CancerCompass message board discussion started by BETTY C. on 8/21/2001 http://www.cancercompass.com/message-board/message/all,419,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My niece was diagnosed with cancer at the end of June 2001. Her surgery was in July, they did a complete hysterectomy and removed two tumors. They cannot seem to find the primary source of the cancer. In the meantime the cancer has spread to her liver (two tumors inside and multiple outside) and more recently a 5cm tumor on the top of her vagina. She will start chemo next week and we want to make sure we are doing the right thing. Any comments and advice would be appreciated. Thanks, Auntie BETTY C. Tue, 21 Aug 2001 00:00:00 GMT Without diagnosis of a primary cancer site, it is difficult to determine what the most effective treatment for your niece should be. I'd be happy to send you some general cancer treatment guidelines that might help you get started in your "quest for the best"; then if you do pinpoint a primary site, I can send you more specific information relating to the type of cancer your niece has. Regardless of diagnosis, your niece needs to be on a strong nutritional program to help her recover from surgery, tolerate her treatments and support her immune system. Let me know if you'd like any information about nutrition or my telephone consultation service. I'm here to help and welcome the opportunity to work with you and your niece! Please call Cancer Resource Center, 800 940-2822 and specifically request the information I mentioned above. Kim Dalzell, PhD, RD, LD Clinical/Oncology Nutritionist Cancercompass Thu, 23 Aug 2001 00:00:00 GMT In April of 2000, I started having back pain. On Dec. 11, 2000, I was diagnosed with C.U.P. (cancer of unknown primary). It is Adenocarcinoma. They found the cancer in the lining of my right lung. Starting in Jan. 2001, I rec'd. 3 mos. of Taxol & Carboplatin. No help. Starting in April I rec'd. 3 mos. of Taxotere, Gemzar, and CPT11. Signs looked good. Took off the month of July and started back on the latter of the 3 and had new CT scans and such done, but the cancer had started to spread again. So on Jan. 23 of 2002, they tried to radiate (just for the pain). They also started me on Thalomid (Thalidomide). My appt. last week (after CTs) showed no improvement. So here I am a 37 year old mother of 3 teenage boys with nowhere to turn. We have discussed clinical trials but only 3 look worthy of checking into, (then I have to be accepted) and 2 of these are phase 1 which doesn't sound promising to me. Through all the chemo, medication, radiation, etc. I have never been sick. I don't feel bad (other than the pain in my back) To begin with in Dec. 2000, they told me I only had 10 mo. to live. Then in Feb. of this year, I was told if the Thalomid didn't work, I had less than a year. I'm still here. Does anyone have any information on this type of cancer? I have good insurance, am willing to travel, have many supportive family members, and I'll do whatever it takes to beat this. Please let me know (I live in Indiana.) Cheryl L. Thu, 23 May 2002 00:00:00 GMT Cheryl, Cancer Treatment Centers of America, sounds different from all the others. They are extremely friendly and willing to work with you, to make YOU happy. They will send you a boat load of information, as well as a video and a little book. I am currently making plans to visit CTCA, MDAnderson and JHU. Have already been to Duke. Call each one up, and ask if they have anything to offer you, in your particular case. Please don't listen to the doctor's who tell you "how much time" you have left. They are all guessing, anyways, as everyone is different. I believe that most of their estimates, are based on overall averages, anyways. I have a really great list of those kinds of words, with excellent definitions, if you'd like me to email it to you. Have you found any good sites on the internet for CUP ??? Let me know if I can be of any help there, also. Anne Anne G. Tue, 20 Aug 2002 00:00:00 GMT My mother experienced back pain for over a year.-- She was diagnosed with Cancer of the unknown primary. She had 8 treatments of Taxol & Carboplatin which did not shrink the tumor in her stomach.-- I then took her to Sloan Kettering in NY and they diagnoised her with large cell neuroendorcrine tumor perhaps arising within the uterus.