-Cheryl- Posted October 17, 2003 Share Posted October 17, 2003 Carleen, Here is that telephone number to Angel Flight (800) 296-1217. It is a group of volunteer pilots who will fly patients fee anywhere in the world for treatment. I hope today was a better day for you? I had kind of a melancholy day myself. Jack went to stadium dedication at his old high school in Bossier, La., and will have a reunion with some of his friends. I just wasn't up to going. Even though I went back to work this week, I am in pain still from the surgery. I just am not up to the festivities planned. So, I am at home alone feeling sorry for myself, but glad to sit and do nothing. I wanted Jack to go to have an evening with the boys, without CANCER for a change! Anyways, I hope this number helps! Cheryl Quote Link to comment Share on other sites More sharing options...
Botley Posted October 18, 2003 Share Posted October 18, 2003 Dear Carleen, First of all, I echo everyone on this board who has responded! Not only is it time for a new Dr. it is time to have a Dr. on board who has the same goals and a zest for life that you two do. Obviosly, your current Dr. is pathetic and his non existent sympathy is not acceptable given the circumstances. This is Keith's life and he has every right to lead it how he wishes my no means is the battle over and sooooooooo very much of this fight has to do with attitude. This Dr. is not someone you want in your corner you need someone who's in the fight for the long haul and has winning as the outlook. Not only did he not give you two good encouraging information he succeeded in taking the air out of your sails. Move on and make some decisions about your plans write down what you want and how you will achieve this. Thinking is a great way to start getting jazzed about the future don't get stuck and do nothing! You have a wonderful support system here so take good care and seek a better Dr. who is aggressive and has a positive outlook. There is enough negativity in the world just turn on the television or pick up any newspaper. You two need a Dr. who is on your side! Good luck you are in my thoughts and prayers! Take Care, Botley Quote Link to comment Share on other sites More sharing options...
Rick Posted October 18, 2003 Share Posted October 18, 2003 I am sorry you guys are going through this. I would definitely find a new doctor. It sound like the doctor you have now is to callused and has little feelings. There are always the success stories and a doctor should always be shooting for those not the grimmest one. I would find a different doc. Quote Link to comment Share on other sites More sharing options...
SandyS Posted October 21, 2003 Share Posted October 21, 2003 Carleen - You and your Honey have touched my heart from the very beginning of your journey - your love comes thru so strong in your writing. Do NOT settle for what this doctor says! Seek a 2nd, 3rd and however many opinion! Hugs for you Carleen, and prayers for Keith, SandyS Quote Link to comment Share on other sites More sharing options...
Laurie Posted October 21, 2003 Share Posted October 21, 2003 Carleen, I agree with everyone else .... Keep up the fight and demand answers!!! Hugs, thoughts and prayers for you and Keith. Laurie Quote Link to comment Share on other sites More sharing options...
teetlee Posted October 21, 2003 Share Posted October 21, 2003 Hi Carleen, Although I don't post much, I do try to keep up with everyone. I've tried to stay informed about Keith's cancer because there seems to be a similarity to mine. I know you have had a second opinion but it took a third opinion for me to get the correct dx. My cancer never responded to chemo. Have the dr's completely ruled out a carcinoid cancer? Have you ever done any research on this type of cancer? Here is a web site where you may find some information, www.carcinoid.org Carcinoid is rare and there aren't many doctors who understand it. There are a number of carcinoid specialists in the country and I think there is a Dr.D'Orsio (spelling?) in Iowa. Good luck and I hope you find some answers. Teet Quote Link to comment Share on other sites More sharing options...
judysdaughter Posted October 21, 2003 Share Posted October 21, 2003 You always post such thoughtful replies that I just wanted to join everyone else in good thoughts and prayers for you guys. Quote Link to comment Share on other sites More sharing options...
