HOME   I Carcinoid Links   I I   Update: Apr. 24, 2001.

    - Introduction
     -  1993 - 95    - My Diagnostic
    -  Oct. 1995    - My Open-Heart surgery
    -  Jan.  1996    - Laparascopic Surgery and Cholecystectomy
    -  Feb. 1996    - Combination of Hepatic Artery Clamping and  Chemotherapy
    -  Sep. 1996    - Rigth Portal Embolization
    -  Jan.  1997    - Laparatomy and a Metastasectomy trial
    -  May 1997    - My first Chemoembolization
    -  Oct. 1997    - Second Chemoembolization
    -  Feb. 1998    - Third Chemoembolization
    -  Jan.  2000    - Fourth Chemoembolization
    -  Sep. 2000    - LAR - Sandostatine

   Introduction:

        I am 65 years old now, and had worked as a Research Engineer in Nuclear Radiation Detectors, from sept.-1970 till Oct.-1995, at the Institut of Nuclear Physics, University Paris-Sud. See "My Publications".

        This carcinoid story belongs also to my wife, Nicole, who was and is present every day, at my side, and to my two sons, Olivier and Michael, and also to my grandchildren, Clementine and Aurelien, who all brougth me some sunshine when  future was a bit dark.

    My diagnostic:

        1993-94: I complained to my family doctor of diarrhea, flushing, fatigue, asthma, wheezing, shortness of breath, low blood pressure, dizziness, palpitations, asthenia.

        The only thing I wanted to do, and  could do, and do, was to do "nothing", just sleep !

        My doctor misdiagnosed psychosomatic problems and an Irritable Bowel Syndrome !! He told me later that he had never heard about carcinoid syndrome in his life !

        I had also noticed that some foods provoked severe hydric diarrheas: tomatoes, nuts, grapefruits, alcohol, but for my doctor it was only some allergic and age effects.

        Problems continued and worsened : hydric diarrhea with severe weigth loss, and heart problems. So my doctor send me to a "hepatologue-gastroenterologue-proctologue" for the diarrhea, but he found my heart quite okay, after a short exam with a stethoscope.

        Oct. - 1994: I had a Colonoscopy and an Abdominal Echography in the Clinique du Mesnil St. Denis, near Paris, and a Scanner  in the Hospital of Rambouillet. They found some tumors in my rigth liver, the biggest one had a diameter about 10 cm !!!

        Once more, both the radiologue and the hepatologue, misdiagnosed an Irritable Bowel Syndrome and non-malignant tumors in the liver which they supposed to be angiomas, hemangiomas!!!

        My weigth which had been 72kg has fallen to 65kg. I am 1.66m tall. I became very weak and a little walk of some 100m let me breathless and dizzy. I was still working, of course, because I had only psychosomatic problems and only an irritable bowel syndrome !!

        March - 1995: I got some severe pain in my liver, so I had another Abdominal Echography in the Clinique du Louvre, in Paris, another place, with another hepatologue and another radiologue, who both made the same false diagnostic, but with some hesitation, because the tumor volume had increased too much to be only an angiomas. I had received a letter from the hepatologue, several weeks later, who asked me to get an MRI exam, as soon as possible. Probably he had changed his mind, but for me it was too late. I want to see another physician.

        I was now quite sure that all the poeple I had seen, was wrong, so my wife, Nicole, taked  a private appointment with a great gastroenterologue of France, Professor J.-C. Rambaud, who told me my tumors could be malignant, and asked for a MRI exam and a liver biopsy.

        Pr. J-C. Rambaud is the chief of the Hepato-Gastro-Enterology Department of the Hospital "Saint- Lazare - Lariboisière" of Paris.

        Mai - 1995: After the MRI exam, made by Professor Sophie Chagnon in the Hospital at Garches, near Paris, I was told I had Carcinoid, a slow growing cancer.
        The dimension of the biggest tumor was now 13cm x 14.5cm x 9.5cm and occupied the segments IV, V and VIII of my liver. The smaller one has a diameter about 2cm and was in the segment VI. To confirm the diagnostic, Pr. S. Chagnon made a Liver Biopsy, in the Hospital "Ambroise Paré", in Boulogne-Billancourt, Paris.

        Because I had carcinoid, a kind of cancer, my medical insurance (Sécurité Sociale - Mutuelle Générale de l'Education Nationale) payed 100% all my medical expenses.

        Jun. - 1995: Pr. J.-C. Rambaud asked for a 5HIAA test. It was found a high level of urinary 5HIAA, near 300 mg/24h. He asked also for a research of the primary tumor with a Barium Roentgenologic Exam  and an Octreoscan.