(Her uterus has expanded to four times its normal size)-- She is now going to try Irinotecan-- I will let you know if this works. Tony L. Mon, 17 Mar 2003 00:00:00 GMT  On 8/20/2002 Anne G. wrote:Cheryl, Cancer Treatment Centers of America, sounds different from all the others. They are extremely friendly and willing to work with you, to make YOU happy. They will send you a boat load of information, as well as a video and a little book. I am currently making plans to visit CTCA, MDAnderson and JHU. Have already been to Duke. Call each one up, and ask if they have anything to offer you, in your particular case. Please don't listen to the doctor's who tell you "how much time" you have left. They are all guessing, anyways, as everyone is different. I believe that most of their estimates, are based on overall averages, anyways. I have a really great list of those kinds of words, with excellent definitions, if you'd like me to email it to you. Have you found any good sites on the internet for CUP ??? Let me know if I can be of any help there, also. Anne Hello, Anne ...I'm new to the Boards and was interested in your message since I am now looking for the best place to go for evaluation.  How did your visits go at Johns Hopkins, MD Anderson, and Cancer Centers of America?  Are there any others that you have visited?  Thanks for any info, and I wish you the best.~Victoria    Desert Mermaid Sat, 02 Jun 2007 00:00:00 GMT  On 3/17/2003 Tony L. wrote:My mother experienced back pain for over a year.-- She was diagnosed with Cancer of the unknown primary. She had 8 treatments of Taxol & Carboplatin which did not shrink the tumor in her stomach.-- I then took her to Sloan Kettering in NY and they diagnoised her with large cell neuroendorcrine tumor perhaps arising within the uterus.(Her uterus has expanded to four times its normal size)-- She is now going to try Irinotecan-- I will let you know if this works.Hello ...I'm new to the Boards and was interested in your message since I'm also considering Sloan-Kettering.  How was your experience there?  Any information on Sloan-Kettering or other cancer centers would be greatly appreciated.Thanks, and I wish you the best.~Victoria  Desert Mermaid Sat, 02 Jun 2007 00:00:00 GMT  On 6/2/2007 Desert Mermaid wrote: On 3/17/2003 Tony L. wrote:My mother experienced back pain for over a year.-- She was diagnosed with Cancer of the unknown primary. She had 8 treatments of Taxol & Carboplatin which did not shrink the tumor in her stomach.-- I then took her to Sloan Kettering in NY and they diagnoised her with large cell neuroendorcrine tumor perhaps arising within the uterus.(Her uterus has expanded to four times its normal size)-- She is now going to try Irinotecan-- I will let you know if this works.Hello ...I'm new to the Boards and was interested in your message since I'm also considering Sloan-Kettering.  How was your experience there?  Any information on Sloan-Kettering or other cancer centers would be greatly appreciated.Thanks, and I wish you the best.~VictoriaDear Victoria,Sorry to hear about your mother.I came to this website because my brother in law has cancer. he is taking original LIMU with the highest concentration of fucoidan - it is liquid, and he is improving slowly.Wishing you Mum get better.Please send me an email and we can discuss further.If you want more informationGuadalupe    Positive2000 Sat, 02 Jun 2007 00:00:00 GMT Cheryl L-I am not sure you are still with us.  To all others with unknown primary- I have researched this extensively- and am an MD- there is one world expert in carcinoma of the unknown primary (CUP)- his name is F. Anthony Greco and is in Nashville Tenn- I have seen him- he is wonderful- everyone with this cancer should go see him for an opinion- I have had surgery, radiation, and extensive chemo- but am still here and feeling well 1 1/2 years from diagnosis.  Please go see this man if you have CUP.Keith Keith l Mon, 02 Jul 2007 00:00:00 GMT My mom was diagnosed with squamous cell carcinoma of unknown primary metastisized in her lymph nodes February of this year.  Thus far her doctors have not given her much hope but we are actually in Nashville....so I am going to look him up.  I have been looking for a doctor that specializes in this type of cancer.   Hopefuldaughter Mon, 09 Jul 2007 00:00:00 GMT  On 7/2/2007 Keith l wrote:Cheryl L-I am not sure you are still with us.  To all others with unknown primary- I have researched this extensively- and am an MD- there is one world expert in carcinoma of the unknown primary (CUP)- his name is F. Anthony Greco and is in Nashville Tenn- I have seen him- he is wonderful- everyone with this cancer should go see him for an opinion- I have had surgery, radiation, and extensive chemo- but am still here and feeling well 1 1/2 years from diagnosis.  