Carleen Posted October 22, 2003 Author Share Posted October 22, 2003 Thank you everyone for all the heartfelt and warm responses. Keith and I are feeling a little better today. Keith is still a lot more "down" and scared than he was before, but I think he is starting to get some of his resolve back. We are looking into other oncologists and also going to be asking about other treatment options. I know that we were curious about trying Iressa but I haven't heard anything about it being used on Carcinoids. I also want to ask again about copper reduction therapy. Everytime I tried to ask the last onc about it, he just kept saying "we don't do that here". I also think that there is still chemo options. Keith has only had 6 rounds of chemo. The first two rounds did not show any decrease or progression. After the fourth round is when we saw slight decrease. And this last scan, after the sixth round showed stable disease as well. It just doesn't make sense to me that we shouldn't be able to get any further benefit from chemo. How many rounds have others received? Keith and I are also trying to set up an appointment with a Doctor in Iowa City, Dr Deorso (I think it's the same guy teetlee mentioned) who is suppose to be really good, but it is hard to get an appointment, it seems he is booked two months in advance. John, Thank you for the information about the trial in N. Orleans. I think that is the same procedure they are doing in Rotterdam, I will check into it. It would be wonderful if it was, because then Keith's insurance would cover at least a portion of the cost. Thank you again everyone for all the support. You've enabled me to pull my head up from out of the sand and brace myself for a fight. I still feel raw and wounded, but that is just going to make me more ornery. I am going to do everything in my power to get treatment back in swing and prove the A$$HOLE wrong. There is no way cancer is going to beat us. If God's will is to call Keith home some day from this disease (years from now), at least we will know that we did all we could, and this disease did not beat us. He'll go on to God a winner, a fighter, and a conqueror over fear and negativity. Thank you everyone Carleen Quote Link to comment Share on other sites More sharing options...
berisa Posted October 22, 2003 Share Posted October 22, 2003 Carleen, it is really good to know about your positive attitude. Keep it on! I pray for you and Keith. Quote Link to comment Share on other sites More sharing options...
Donna G Posted October 22, 2003 Share Posted October 22, 2003 Carleen, I wish I could reach over the state line and give you a hug. In the spring you said your husband had been diagnosed with SCLC, then you went to Mayo and it was changed to atypical carcinoma have you been back to Mayo? Do you think that they may have another idea? Or to the Uof M or to the U of W? In our group we have a young women who 3 yrs ago was told she had 3 months to get her affairs in order, she is no sign of disease today. Her second opinion and treatment was at Mayo. I hope you find the answer you need. Donna G Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted October 22, 2003 Share Posted October 22, 2003 Carleen, There are too many different types of chem for you to sweep them aside with one broad brush. They have different mechanisms of action targeted at different parts of different kinds of cancer cells. You could have a different chem every week for a year and still not be through, but then neither could you make sense of what was working..... I'm glad to see you have gotten your resolve back. Now you need a consult with a good doctor, who will evaluate Keith properly and be able to tell you what you have and what that means, and what he would propose to do about it. I'll send you an can of Wh##pA$$, just for emergencies. Keith should look forward to finding some answers from these new doctors, and in the meantime, Keith, there's wonderful restorative power in laughter. Go rent some videos that will have you howling. You are always in my prayers, Warmly, XOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
Guest Posted October 22, 2003 Share Posted October 22, 2003 Long-term survival of atypical bronchial carcinoids with liver metastases, treated with octreotide Pier Luigi Filosso*, Enrico Ruffini, Alberto Oliaro, Esther Papalia, Giovanni Donati, Ottavio Rena Department of Thoracic Surgery, San Giovanni Battista Hospital, University of Torino, Via Genova 3, 10126 Turin, Italy Received 14 September 2001; received in revised form 8 January 2002; accepted 16 January 2002. * Corresponding author. Tel.: +39-11-633-6635; fax: +39-11-696-0170 e-mail: pierluigifilosso@tiscalinet.it Objective: To demonstrate that liver metastases by radically resected atypical carcinoids of the lung can be effectively treated by new somatostatin analogs. Methods: Between January 1977 and December 1999, 126 patients affected by bronchial carcinoids were submitted to a radical resection of the lung. Seven of them (5.5%) presented liver metastases 27, 22, 14, 18, 16, 12 and 9 months after surgery: carcinoid syndrome (CS) was ever present. 111In–DTPA–pentetreotide scintigraphy (Octreoscan) and ultrasound guided biopsy were performed in all cases, and the presence of somatostatin receptors sst2 was demonstrated by polymerase chain reaction (PCR) method. Results: Five patients refused the proposed chemotherapy, and liver alcoholization was not feasible. Octreotide was administered at the dose of 1500 µg/daily subcutaneously. CS was controlled and also high urinary 5-hydroxyindoleacetic acid values returned to normal after a median of 7 days (range 4–10 days) of medical treatment. No important side effects were registered, and a good quality of life was observed. The patients are alive and well at 51, 36, 24, 24, 23, 19, and 16 months after the diagnosis of the metastases, respectively. In two cases ultrasounds revealed the reduction and in one case the complete resolution of the liver lesion. Conclusions: Octreotide is effective in controlling symptoms of CS of patients with liver metastases of resected atypical bronchial carcinoid. The efficacy of the drug is due to the presence of sst2 somatostatin receptors in the pathologic tissue, as demonstrated by PCR method. The positivity to Octreoscan depends on the presence of the same receptors. Octreoscan may be used in the follow-up of these neuroendocrine neoplasms of the lung. A positivity to Octreoscan is predictive for an effective therapy with octreotide. Quote Link to comment Share on other sites More sharing options...