        As I was aware that many physicians didn't know much, if not anything, about carcinoid, I had to look for informations by myself. Pr. J.-C. Rambaud, who had now saved my life, has given me some publications and also records of my medical exams.
        Then I was looking for medical literature about carcinoid in the Bibliothèque of the "Centre Georges Pompidou" in Paris every week-end, and also in medical libraries. And I found a lot. I had learned there that I was in a late stage of my carcinoid desease, if not the last one. I was a bit afraid I should get in this late complication stage of a carcinoid heart desease. But every one told me my heart was okay, after an auscultation with (only) a stethoscope.

        July - 1995: Barium Roentgenologic exam of the small bowel to find the primary tumor, made  at the Hospital Saint-Lazare, Paris. Nothing had been found.

        Sept - 1995:  Octreoscan with Indium-111 marked sandostatine, made at the Hospital "Bichat-Claude Bernard", in Paris. The exam needed a stay of several days at the hospital. The primary carcinoid tumor remained unknown, and now I had to have a surgical exam.

        So I had an appointement with Pr. Denis Castaing, a great hepatological surgeon, of the "Centre Hépato-Biliaire" of the Hospital "Paul Brousse" in Villejuif, Paris. I wanted, before any surgery, a cardiological exam, because I had too many problems with my heart, pain, dizziness, tachycardy, palpitations, shortness of breath. Pr. D. Castaing had immediately agreed with me.
        The chief of the "Centre Hépato-Biliaire" is Pr. Henri Bismuth, very famous for his liver transplants.
 
 

     My open-heart surgery:

        Oct. - 1995: Then I had an Echocardiography "Doppler" and the cardiologue, Dr. Mzabi, detected a severe carcinoid valvular desease which needed a tricuspid valve replacement before any other surgery. I was now quite sure that things were over for me, so I agreed with an open-heart surgery but without any hope of much survival.

        Before any surgery, I had to start a Somatostatine Analogue Therapy, two subcutaneous shots per day of 50µg Sandostatine.
        I took also every morning one tablet of  Nicobion 500mg (Nicotinamide - Vitamin PP).

        Finally, I got my "sick leave" and, during three years, could keep my wages !! I was sure I should  never take advantage of that.

        Before any heart surgery, one has to undergo also to a dental exam. So I had a dental panoramic radiography and they found two molars which have to be extracted by my dental surgeon.

        I had a Coronarography before the heart surgery.

        Nov. - 1995: Open-Heart Surgery made by Dr. Nottin, surgeon at the Centre Chirurgical "Marie Lannelongue" in Plessis Robinson, near Paris.  Replacement of the tricuspid valve by a "bioprosthesis of Carpentier n°29".

        Before my operation I had warned the anesthesist about carcinoid crisis induced by surgery or anesthesia. As she had never heard about carcinoid I had given her some references of medical reviews about the question. In that hospital, poeple was dealing  only with cardiological surgery, and nobody knows anything about carcinoid.

        I am deeply convinced that for carcinoid concerned patients one has to be informed, it's very important, question of some survival!!!

        After my open-heart operation I got some complications: urinary infection, an important weigth loss, from 65kg my weigth fall to 52kg, diarrheas which could not be stopped by sandostatine, and a severe asthenia. I was feverish and I got many antibiotics.
        But things worsened. Dr. Nottin supposed that it could be an evolution of my carcinoid and so I was transferred to the Hospital "Paul Brousse" in the "Centre Hépato-Biliaire" where the Pr. Denis Castaing want to undertake a surgery exam of my liver. I disagreed  because I was to weak after my open-heart surgery, I needed some rest and also some cardiological reeducation. My weigth remained at 52kg, I was depressed and I was shaking all over all the time. It was a bit terrible.

        I was then convinced to be in the last stage of my carcinoid desease and didn't want to much surgery anymore. Better a "wait and see", and should that final event arise, so a death with some dignity. A this point I had not very much hope anymore. I experienced difficult times. I was sure to have only some months of survival. It was also the opinion of Dr. Nottin, and of my family too, who told me that some months later.

        My medication : Sandostatine, Azantac 150 (anti-ulcerous, antihistaminic), Mictasol (urinary antiseptic), Calciparine (anticoagulant), Lexomyl (anxiouslytic), Mopral (anti-ulcerous), Specialfoldine (folic acid, antianemic)

        Dec. - 1995: I got in the special Cardiological Reeducation Department of the "Centre Medico-Chirurgical de Bligny", near Paris, for my cardiological convalescence. There, the Dr. Sonia Corone-Alden, very knowledgeable about carcinoid, a very nice person, gave me to read some publications concerning carcinoid heart desease. It was a good place, with very kind poeple.
        I recovered in about a month and could have Christmas at home among my family. It was a great time. There was a little hope now to have a bit more survival.

        My medication: 50µg Sandostatine shots, twice a day, by self-administration, Mopral (20mg/day, Omeprazole), Fraxiparine (1 shot/day, by self-administration, anticoagulant).

