CancerCompass message board discussion started by Angieells on 1/23/2006 http://www.cancercompass.com/message-board/message/all,4209,0.htm Sat, 11 Oct 2008 00:00:00 GMT Sat, 11 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi. My name is Angie and I was just wondering what some of the symptoms you may have had with granulosa cell tumors. I had this 9 years ago and have been fine since but recently they found a lesion on my liver that was being watched for about a year (with no changes) and just last week found a lesion on my spleen. So far my doctor is doing the Inhibin levels. I just want to see if someone else has ever had the same thing. Thanks. Angieells Mon, 23 Jan 2006 00:00:00 GMT I am currently in my 4th recurrence of granulosa cell tumors. The first was 19 yrs ago. I went 12 yrs w/o evidence of cancer, then a large tumor on the pancreas. Treated with extensive surgery and chemo. Five yrs later, a tumor on the bowel and several other smaller spots showed up on a CT/PET scan. Treated with bowel resection and debulking. Last week, several new tumors presented in the peritoneal area, 3 are on the liver. Although granulosa cell typically grows at a slow rate, this one has been coming back sooner with each occurence. It is not a common ovarian cancer and being treated by a gynecologic oncologist is essential, hopefully one with experience with stromal tumors. Treatment is tricky. Chemo is effective with about half of the women. Surgery has been done on me everytime it presented. I'm currently on a hormonal therapy of Tamoxifen & Progestrone but we're not sure it's working since the tumors just reappeared. The first time, I had all the symptoms of ovarian cancer, I just didn't know that's what they were indicating. The second, the tumor was quite large and causing pain. There were no symptoms during the 3rd or 4th occurences - found in routine CT surveilance.I hope this info is useful. Annette Annette1 Mon, 13 Feb 2006 00:00:00 GMT Hi Annette. Thank you for the information. I am sorry to hear what you are going through. I will keep you in my prayers. The information really helped me because it didn't seem like the cancer reoccured after that long. I am going through routine MRI's (about 4 a year at this point). The leison on my spleen did shrink in size a bit so they aren't really worried about that one as much. Again, I really appreciate you information and will keep you in my thoughts and prayers. Angie Angieells Tue, 14 Feb 2006 00:00:00 GMT Angie- I have good news for you. I entered a clinical trial in March because of tumors on the liver. This is a Phase 1 Clinical Trial of a new drug called APOMAB, for monoclonal antibodies. I'm in the 2nd group of humans to get the drug. I had low expectations of good results because this is truly experimental, has only been proved in lab dishes and animals. GOOD NEWS: My tumors have shrunk. Of 7 that I presented with 3 months ago, 5 are no longer detectable on the CT and the remaining 2 are reduced. The local oncologists are now referring more granulosa women to the study as a result of my progress. Here's the info in case this is an option for you: Rx Co: Genentec Drug: APOMAB Side Effects: Minor flu-like symptoms (headaches, achy) My dose is 4mg. New patients (as I understand) will receive higher doses. They are testing toxicity. This trial is being conducted in 4 cities across the country. Mine is in Scottsdale AZ. Your oncologist should be able to find info on it, but if not, let me know. I hope this is helpful. Good luck and let me know if you need more inf. Annette Annette1 Mon, 15 May 2006 00:00:00 GMT Annette. That is wonderful news. Thanks for the information. I will keep it on file in case I ever need it. So far so good for me. I had two leisons earlier this year but both are shrinking so they are not sure what they are. I don't have to see anyone until January so that is a nice break. Please keep me posted on your positive treatment. Angieells Mon, 15 May 2006 00:00:00 GMT Kia Ora, I am excited to hear of your response with APOMAB! This is exactly the type of news we want to capture and make available to all GCT survivors through our foundation, GCTF New Zealand (www.gctf.org.nz). We have announced a "world first", a database of medical histories specific to GCT that will serve as a very effective resource in the future for women who have questions about GCT recurrence, treatment options, side effects, etc. As a reader of this discussion group you realise that often the best information about how to deal with GCT comes from other women who are dealing with it themselves since so few doctors have an extensive knowledge of the disease. We have had a good response, so far, from some of those who have already seen the newsletter, but we need the support of everyone like you. Our hope is that our fellow GCT survivors will contribute their medical history and that researchers will use that data