teetlee Posted October 22, 2003 Share Posted October 22, 2003 Hi Carleen, Glad to hear that you and Keith have decided to look for another Oncologist. I take Sandostatin injections for my carcinoid and I have stable disease. I have heard of some 'noids' getting even better results like shrinkage or the tumor going away completely. There is another dr. in New Orleans. He is a surgical endocrinologist. He works with carcinoids and is very patient friendly. He is doing quite a lot of research on this type of cancer. His name and address is: Dr. Eugene Woltering Professor of Surgery and Neuroscience Chief of Surgical Endocrinology LSU Health Science Center New Orleans, La. 70112 email...ewolte@lsuhsc.edu phone...504-568-2344 Teet Quote Link to comment Share on other sites More sharing options...
john Posted October 22, 2003 Share Posted October 22, 2003 Carleen, Dr Lowell Anthony works with Dr Woltering. Both these doctors are responsible with a group of other doctors for the article below. Have you tried calling either of these Drs? Indium-111 is like Octreotide except is has a radio-isoptope attached to the octreotide. This essentially binds the radiation to the cancer cells that have the somatostatin receptors, but leaves the other cells alone. It is like a smart bomb. High-Dose Indium-111 in Pentetreotide Radiotherapy from Southern Medical Journal Discussion Somatostatin analogs such as octreotide and lanreotide have proven effective in treating the symptoms induced by excessive peptide release from neuroendocrine tumors. Both endocrine and nonendocrine tumors can be localized with radiolabeled somatostatin analogs.[14] This observation has led several investigators to propose use of radiolabeled somatostatin analogs for the targeted treatment of somatostatin receptor-expressing malignancies. Woltering et al[15] used more than 1 Ci of a 131I labeled, multiply tyrosinated, somatostatin analog for therapy of a patient with metastatic bronchoalveolar carcinoma in 1994. Krenning et al[13] initially reported the use of 111In-pentetreotide for in situ radiotherapy at a dose of 180 mCi every 3 weeks for a relatively limited number of cycles (550 mCi cumulative dose). This report showed some evidence of disease response. Others have used a lower dose (60 to 95 mCi) of this drug with no reported radiographic response.[16] However, the low incidence of acute or cumulative toxicity with 111In-pentetreotide suggests that higher short-term or cumulative doses may be tolerated well and lead to greater therapeutic benefit. Ours was the first patient treated in North America with high-dose 111In-pentetreotide. She received a cumulative dose of more than 2 Ci of 111In-pentetreotide throughout her treatment, including 360 mCi doses of the drug. She tolerated treatment well and had no dose limiting toxicity related to either acute or cumulative doses of 111In-pentetreotide. There were also no life-style altering side effects that became evident throughout the course of treatment. This approach to targeted antitumor therapy shows significant promise, but further investigation of this treatment is needed. To this end, we have undertaken a pilot trial at our institution to further evaluate the clinical response and toxicity of this drug. In this trial, 36 patients have received two or more 180 mCi doses of 111In-pentetreotide. Additionally, 6 of these patients received subsequent 360 mCi doses and one received a 540 mCi dose with no significant side effects. Preliminary results from this pilot trial are encouraging and have yielded clinical, radiographic, and biochemical responses to therapy, while toxicity appears to be minimal. Quote Link to comment Share on other sites More sharing options...
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