        My sons, Olivier and Michael, have also found on the Web, some medical publications concerning carcinoid, of the greatest interest to me, for instance a famous one:

        "An Odyssey in the Land of Small Tumors" by Charles G. Moertel, MD, Mayo Clinic, and published in the "Journal of Clinical Oncology", Vol 5, N° 10 (October), 1987 : pp 1503-1522.

   Jan. - 1996: I had my Laparoscopic Surgery. Pr. D. Castaing and Dr. Parc Yann looked for the primary tumor but didn't find it. My gall bladder was removed (Cholecystectomy), a prophylactic removal to avoid some side effects of Sandostatine, such as gallstones or sludges. And they put around my hepatic artery a Clamping Set.

        My big tumor was unoperable ! My primary tumor unknown ! Later, I had also a Groshong (double chamber) port-a-catheter implanted on the rigth side of my chest, this was done under a local anesthesia only. The "Groshong" has to be flushed every month with a physiological serum.

   Feb. - 1996: Combination of Clamping and Systemic Chemotherapy.

        First I had (J1, on monday) hepatic artery clamping, made by Pr. D. Castaing. The clamping lasted  about 12 hours. I had to take IV Sandostatine to stop carcinoid crisis, and also some morphine to stop pain. My anesthetist, Dr. Luce Kuhlmann, was wonderful and very knowledgeable about carcinoid and could manage without any problem both the carcinoid crisis (Sandostatine),  the pain (morphine) and the vomiting (Kytril).

        My Carcinoid Crisis began with a very big flush, I was quite a redskin, than I had an hypersecretion of saliva, and a big sweating and shivering, I  got the chills, I was freezing, and I had a rapid increasing of my blood pressure, till 190mm Hg, and than nausea and vomiting, with abdominal pain mildered by a continous morphine intake. The crisis could be stopped everytime with a Sandostatine IV shot.

        The disclamping procedure was done on J2, thursday, in the morning, and so the chemotherapy could start in the afternoon. I had morphine all over the nigth to manage pain in my liver.

        5HIAA was about 200mg/24h.

        I had Systemic Chemotherapy using a combination of 5FU (Fluorouracil) and Zanozar (Streptozocine) from J3 to J6 (Saturday), which need a double chamber port-a-cath. I got about 850mg Zanozar and 650mg 5FU per day, from J2 to J6.

        Every day, before the chemotherapy, I had to take some Kytril (antiemetic, to avoid vomiting and nausea) and Soludecadron (anti-inflammatory).

        This type of chemotherapy is described in a publication of Charles G. Moertel and all:

        "Streptozocin alone compared with Streptozocin plus Fluorouracil in the treatment of advanced islet-cell carcinoma" published in "The New England Journal of Medecine", Vol 303, nov 20, 1980, n° 21, pp 1189-1194.

        Apr.- 1996: Death of my mother. She was 88 years old. She lived in the East of France with my sister Odile and my brother-in-law, Dr. Jean-Claude Weidig, surgeon at the hospital of Forbach, in Lorraine, my native country. I lived there, in Paris, about 500km from her. I never told her about my carcinoid, because she had severe heart troubles. She had an heart attack, during a nigth at the hospital, after a phlebotomy. She died quite alone, so unexpectedly. It was so terrible and it takes me a very long time to overcome all that pain. I loved her so much. So has it been also with my sister, Eliane, fifteen years ago, who died at 44 years (May-1981) from a cancer (pancreas), overnigth too, Nicole and I have been staying at her side. My father died at 84 years (Feb.-1991), also quite alone during a nigth at the hospital.

        After 6 months (one week per month of chemo.), we could not obtain a great improvement with that sequential hepatic artery occlusion and chemotherapy. Only some little tumor necrosis and, maybe, a decreasing of the 5HIAA level which was now about 100mg/24h.
 

        I had another Octreoscan Indium-111 made by Dr. J. Lumbroso at the "Institut Gustave Roussy" in Villejuif.  The bowel preparation was made with COLOPEG. Nobody had told me I had to interrupt my 50µg Sandostatine shots before Octreoscan. Dr. J. Lumbroso was afraid it could have been some interferences, but found  nevertheless the exam O.K. No other new mets were found and my primary tumor kept unknown, maybe due to some interferences...

        I had also to increase my Sandostatine dose to 100µg, and to take Imodium 2mg (Loperamide, antidiarrheic) to stop diarrheas and flushing. And it worked fine.

        Oct. - 1996: I had a Volumetric Scanner, my left liver measured 370cm3. I had also an Echo-Endoscopy of my stomach and duodenum (a gastroduodenoscopy !), but nor tumors and nor anything wrong.

        Nov. - 1996: I had another Volumetric Scanner : the volume of my left liver had increased to
535cm3. Surgery was now possible, but I had got a new urinary infection and we had to wait till january.