in addition to their other tests as they focus on development of some targeted therapeutics. WE DO NOT ASK FOR ANY PERSONAL INFORMATION, SIMPLY MEDICAL HISTORY DATA. Once we have a reasonable number of submissions we will have a tool available from our website that you will personally be able query the database to answer questions that you may have. I thank you immensely for your help with this huge project. This will benefit all of us. Sofi Managing Director Granulosa Cell Tumour Foundation NZ www.gctf.org.nz Sofi in nz Sat, 12 Aug 2006 00:00:00 GMT I am happy to report that I finished my trial with even better results than we could have hoped for. My PET at the end of treatment showed no metabolic activity in the full body scan. Although there are appearances of tumors, they are behaving as though necrotic. No one knows why I had such a positive response nor how long this will last, but for the first time in 19 yrs, we have evidence of having changed the course of the disease. My clinical study oncologists and my gyn/onc agree that I should let my body rest from all the drugs and enjoy this holiday! Of course, we hope that any recurrence is long in coming, but we also are optimistic that when this drug is available commercially, there will be a roadmap to treatment. I am happy to provide any information that might be useful. I actually published a book about my illness, so confidentiality is no longer a concern for me. Annette Leal Mattern, author, Outside The Lines of love, life, and cancer. Annette1 Sat, 12 Aug 2006 00:00:00 GMT Do you know where the other clinical trials are being held? This is my first recurrence and I have two tumors on my liver and several others. I just completed a course of BEP and my gyne said it didn't shrink them enough to remove them. Have you ever had Taxol Carbo? That was what he recommneded as the next step. Hollyd Sun, 10 Sep 2006 00:00:00 GMT I don't know where the other trials are but I will be at the clinic on Wed for post-treatment follow up. I also had a follow up PET (July), CT (Aug), and X-Ray (Sept)- all show "no signs of metabolic activity of carcinoma in the full body". I still can't believe it. I just spoke at a panel on clinical trials in Washington DC and the other speaker, Michael Seiden, is head of ovarian trials at Harvard Med. He was very excited about my report because trials often get a bad rap from some physicians. His point to the audience was that every woman with this disease needs to know what her options are - not that she SHOULD enter a trial but that she should at least know that they are available to her. I took BEP 6 yrs ago and later took tamoxifin/progesterone combo. When my tumors came back anyway, my oncologist felt that traditional chemical treatment was not helping me because GCT is a slow growing cancer and the traditional chemo is designed to attack fast growing cells. He believes that the GCT cells just stay below the chemo radar. He referred me to a clinic that does nothing but clinical trials. He was very careful not to recommend a certain trial because he was not up to speed on them all - there are literally thousands. I will check into the other locations for APOMAB. You may also want to enquire of Genentech or find out where in your area they conduct clinical trials. Some are research clinics associated with universities (your oncologist should know). Annette Annette1 Mon, 11 Sep 2006 00:00:00 GMT Thank you for the information. I met with my doctor today and he said that there is not a clinical trial for Apomab locally at this time. He suggested that I try more conventional methods since this is my first recurrence, so I am having two more BEP treatments. Congratulations on your test results they sound very promising. Hollyd Mon, 11 Sep 2006 00:00:00 GMT  On 8/12/2006 Annette1 wrote:I am happy to report that I finished my trial with even better results than we could have hoped for. My PET at the end of treatment showed no metabolic activity in the full body scan. Although there are appearances of tumors, they are behaving as though necrotic. No one knows why I had such a positive response nor how long this will last, but for the first time in 19 yrs, we have evidence of having changed the course of the disease. My clinical study oncologists and my gyn/onc agree that I should let my body rest from all the drugs and enjoy this holiday! Of course, we hope that any recurrence is long in coming, but we also are optimistic that when this drug is available commercially, there will be a roadmap to treatment. I am happy to provide any information that might be useful. I actually published a book about my illness, so confidentiality is no longer a concern for me. Annette Leal Mattern, author, Outside The Lines of love, life, and cancer.Hi Annette: On Jan 29th I had surgery to remove 4 GCtumours in my abddomen. This is my 2nd bout with granulosa, the first being about 4.5 years