CancerCompass message board discussion started by kladvocate on 9/19/2007 http://www.cancercompass.com/message-board/message/all,16291,0.htm Thu, 28 Aug 2008 00:00:00 GMT Thu, 28 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have become my father in law's patient advocate and have read almost all clinical trials for melanoma where mucosal melanoma isn't on the  'exclusion' list! He is stage lV with mets in the lungs and liver and a primary location recurrence in the rectum. It's hard to find the right treatment when different doctor's have different approaches.  One specializes in chemo, another in immunology etc. So I've researched both. I am sharing this information in the hope that anyone out there dealing with the disease, caregiver, advocate or patient might reach out and post their insights in how they're dealing with it. Right now, there is a Doctor out of Dana Farber in Boston (Dr. Hodi) who has taken a special interest in Mucosal Melanoma. I don't know of anyone else specializing here in the u.s. as it's such a rare disease.We are on the West Coast (L.A.) and traveled to Boston to see Dr. Hodi. After a moment where my father in law almost became excluded, he is now 1 week in to his first cycle of a phase 1 clinical trial using sutent in treating mucosal melanoma. Right now Dr. Hodi is the prinicple investigator at Dana Farber. I will post results of his next set of scans.  He is on a 50mg dose. We also managed to get him on a vaccination trial at the Hoag Center in Newport Beach (Califonia) under the care of Dr. Dillman. Their vaccination program is patient specific. Unfortunately they need a mass to grow a cell line and develop a vaccine.  This can take time and also has not been 'sold' as a cure but as a therapy to stop additional spread.  We found a mass (ironically pleased to see one that was so easily resected). But the vaccine can take up to 11 months to grow and that's only if they can successfully grow a pure cell line. So while that's going on we need a result with sutent. We did look at Gleevec but Sutent has the potential to knock out more cancer and doesn't necessarily mean you need the 'kit' mutation.But I'm already trying to find a b plan, c plan... etc. Our endgame is to be able to get the vaccination, until then we need something. Please share any ideas. What tried, what didn't.FYI - most patient/tumor specific vaccination programs are not being funded by big pharmaceutical.My take so far... When selecting an oncologist, find someone who knows your specific cancer and hopefully find a researcher whose work is funded by donations.  That's not to say that a regular oncologist is bad, it's just a simple fact. Oncologists travel to conferences and select which trials they are interested in. They won't tell you of other options. It's up to us to find them and research them.Until the Doctor's have worked out a cure, they are making educated guesses about treatment options which is why you see drugs like sutent being used in all kinds of different cancers, even melanoma brain mets. Thanks and good luck to everyone dealing with this disease.   kladvocate Wed, 19 Sep 2007 00:00:00 GMT Good Evening, Sorry to hear about your FIL, I pray that all goes well with his trial. My husband was diagnosed with Rectal Melanoma. Recently we discovered  he has mets to the liver, bone, etc. He just started a clinical trial with Dacarbizine and Sinitinib at the Moffitt Cancer Center in Tampa, Florida. I pray that all patients will be delivered from this dreadful disease. Best of everything to your family.  Be blessed and stay encouragedGail W. 1anxiouswife Thu, 11 Oct 2007 00:00:00 GMT I'm very interested in your treatment decisions. In 2/07 I had surgery for, supposedly, acute sinusitis in my right maxillary sinus. The biopsy came back positive for malignant melanoma. Another surgery took wider margins and tested negative for further cancer. PET/CT showed no other cancer activity in my body at that time. Six weeks of radiation ending in early July was supposed to kill off any remaining cancer cells.Fast forward to Sept. 28. A follow-up PET scan now indicates probable metastasis to the bones in my right shoulder and left hip. I see a chemotherapy oncologist at the Univ. of Kansas Med Center this Tuesday to review the scans and determine a plan of action. Regardless of what he says I'm looking to get a second opinion. Who is doing the cutting edge research in this field? I've looked at the big names (MD Anderson, Sloan-Kettering, Johns Hopkins, Mayo). They're all running clinical trials, but at this point I just want another expert to confirm (or refute) whatever I'm told on Tuesday. I've been reading quite a bit and am not encouraged by what I see, especially for metastasis in the bones. I'm definitely interested in knowing what has/has not worked for others.Thanks,John  AnglicanOrganistJohn Sat, 13 Oct 2007 00:00:00 GMT My mother, age 67, was diagnosed with mucosal melanoma in late February, primary in the rectum and mets to the liver.  