        Dec. - 1996: I has written a letter to Dr. Charles G. Moertel for some advice about large hepatectomies in carcinoid therapy, but Dr. Joseph Rubin from "Medical Oncology" of the Mayo Clinic, answered me that Dr. Moertel had passed away. It was really bad news, because, for me, he was the most knowledgeable doctor about carcinoid I know.

    Jan. - 1997: Laparatomy and a Metastasectomy try.

        I had to thank my anesthetist, Dr. Luce Kuhlmann, because I had never had too much pain during my hospitalization. Pr. D. Castaing and Dr. Ariche Arie tried again a resection of my liver mets, but the tumor remained unoperable. They could not resect the tumor because it was wrapped around the left sus-hepatic vessels on a length of 5cm. Only one little metastase with a diameter about 5mm, could be removed from the left liver. So it was anyway, a big operation for quite nothing. But we have to try it.

        Pr. D. Castaing proposed me now a chemoembolization. As I have had a portal embolization of my rigth liver I was not confident in an arterial chemoembolization of the same rigth liver. I had read some papers about that. A friend of mine, Dr. Gérard Amerein, gastroenterologue at the Hospital of Sarreguemines, in Lorraine, had send me some papers in french.
        So I had an appointment with Pr. J.-C. Rambaud for advice and we decided to consult with Pr. Alain Roche, a great specialist in interventional radiology and who has published, with other poeple, about chemoembolization, for instance:

         "Transcatheter Chemembolization of Progressive Carcinoid Liver Metastasis" published in "Radiology", Vol 189, N°2, Nov 1993, pp 541-547. Authors: E. Therasse, MD - F. Breittmayer, MD - A. Roche, MD - T. De Baere, MD - S. Indushekar, MD - M. Ducreux, MD - P. Lasser, MD - D. Elias, MD - P. Rougier, MD.

        Pr. A. Roche is the chief of the "Interventional Radiology Department" in the "Institut Gustave Roussy", Villejuif, Paris.

        Pr. D. Castaing agreed too with a chemoembolization made by Pr. A. Roche.
        Pr. A. Roche told me that chemoembolization could be impossible after a portal embolization, but he was interested in a trial. And so was I.

        Feb. - 1997: 5HIAA decreased to about 55mg/24h.

        First, Pr. A. Roche made an Arteriography, to look if the chemoembolization could be made. Then I had an intra-arterial injection of an iodized oil (Lipiodol)-cytotoxic drug mixture followed by embolization with an absorbable gelatin sponge. The cytotoxic drug was 70mg of Adriamycine. I had to stay in hospital  about 8 days, where I had a high dose of Sandostatine.
        When I got home I had fever and nausea which lasted 3-4 weeks, because the biological cytolysis was very important, and the reason seemed to me quite clear : I have had an arterial chemoembolization after a portal vein embolization, this was a bit rough for my rigth liver !
        In a first time, Pr. A. Roche thougth about an infection, and my new family doctor, Dr. O. Chaumont, who didn't find any infection, put me nevertheless on Augmentin, a strong antibiotic with a very large spectrum. I have had some hard times. I stopped my fever (39°C) and some pain with several  tablets of Dafalgan (paracetamol) per day.

        Dr. O. Chaumont put me also on Creon (pancreatic enzymes), and it worked fine, no more fats in my stools, which had probably been  a side effect of Sandostatine, but which could also have been a consequence of the gall bladder removal, or both.

        Jun. - 1997: A Control Scanner, made by Dr. Buthiau, showed a tumor reduction of about 55 to 60 % !! It was quite wonderful!! And also a reduction of the compression of my porto-sus-hepatic vessels. Nevertheless, the tumor remained unoperable. Pr. A. Roche was really satisfied about his trial : a chemoembolization after a portal embolization worked wonders, only a bit rough for the patient. It was the first time he was doing such a treatment.
 

        Nov. - 1997: The  Scanner Control  showed a new tumor reduction about 15 to 20 %.

         5HIAA level decreased to about 30mg/24h. The decreasing could also be due to the Sandostatine.

   Feb. - 1998: My third Chemoembolization, made by Pr. A. Roche. A stay of 6 days at the Institut Gustave Roussy. At home, I had still fever during about 3 weeks.

        Apr. - 1998: The Scanner Control  showed a new reduction, supposed by Dr. Buthiau to be of about 55 to 60 %. The total reduction since May 1997 was about 85 % , said Pr. Roche !! The volume of the left liver has increased so much that it represent now, 70-80 % of the hepatic functional volume ! My liver was quite dystrophic.

        Jun. - 1998: Pr. J.-C. Rambaud proposed me to stop the Sandostatine which was 100µg shots, twice a day.

          Sep. - 1998: 5HIAA was about 30mg/24h.