ago. I was pleased to read that you are having success with this trial treatment. My oncologist and I have decided not to pursue chemo because of the low possibility of its effectiveness in preventing recurrence. At this point in time, I am looking at natural ways to boost my immune system in hopes of increasing my resistance to future recurrences. However, I would really like to remain optimistic that an effective treatment will be available to all of us with GCT in the future.I would like to share this trial information with my Oncologist in the hopes that he can pursue further information for those of us with GCT here in eastern Canada. Is there a doctor/researcher's name that I can pass on to him? Or a link to the trial information? Anything you can provide would be very useful.I pray that your treatment keeps your cancer at bay. You go, girl!!Brenda  Gct2-brenda Sun, 25 Feb 2007 00:00:00 GMT Hi Annette, I read about your participation in the clinical trial of APOMAB, can you tell me/us more about this.....which clinic administered the trial, the contact person, your results at this point? Thank you so much! Mariah Mariah Mon, 02 Apr 2007 00:00:00 GMT Dear Annette I am writing this mail on behalf of a relative, Mr. Satish Sehgal, who has mesenchymal chondrosarcoma, which started with a tumour in his arm (2 surgeries). He went through three cycles of chemo (Adriamycin and Ifosfamide) starting March '07, but it was not successful in controlling the cancer, and bone scans revealed extensive mets. Also he has some lung mets. His doctor (he was treated in New Delhi, India, and) has suggested the drug Apomab and has suggested that Mr. Sehgal participate in a clinical trial for this drug. I understand that the drug is in the Phase 2 trial and Genetec is the bio tech company that is sponsoring the trial. I found your name in a number of support groups and understand that you have benefited from this drug. Could you please let me know of possible (a) your treatment and (b) if there are any trials that you know going on for this drug and (c) anyone else that you know who has benefited from this drug.  The family is almost at their wits’ end and are very anxious to get whatever information they can about this drug and its efficacy and we would really be grateful for any information that you may be able to give. Thanks in advance.  Sincerely, Monideepa  Monideepa Tarafdar Toledo, OH Deepa Sat, 08 Sep 2007 00:00:00 GMT  On 5/15/2006 Annette1 wrote:Angie- I have good news for you. I entered a clinical trial in March because of tumors on the liver. This is a Phase 1 Clinical Trial of a new drug called APOMAB, for monoclonal antibodies. I'm in the 2nd group of humans to get the drug. I had low expectations of good results because this is truly experimental, has only been proved in lab dishes and animals. GOOD NEWS: My tumors have shrunk. Of 7 that I presented with 3 months ago, 5 are no longer detectable on the CT and the remaining 2 are reduced. The local oncologists are now referring more granulosa women to the study as a result of my progress. Here's the info in case this is an option for you: Rx Co: Genentec Drug: APOMAB Side Effects: Minor flu-like symptoms (headaches, achy) My dose is 4mg. New patients (as I understand) will receive higher doses. They are testing toxicity. This trial is being conducted in 4 cities across the country. Mine is in Scottsdale AZ. Your oncologist should be able to find info on it, but if not, let me know. I hope this is helpful. Good luck and let me know if you need more inf. AnnetteI've had four granulosa cell surgeries and now within 3 years, I have a new CT scan which show large tumors including one on my liver. My onocologist is very interested in your trial, but in order for us to check with your oncologist we need name, the drug information my doctor requested was the FDA, IND#. I would appreciate any additional information so we could see what phase this testing is in and the cities. Perhaps my outcome could be successful too. Please help I'm desperate. Thank you, my email address is --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- if you contact me ASAP. carolyn Carolyn49 Thu, 10 Jan 2008 00:00:00 GMT Inhibin isn't always an accurate measure of GCT reoccurance. The best treatment and diagnostic procedure is surgery, says my doctor. GCT is also famous for recurring years and years after it is first diagnosed. So if the tumors are in places they can reach, if it were me I'd have them removed and see if they are GCT. It is treatment and diagnosis all in one. Best wishes, Rachel  RachelaK Thu, 31 Jul 2008 00:00:00 GMT On 7/31/2008 RachelaK wrote:Inhibin isn't always an accurate measure of GCT reoccurance. The best treatment and diagnostic procedure is surgery, says my doctor. GCT is also famous for recurring years and years after it is first diagnosed. So if the tumors are in places they can reach, if it were me I'd have them removed and see if they are GCT. It is treatment and diagnosis all in one. Best wishes, Rachel  Hi Rachel, I agree, you don't want to put all of your focus on one single monitoring technique but I think it's important to point out two things. 