet but hope to have FDA approval by June '08. 

I plan to accompany him to Holland and I was wondering if you can share some travel logistics with us such as to how we would travel from Amsterdam airport to Erasmus, how many days we should plan to stay for his 1st trip, where family should stay while in Holland, etc.  And also what he can expect and how he should be prepared mentally for the journey.   

Any information would be greatly appreciated. 

Thanks!

 Lynn

 

 

See if you can contact an airline that will fly you and a companion overseas for your cancer treatment.  I pray you are able to travel the distance.  There is a five hour difference from the East Coast to Amsterdam.  Make sure you fly into Amsterdam in their morning.  Once you are in the Amsterdam airport, take a train from Amsterdam to Rotterdam (about 11.5 Euros).  The train station is right inside the airport.   I had a family member with me each time which was necessary for me.  Take the Snel train.  Snel means fast in German.  If you take the Stop train, you will stop in 15 stations along the way.  So make a note to take the Snel train.  The train times are posted in an area of the airport, are easy to read, and there is always someone to help you that speaks English.  The Holland people (Netherlands) are wonderful.  You will have to drag your luggage to the train, so hopefully you will have wheels on your bags.  When you get off the train in Rotterdam, there are cabs available.  I took a cab from the train station to my hotel.  I stayed at the Bilderberg Park Hotel in Rotterdam each time 011-31-10-4363611 (Just dial all the numbers only). You can use hotels.com to book the hotel reservation, but you may want to call them and check their Erasmus Medical Center rate which may be less than hotels.com.  This hotel is walking distance to the hospital and to the train station, but I took a cab (8 Euros) as I was not able to walk very far at that time.   ( But now I could !!!!!! )    The Bilderberg Park Hotel has a restaurant, excellent service, and many amenities including internet access.  They really took care of me each time.  I stayed 10 days the first time. There may be other hotels in Rotterdam that may be less cost.   I flew in on a Saturday, had labs, scans and doctor appointments on Monday and Tuesday.  I had four treatments at Erasmus, about six to eight weeks apart.  My treatment was two days (overnight), and usually started on Wednesday or Thursday and ended the following day.   The Erasmus Medical Center will tell you your specific dates and times.  I was with a group of individuals having the same treatment in a specific area of the hospital.   You will meet wonderful people from all over the globe. Even though some of the other patients and I did not share the same language, I felt close to them as we are sharing the same battle.  Each of us may have had anxieties, not felt the best, but we gave each other strength.  Their eyes will melt your heart and pull out compassion beyond measure.  I had a great experience even as I was sick.   You may want to do some additional traveling in the country if you feel well.   As you put your itinerary together, you may have additional questions that I will be happy to answer.  Just know you are in good hands at Erasmus.   Oh, one thing I will warn you about.  Staff infections are as common in the Netherlands as they are here in the U.S..  When you lay down at night, put your own pillow case under your head.  Bring and use those Lysol wipes to protect yourself.