        Oct. - 1998: A Thoraco-Abdominal Scanner made by Dr. Buthiau. My lungs were okay and the radiologue found that the tumor regression was still going on.

        Abdominal Echography and a Doppler of the left hepatic vessels, which were found permeable, made by Dr. Odile Ghemard  at the "Centre Hépato-Biliaire" of "Paul Brousse". She found also 3 little mets in the left liver.
        Things seemed not too bad, so I wanted again a "wait and see". And have also a good time  at Christmas with my family.

        Nov. - 1998:  Three years of full wages are over, and from now, I'll got only the half part of my wages. I have to think about my retirement.

        Jan. - 1999:  Scanner by Dr. Buthiau. Tumor regression seemed still keeping on, about 22 to 25%. And I was so asymptomatic, I almost forgot I had carcinoid ! Nevertheless I had to stay at home, because I was very weak and I got tired, very fast, of doing quite nothing. If I want to do something, it takes me a lot of time, and I have to take a big rest very often.

        Feb. - 1999: Echography - Doppler of my Tricuspid Valve Prosthesis. All worked fine, everything was O.K. I need a cardiological follow-up, the mean lifetime of my tricuspid prosthesis is only about 7 years.
        I had an appointment with my surgeon, Pr. D. Castaing, who proposed me to try a total curative surgery, after he had examined my scanner. He told me he could remove all my mets this time. I could hardly believe it, it seemed so miraculous. I agreed and we fixed the date for the surgery, the 1st April !
        At home I thougth it over and over. I was in a phase of tumor regression, and this was not a case of an emergency for surgery. I was also a bit skeptical, I just couldn't believe it. It seems to me it would be better to still wait some months, and let that tumor regression going on.

        I had not forgotten what Dr. C.G. Moertel had written about some carcinoid patients:
    - "For many patients -- for most of them early on, no treatment is the best treatment. Manage them symptomatically as long as you can." I also had got some experiences with my previous surgeries. It always seemed to me that my big liver metastase would be unoperable, and would keep unoperable ! So I want to take it easy, and wait.

        It seemed important to me to have a good summer and some holidays without any trouble, like surgeries or any other therapies. I needed rest! So I asked for advice Pr. J.-C. Rambaud, who agreed with me under the strict condition to survey the tumors evolution, with a scanner, every three months.

        May - 1999: Scanner made by Dr. Catherine Patriarche, because I wanted this time my scanner made by another radiologue. I was a bit suspicious, still skeptical. And the scanner was indeed different !! No more tumor regression anymore!  The greatest tumor remained always wrapped around the left hepatic vessels !! So this mets remained still unoperable ! I knew it ! So really bad news.

        And some other bad news, about ten new small mets were found in my left liver, some too small probably to be detected in the previous scanners. As carcinoid mets are slow growing tumors, it's not a matter of great urgency. Pr. J.-C. Rambaud proposed me to see again Pr. A. Roche for advice about thermal ablation this time. I had also to see again Pr. D. Castaing, to show him my new scanner.

        5HIAA had increased to about 50mg/24h, probably due to the new tumors.

        Jun. - 1999: I had an appointment with Pr. A. Roche, but he was ill and so I had seen Dr. De Baer, also working at the "Institut Gustave Roussy" (IGR), where he is dealing with thermal ablation. He told me to look with Pr. A. Roche for a new  chemoembolization. He think that my response would be much better than with thermal ablation. Indeed chemoembolization had worked wonders for me.

        Jul. - 1999: I had, once again, a very bad urinary infection with much fever, and which lasted till the end of august. All infections are very dangerous for my heart, because of my tricuspid valve replacement, I could get some endocardite. This urinary infections are recurring and recurring since my open-heart operation. Before, I had only experienced some rare urinary infections, since my protastectomy in 1984.

        My medication: Oflocet 200mg (Ofloxacine, antibiotic, 2tab./day), Ultra-levure 50mg (Saccharomyces boulardii, 4cap./day), Nicobion 500mg (Vit.PP, 1tab./day), Ester-C Plus 500mg (Vit. C, 1cap./day), Mopral (1cap./day), Creon (1cap./meal).

        Oct. - 1999: I had my appointment with Pr. A. Roche who, after an Echography of my liver, agreed to try again chemoembolization.

         Nov. - 1999:

        1.11. - I decided to retire, because I'll reaching the retirement age, 65 years, feb. 1st. 2000.

        22.11. -  Appointment with Dr. O. Chaumont who asked me to make an echography, a scanner, a 5HIAA and a blood test.

        30.11. - Scanner made by Dr. C. Patriarche who has observed an augmentation of the volume of all my hepatic tumors. The biggest one, with a large necrotic center, had increased from 125x70mm to 140x80mm, the second one had increased from 25mm to 35mm. All the other little new tumors had increased too.
        After this scanner and for the first time, I got very sick, probably due to the iodine intake. I had nausea, fever, hypotension (below 10cm Hg) and pulsation about 120p/mn, and this lasted one week.
It could be due also to  big serotonine secretion because I was not under Sandostatine.