1) Inhibin B is quite a reliable marker for granulosa cell growth. Studies show about a 90% correlation between rising Inhibin B levels and GCT recurrence[1]. 2) Inhibin B is different from Inhibin A, which is far less useful[1]. For the last six years our doctor had been ordering "Inhibin" tests from the lab. Since the lab didn't know which he meant, they just defaulted to Inhibin A. It's no wonder that the Inhibin A tests didn't catch the recurrence which was far along by the time it showed up on a CT. Make sure your doctor is ordering Inhibin B tests. [1] http://jcem.endojournals.org/cgi/content/abstract/83/3/1029? Best, John johnsc Fri, 08 Aug 2008 00:00:00 GMT  On 8/8/2008 johnsc wrote: On 7/31/2008 RachelaK wrote:Inhibin isn't always an accurate measure of GCT reoccurance. The best treatment and diagnostic procedure is surgery, says my doctor. GCT is also famous for recurring years and years after it is first diagnosed. So if the tumors are in places they can reach, if it were me I'd have them removed and see if they are GCT. It is treatment and diagnosis all in one. Best wishes, Rachel  Hi Rachel,I agree, you don't want to put all of your focus on one single monitoring technique but I think it's important to point out two things.1) Inhibin B is quite a reliable marker for granulosa cell growth. Studies show about a 90% correlation between rising Inhibin B levels and GCT recurrence[1].2) Inhibin B is different from Inhibin A, which is far less useful[1]. For the last six years our doctor had been ordering "Inhibin" tests from the lab. Since the lab didn't know which he meant, they just defaulted to Inhibin A. It's no wonder that the Inhibin A tests didn't catch the recurrence which was far along by the time it showed up on a CT. Make sure your doctor is ordering Inhibin B tests.[1] http://jcem.endojournals.org/cgi/content/abstract/83/3/1029? Best,John My doctor was measuring Inhibin B. I recently asked him. I returned home from having 8 large tumors removed to get a phone message from my GYN ONC not to worry because my Inhibin B was so low.... Just to let people know these markers are not always reliable! RachelaK Fri, 12 Sep 2008 00:00:00 GMT I have observed that progesterone seems to make it come back more rapidly... Lupron is one "better" hormonal drug but it makes most people very tearful. I am currently on Arimidex, another hormone suppressor to keep the growth rate down. I would have both lesions removed if it were me because these look like cauliflower and growth doesn't always show up so clearly.... surgery is always the best treatment......Rachel K. RachelaK Fri, 12 Sep 2008 00:00:00 GMT On 9/12/2008 RachelaK wrote: On 8/8/2008 johnsc wrote: On 7/31/2008 RachelaK wrote:Inhibin isn't always an accurate measure of GCT reoccurance. The best treatment and diagnostic procedure is surgery, says my doctor. GCT is also famous for recurring years and years after it is first diagnosed. So if the tumors are in places they can reach, if it were me I'd have them removed and see if they are GCT. It is treatment and diagnosis all in one. Best wishes, Rachel  Hi Rachel,I agree, you don't want to put all of your focus on one single monitoring technique but I think it's important to point out two things.1) Inhibin B is quite a reliable marker for granulosa cell growth. Studies show about a 90% correlation between rising Inhibin B levels and GCT recurrence[1].2) Inhibin B is different from Inhibin A, which is far less useful[1]. For the last six years our doctor had been ordering "Inhibin" tests from the lab. Since the lab didn't know which he meant, they just defaulted to Inhibin A. It's no wonder that the Inhibin A tests didn't catch the recurrence which was far along by the time it showed up on a CT. Make sure your doctor is ordering Inhibin B tests.[1] http://jcem.endojournals.org/cgi/content/abstract/83/3/1029? " target="_blank" rel="nofollow">http://jcem.endojournals.org/cgi/content/abstract/83/3/1029? " target="_blank" rel="nofollow">http://jcem.endojournals.org/cgi/content/abstract/83/3/1029? " target="_blank" rel="nofollow">http://jcem.endojournals.org/cgi/content/abstract/83/3/1029? Best,John My doctor was measuring Inhibin B. I recently asked him. I returned home from having 8 large tumors removed to get a phone message from my GYN ONC not to worry because my Inhibin B was so low.... Just to let people know these markers are not always reliable! Interesting! Thanks for sharing. I wonder if there are some factors about the disease that will make it more/less likely to produce Inhibin B. Do you know if the tumors that were removed were hormonally receptive? johnsc Fri, 12 Sep 2008 00:00:00 GMT