CancerCompass message board discussion started by Malea on 10/3/2007 http://www.cancercompass.com/message-board/message/all,16747,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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.  Malea Wed, 03 Oct 2007 00:00:00 GMT 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 Christina23 Thu, 15 Nov 2007 00:00:00 GMT sorry, I see you got it in Holland.  I meant How did you get it?  Were you referred to a doctor in Holland? Christina23 Thu, 15 Nov 2007 00:00:00 GMT 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? Don Anthony Thu, 29 Nov 2007 00:00:00 GMT  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.  Malea Thu, 29 Nov 2007 00:00:00 GMT 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.    Malea Thu, 29 Nov 2007 00:00:00 GMT 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 Don Anthony Thu, 29 Nov 2007 00:00:00 GMT The website hyperlink did not show up in my last message.  See if this works:  http://www.prrt.nl/index.php?chap=3&sect=0 Click on the English tab !     Malea Thu, 29 Nov 2007 00:00:00 GMT 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.            Malea Thu, 29 Nov 2007 00:00:00 GMT 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 Don Anthony Thu, 29 Nov 2007 00:00:00 GMT 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.     Malea Thu, 29 Nov 2007 00:00:00 GMT 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.    Malea Thu, 29 Nov 2007 00:00:00 GMT 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 Don Anthony Thu, 29 Nov 2007 00:00:00 GMT 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.     Malea Sat, 01 Dec 2007 00:00:00 GMT 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? doxygirl Thu, 10 Jan 2008 00:00:00 GMT  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     GrannyGramps Wed, 26 Mar 2008 00:00:00 GMT 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 Plate Spinner Sat, 03 May 2008 00:00:00 GMT Good to read your comments on treatment @ Erasmus MC. My husband has had carcinoid for over 6 yrs. diagnoised and probably 5 yrs. prior. Dr. Kvols has referred him to Erasmus and we are just beginning to make  arrangements. Do you have a Dr., dept, phone # that you were able to contact directly to schedule treatments. I have e-mailed a Dr.Kam @ the center and even sent him all Dr.s reports & scan reports. My husband would like to make arrangements asap. Also, any info on discounted flights and infor on discounted hotel or lodging that may be provided by Erasmus. It is hard getting info. from overseas, Thanks shitzu Thu, 10 Jul 2008 00:00:00 GMT 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. Stu3045 Fri, 25 Jul 2008 00:00:00 GMT  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.crHi - 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.   douglascr Sun, 27 Jul 2008 00:00:00 GMT I have been having trouble getting through all of the red tape with the Moffitt Cancer Center in attempts to make an appointment with Dr. Kvols.  Do you have both his nurse and his email address and phone numbers.  The International Finanace department makes it difficult for people who pay out of pocket by requiring a huge deposit when I only need to present the facts to Dr. Kvols for his valued opinion.  They want a $ 5500 deposit when his fee is only $ 1135.00 for a consultation.  I live out of the country therefore it is causing a problem.  I need to talk directly with Dr.Kvols or his staff.  Thanks for the help and I hope you are doing fine. douglascr Sun, 27 Jul 2008 00:00:00 GMT Hello, I found this website after looking on internet about patients after receiving LU-177. My mother got LU-177 in Germany, one month ago.There is marvelous hospital called Centralklinik of Bad Berka, it is near Weimar. We were accepted there by profesor Baum. My mother had two surgeries before we went there, first one was carcenoid ilea, and after year there was mts in liver. In our country (member of EU) we were not able to receive nothing but worthless chemo therapy and another liver surgery, so we got offered tratment with readioactive isotope in Germany. We had to pay 7000 EURO, due reason birocratic paper work didn't go on well, but now we hope to get money refunded from government. My mother had 3  1x1 cm mts in liver, and Prof.Baum was hopeful about results, due reason my mothers blood test and kidneys are in good condition. Now after month, mother still gets pain in belly, and feels sick and tired, but it is better then if she would received unapropriate chemo. Linda_B Wed, 06 Aug 2008 00:00:00 GMT Hello Melea, I hope this letter finds you in good health. I believe it was you that responded to my email regarding Dr. Kvols. As you may have remembered I had difficulty in obtaining an appointment however with the information you provided me Dr. Kvols was able to make the appointment in 30 minutes which I was unable to accomplish in 6 weeks. I live in Costa Rica where I had been operated on (whipple proceedure) for a tumor that was located in the head of the pancreas. The biopsy here in Costa Rica indicated that I had a non functioning neuroendocrine tumor of the pancreas. The cancer had metastized to the liver and other areas and I was placed on the temodar xeloda combination. 45 days latter I had a cat scan that indicated that all four of the tumors that had reoccured had been either eliminated completly or reduced to a couple of millimeters. The tumor were originally a couple of inches in diameter.I had sent an example of my tumor to Dr. Kvols for analysis before our appointment. The biopsy that they performed indicated that I did not a non functioning neuroendocrine tumor but a mixed acinar endocrine which is extremely rare. Dr. Kvols was extremely optimistic and pleased with the effectiveness of the medication in my case. He had recommended that I continue with the same treatment and extended the term to 8 months from 6 based on my organisms ability to handle the medication. So I am doing great, have put back on all of the weight, am able to do just about anything I did before with exception of heavy lifting due to the surgery.I was very pleased that I was finally able to get around all the red tape and meet with Dr. Kvols. He is a very nice man and I can not say enough about the value of his work. I will meet with him again in early December and hopefully will have some more good news.Until then fight on, take care of yourself and thank you for the information. Douglas Myers douglascr Sat, 25 Oct 2008 00:00:00 GMT