        Dec. - 1999:

        6.12. - 5HIAA had increased too, but I had not yet any carcinoid symptom. I had three tests:
                        6 Dec. -  120mg/24h
                        7 Dec. -  128mg/24h
                        8 Dec. -  136mg/24h

        17.12. - Blood test. Some creatinine, 14.4mg/l.

        29.12. - As my carcinoid was coming back, I had an appointment with Pr. A. Roche. We fixed the date for the 4th Chemoembolization,  Jan. 26th, 2000.

        The previous CE had been in Feb. 1998. I was near two years without any treatment. And almost quite asymptomatic !! Only weakness and fatigue, I need to sleep from 12 to 18 hours per day.

        In 1995, I was in a very late stage of a carcinoid desease, heart involvement which need an open-heart surgery, high 5HIAA level, a very big unoperable tumor, and nevertheless I could reach the millennium 2000 !!! This means that in carcinoid there is always some hope ! And there, I want to thank, once more, Pr. A. Roche, for his chemoembolization which worked so wonderful !!

    Jan. - 2000: My 4th Chemoembolization:

        14.1. - I had my appointment with an anesthesiologist, Dr. Hentgen of the IGR, for my 4th CE.
I told her that I was not on Sandostatine. In the previous CE I had a high dose of Sando, near 1500µg.
I told her too, that I want to have my Kytril just after my CE, to avoid the spasmodic vomiting which could reopen my femoral artery wound. I had already experienced such a reopening in my 2nd CE.
          18.1. - Follow-up appointment with Pr. J.-C. Rambaud.
        24.1. - Follow-up appointment with Dr. O. Chaumont.

        26.1. - My 4th Chemoembolization was made, once more, by Pr. A. Roche. The CE has taken 2h30, Pr. A. Roche tried to treat all the tumors of my liver. This time, I have got 50mg of Adriamycine, 10ml of Lipiodol. The arterial embolization was made with Curaspon.
        I was given, before the CE: Atarax (anxiouslytic, antihistaminic), Sandostatine (only 100µg !), Augmentin (antibiotic). I stayed 8 days at the hospital (IGR).
        They didn't give me the Kytril on time, I so often asked for. The interns and nurses told prefering Zophren. I suppose I never got my Zophren too, probably because nurses were on strike, and so nausea and vomiting started just after the CE and lasted 24h. I was vomiting all over the nigth. The vomiting was not too spasmodic and I didn't experience that reopening of my arterial wound. I got my Kytril only the next day and the vomiting stopped at once !!

        Zophren and Kytril are both antiemetics, or antagonist of serotonin, or antagonists of 5-HT3 receptors. The serotonin liberated during anti-cancerous treatments, get to the 5-HT3 receptors and initiate nausea and vomiting. These receptors are very fast ones and the reactions are immediate. The fixation of Kytril or Zophren on 5-HT3 receptors prevent serotonin occupying these centers and thus avoid nausea and vomiting.
        31.1. - Echography of my bladder and kidneys, made by Dr. Elisabeth Girard of the IGR. She has found on my left kidney, two cyst with a diameter of 4 and 6cm, and on my bladder, two "diverticules centimètriques vésicaux".

        Feb. - 2000:

        17.2. - Blood test, still some creatinin, about 14.5mg/l

        22.2. - A control Scanner, made by Dr. C. Patriarche, showed already some tumour reduction. The biggest tumour decreased from 140x40 to 120x70mm, and the second one, from 35 to 28mm. All tumors had fixed Lipiodol. This time I didn't want any iodine.

        24.2. - Blood test, still some creatinin, 14.6mg/l

        Mar. - 2000:

        3.3. - Blood test, creatinin 13.7mg/l. A lowering of platelets, 144,000/mm3.

        15.3. - 5HIAA is about 100mg/24h. It has decreased from about 130mg/24h to 100mg/24h. And blood test was OK.

        Appointment with Pr. A. Roche. He told me that all things seemed OK, blood test, tumor shrinkage, and there was no evidence to put me on sandostatine or to make a new octreoscan.

        Apr. - 2000:

        28.4. - 5HIAA is about 78.5mg/24h, so it seems decreasing a bit.

        May. - 2000:

        4.5. -  Echocardiography - Doppler. Dr. Mzabi told me that I had to make now a follow-up exam every six months, because he had observed some little modifications of my tricuspid valve. The mean lifetime of my tricuspid bioprosthesis was indeed only seven years. All other cardiological functions were OK.