Please go see this man if you have CUP.Keith Dear Keith,If you don't mind can I ask how you were diagnosed? What others told you? My mom was just diagnosed with poorly differentiated cancer in her liver & CUP. She has had multiple scans, tests, etc. She went in for liver surgery yesterday (Aug. 24, 2007), & the MD stopped the liver resection & closed her back up because of heterogenous nodules? The CT of the liver ca grew from 2 mo. ago. He said that it would be too much to take out that much of the liver. Oddly enough, my mom has felt great? She has been healthy otherwise & asymptomatic. He handed her case over to oncology, they are waiting for the pathology report. (The last one was from the liver bx.) They are suggesting localized chemo & then systemic chemo? What do you think? I am desperate for any helpful info!! Is there any hope? I am very happy for your recovery & truly wish you well. You inspire me & give me hope when I neede it the most. It has been a rough couple of days!! I am a nurse working on my masters, & am trying to research as much as possible. cuddy Sat, 25 Aug 2007 00:00:00 GMT Dear Keith, Rather than sending a private message, I thought that posting might help someone else.  How did you happen to find Dr. Greco? I guess I just want to be certain that he might help my daughter.  The thought of going through more tests and seeing yet another doctor might just put her over the edge.  I know that she is getting weary  of the chemo treatments, but she is very stubborn, and has put up with a lot.  Currently, she gets treatment every other week - Bevacizumab, Fluorouracil, Oxaliplatin,Leucovorin.  She comes home with an infusion pump that runs another 46 hours dispensing Fluorouracil.  Last week she could not get treated because her platelets were too low. Her last scan showed that the chemo was working on some tumors, but not all.  Some had gotten larger.  Her lungs are stable.  The usual "good news, bad news" report. Anyway, I hope that your visit with Dr. Greco goes well, and that you are doing well also  DeanNJ Sat, 01 Sep 2007 00:00:00 GMT My brother has been diagnose with cup, he has big tumors in the liver, but they can't find the primary, he lives in Argentina, and is receiving treatment over there. He first received cisplastin and gememcitabine, for 5 months, his tumos shrink about 2 cm , but now they said they have to change the treatment, so they want to give Alimta, I read Alimta is for lung cancer and mesothyeloma, doe anyone now if this drug is recomended for Cup?He feel fine, just tired because of the chemo, I just want to know if somebody  received this drug for this cancer and the results.Or if I can receive some information about other treatments.I appreciate any coments Maria casuarina Mon, 11 Aug 2008 00:00:00 GMT  On 8/21/2001 BETTY C. wrote:My niece was diagnosed with cancer at the end of June 2001. Her surgery was in July, they did a complete hysterectomy and removed two tumors. They cannot seem to find the primary source of the cancer. In the meantime the cancer has spread to her liver (two tumors inside and multiple outside) and more recently a 5cm tumor on the top of her vagina. She will start chemo next week and we want to make sure we are doing the right thing. Any comments and advice would be appreciated.Thanks, Auntie My mom was diagnosed in May of 2007 with CUP and she just passed on July 31st. Cancer of an Unknown Primary is the wors thing because you have no idea what you are dealing with. She had a full hysteectomy as well. She did 9 rounds of chemo with Carboplatinum and Gemzar. She responded well for the first 8 months but month 9 she started having some complications. Have your niece tell her Doctor to send a sample of her tumor to Oncotech for drug resistance testing. That will determine which chemo drug will work best for her. Also, on a personal note I think chemo does more harm than good. ddm612 Wed, 13 Aug 2008 00:00:00 GMT My stepdad has just been dxd with squamous cell carcinoma in lymph nodes in neck. (Probably both sides- didn't get enough tissue to make sure both sides) He is awaiting results from PET. Been declining for some time; back pain, px with bowels, losing weight, loss of energy. We are in the Middle TN area. Suggestions are greatly appreciated. glendab Mon, 25 Aug 2008 00:00:00 GMT