        Jun. - 2000:

        13.6. - A Liver Scanner, which was made by Dr. C. Patriarche, who observed a resorption of the tumoral Lipiodol and a shrinkage of the global tumoral volume. But it remained many hypervascular lesions. She also reported a pancreas tumor with a diameter of about 18mm, which could have been seen already in my scanner made in november 1999, but nobody had noticed it.
        Pr. A. Roche wanted this scanner made with iodine. And once again I got sick as in november 30th. But only after three days of the iodine intake. This time I had only nausea, some shivering, diarrheas and fatigue. It lasted almost a week.

        20.6. - Appointment with Pr. A. Roche. Once again, Pr. A. Roche seemed satisfied about the evolution of my tumors. The decreasing rate of my 5HIAA was OK for him and he said it was no need to put me on sandostatine. I had no carcinoid syndrome, and I was quite asymptomatic. He told me also, that the tumor in my pancreas was not worth worrying too much about. It seemed to him that the pancreas tumor has decreased too since november 1999. He found my blood test OK, and fixed an appointment with me for the 12th december.
        So I hope enjoying a sunny season once again. Life can be so beautiful sometimes, also for a "Noid" with a liver full of tumors. I have more than ten tumors functioning.

        My medication:  Nicobion 500mg (1tab/day), Creon 12000 U (2 cap./day), Mopral (1 cap./day). And occasionally: Loperamide or imodium to stop diarrheas, Praxinor to stop hypotension.

      Sept. - 2000:     Sandostatine LAR Depot (Octreotide acetate for injectable suspension)

        19.9. - Appointment with Dr. O. Chaumont. I couldn't really enjoy summertime, I was often too tired. I got also some carcinoid symptoms: hoarseness, some flush, many diarrheas, hypotension, fatigue, closely connected with stress and alimentation. It looks like a relapse of a carcinoid syndrome. So Dr. O. Chaumont wanted a blood test, a 5HIAA and an abdominal echography.

        5HIAA :    22.9.  -  142 mg/24h
                         23.9.  -  167 mg/24h
                         24.9.  -  196 mg/24h
        25.9. - Blood test was OK

        With such a high 5HIAA level I had to take care of my alimentation. I have found a very informative paper presented by Monica Warner, at the "CARCINOID SYMPOSIUM" at Sarasota, Florida, May 11, 2000: "Nutritional Concerns for the Carcinoid Patient".
And it helped me to get a bit better quality of life! Less diarrheas and less flushs.

        Oct. - 2000:

        11.10. - An Abdominal Echography made by Dr. Luc Rotenberg (Clinique Geoffroy Saint-Hilaire, Paris-5°). Here I got very bad news! My biggest tumor, 103 X 77 X 73 mm, remained wrapped around my rigth sus-hepatic vein. The pancreas tumor was now 20 X 22mm. Dr. Rotenberg told me that I had now so much tumors, he cannot count them, with diameters ranging from 10 mm to 50 mm. So I have to stop my "wait and see" philosophy and have to struggle again for some survival, hoping that's not too late.

        13.10. - Appointment with Dr. O. Chaumont, who asked me to get an appointment with Pr. J.C. Rambaud for a new Sandostatine prescription. It was Pr. J.C. Rambaud who stopped my Sando, in june 1998.
        I was without Sando during more than two years ! Maybe it would have been better to keep me on Sando and so avoid this new tumor progression. Here also I have found an interesting paper presented by Eugene Woltering, at the "CARCINOID SYMPOSIUM" at Sarasota, May 11, 2000:  "The role of Sandostatine analogue in the reduction of tumor growth"

        24.10. - Appointment with Pr. J.C. Rambaud, who put me again on Sando. A long-acting release (LAR) shot, 20mg, every 28 days and  a 50µg Sando, twice a day, during the first 10 days. Pr. J.C. Rambaud wanted also a scanner of the pancreas.

        28.10 - My first Sandostatine L.P., 20mg, I.M. shot. It was Dr. O. Chaumont who made that first LAR shot. I hadn't got any side effect. I have found prescribing information on the net : Sandostatine LAR Depot (Octreotide acetate for injectable suspension)

        Nov. - 2000:

        24.11. - My second LAR shot, made by Dr. O. Chaumont. No side effects.

        Dec. - 2000:

        5.12. - A control Scanner of my Liver and Pancreas, made by Dr. Catherine Patriarche, who asked me to take, two days before the exam some tablets, ATARAX, 25mg, and TAGAMET, 800mg. I got also with the iodine shot, some CELESTENE, 8mg. But once again and once more I has been getting sick, three days after the iodine intake. I was aching all over, I couldn't move, and it lasted almost a week. But nor nausea, nor fever, only aching. With some capsules of DI-ANTALVIC (paracetamol, 400mg) per day, I could get rid of all the pain after a very big sweat. It seemed like a kind of flu, but it wasn't one.
        Dr. C. Patriarche didn't agree with Dr. L. Rotenberg's report. She didn't find any modification with her exam made in june. She found the number and the volume of all my liver tumors unchanged !!! Seemed to be good news, but there was some too high 5HIAA level !

        11.12. - A visit of Dr. O. Chaumont, who wanted to be sure I had no infection, asked for a blood test. He asked also for a 5HIAA test.

        12.12. - Appointment with Pr. A. Roche, who agreed with Dr. Patriarche's observations. He found my situation unchanged since june, and it seemed to him that it was needless to untertake a chemoembolization now.We could still wait about six months more. So he gave me an appointment for 15.5.2001. And I got another prescription of LAR Sandostatine.

        18.12. - 5HIAA ( 5-Hydroxy-Indol-Acetic-Acid) was about 114 mg/24h.

        22.12. - My third LAR shot, made by Dr. O. Chaumont.

Jan. - 2001

        23.1. - My fourth LAR.20mg I.M. shot, made by Dr. O. Chaumont.

        31.1. - 5HIAA : 163mg/24h, I think I should have to increase my LAR dosis, so I took an appointment with Pr. J.C. Rambaud for advice and a follow-up.

Feb. - 2001.

        7.2. - Enzymology:   - Gamma-Glutamyl-Transferase :...... 328 UI/l  (10 <N< 45)
                                        - Phosphatases Alcalines:.................. 612 UI/l  (N< 290)
                 Glycemy:  1.00g/l  (0.7 <N< 1.05)

        High values of both Gamma-Glutamyl-Transferase and Phosphatases Alcalines means there are some hepatic problems. I have some pain, from time to time, in my liver and I have to observe some diet.

        16.2. - A follow-up appointment with my cardiologue, Dr. H. Mzabi. My Electrocardiogram was O.K. I had also a Doppler- Echocardiography. And here too, my tricuspid bioprosthesis "Edwards Carpentier" was O.K.. I have had my tricuspid valve replaced the 3-11-1995.

        17.2. - My fifth LAR, 20mg, ( Dr. O. Chaumont), without any problem.

        23.2. - Appointment with Pr. J.C. Rambaud, who wanted me to take LAR, 30mg, because of some remaining carcinoid symptons and still a high 5HIAA (N < 6mg/24h). He seemed very optimistic about my case.

Mar. - 2001.

        12.3. - Appointment with Dr. O. Chaumont

        5HIAA:   13.3. -  115mg/24h                 Creatininury:   1.04 g/24h  (0.8g/24h  <N<  1.8g/24H)
                       14.3. -    98mg/24h                 Creatininury:   1.02 g/24h
                       15.3. -    82mg/24h                 Creatininury:   1.13 g/24h
 

        16.3. - My sixth LAR, 30mg, made by Dr. O. Chaumont, who wanted also 5HIAA test during three days.

Apr. - 2001.

        5HIAA:   3.4. -   108mg/24h                 Creatininury:    0.98g/24h
                             4.4. -   107mg/24h                 Creatininury:    1.00g/24h
                       5.4. -   114mg/24h                 Creatininury:    1.00g/24h

        13.4. - My seventh LAR, 30mg,  (Dr. O. Chaumont). This time I experienced some adverses reactions :
 - Pain at the injection site, left side, so that sleeping on the back, or sitting, became some difficult. That pain kept on near a week, and spread out to other sites, left knee articulation, left groin, back pain, coxalgia,.... and also to many muscles. I had to take some antalgic like Di-Antalvic (4OOmg of paracetamol) because I coudn't walk nor move, and it helped me a lot.
 - Flu-like symptoms, I feel shivery. Some fever, below 38°C or 100°F. Also many sweatings. I had a mild cold and some quinsy.
 - Urinary bacterial infection, hematuria.
 - Hypotension, blood pressure below 100mm Hg, pulsation from 80 to 95 pulses/min.
 - Fatigue, severe fatigue, I need sleeping all over the time, nigth and day.

        19.4. - Visit of Dr. O. Chaumont, who put me on antibiotics, Augmentin (amoxicilline 500mg, acide clavulanique 125mg), six capsules per day. After only two days, things get better, fever and pain disappeared. But all that was replaced by secondary effects of the Augmentin: very severe diarrhea, more than five hydrics stools per 24h.
                Dr. O. Chaumont asked also for a blood test, and a hemoculture.

        21.4. - Visit of Dr. O. Chaumont, who put me on antidiarrheics, Lactéol fort 340mg (10 billions of Lactobacillus acidophilus LB), Ultra-levure 50mg ( Saccharomyces boulardi), Lopéramide or imodium. There are some contraindications : Ultra-levure is not indicated for patients with a PAC (central veinous catheter), imodium is not indicated in antibiotic treatments (some risks of colitis). But I had to stop the diarrhea.
 

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