She began experimental treatment with AZD6244 at Mt. Sinai Miami Beach under Dr. Jose Lutzky.  She tolerated it well but it was determined that it was not doing anything and the disease was progressing.  She went to Memorial Sloan Kettering in NYC and was put on Gleevec in late June.  Unfortunately, she passed away on July 10th.  Your doctor, Dr. Hodi, is also well known in this field. Good luck to you. Stefhef Thu, 18 Oct 2007 00:00:00 GMT My sister has the exact same diagnosis and is in a Stage III trial at Strong Hospital in Rochester.  It is a combination of carboplatin and taxol, with sorafenib as the experimental drug.  We don't know if she has that or the placebo.  She just had her second treatment on Friday, and will be scanned on Nov. 7th.  I would be very interested in hearing more on your father in laws results, treatment, etc.  How is the sutent being tolerated? Cathbean Mon, 22 Oct 2007 00:00:00 GMT UPDATE:My father in law took 3 cycles of Sutent. And indeed, Sutent stopped the cancer metabolising. Unfortunately my father in law had serious pain from a spinal problem. He was taking a lot of oral meds. In particular, Oxycotin and Oxycodene. These meds made him mentally cloudy. I finally found a wonderful Pain Management specialist, Dr. Reicheimer at Norris Cancer Center at USC. He came up with an approach to manage my father in laws pain using very precise spinal nerve blocks. Unfortunately, as a result of all the meds he was taking, he developed severe acid reflux. Sutent compounded this. He stopped eating and so the acid continually built up. He was admitted to the ER before christmas, he passed away from a perfroated bowel on January 1st.In my experience I would recommend finding a pain management specialist and try to remove as many oral medications as you can. Had I found this doctor sooner, I feel my father in law would have had a better chance and would have finished the Sutent trial with positive results. He had two years of back pain and I feel this hammered his body and spirit.Take care of the pain or at least find someone who can help you manage it.Dr. Hodi and his team, including Angie Tsiarus and Suzanne McCrae were simply wonderful and as I was dealing with my father in law through the holiday season, they were constantly available no matter what time I needed them.  kladvocate Mon, 07 Jan 2008 00:00:00 GMT  On 9/19/2007 kladvocate wrote:I have become my father in law's patient advocate andhave read almost all clinical trials for melanoma where mucosalmelanoma isn't on the  'exclusion' list! He is stage lV with mets in the lungs and liver and a primary location recurrence in the rectum. It's hard to find the right treatment when different doctor'shave different approaches.  One specializes in chemo, another inimmunology etc. So I've researched both. I am sharing this informationin the hope that anyone out there dealing with the disease, caregiver,advocate or patient might reach out and post their insights in howthey're dealing with it.Right now, there is a Doctor out of Dana Farber in Boston (Dr.Hodi) who has taken a special interest in Mucosal Melanoma. I don'tknow of anyone else specializing here in the u.s. as it's such a raredisease.We are on the West Coast (L.A.) and traveled to Bostonto see Dr. Hodi. After a moment where my father in law almost becameexcluded, he is now 1 week in to his first cycle of a phase 1 clinicaltrial using sutent in treating mucosal melanoma. Right now Dr. Hodi is the prinicple investigator at Dana Farber. I will post results of his next setof scans.  He is on a 50mg dose. We also managed to get him on avaccination trial at the Hoag Center in Newport Beach (Califonia) under the care of Dr. Dillman.Their vaccination program is patient specific. Unfortunately they needa mass to grow a cell line and develop a vaccine.  This can take timeand also has not been 'sold' as a cure but as a therapy to stopadditional spread.  We found a mass (ironically pleased to see one that was so easily resected). But the vaccine can take up to 11 months to grow and that's only if they can successfully grow a pure cell line. So while that's going on we need a result with sutent. We did lookat Gleevec but Sutent has the potential to knock out more cancer anddoesn't necessarily mean you need the 'kit' mutation.But I'm already trying to find a b plan, c plan... etc. Our endgame is to be able to get the vaccination, until then we need something. Please share any ideas. What tried, what didn't.FYI - most patient/tumor specific vaccination programs are not being funded by big pharmaceutical.Mytake so far... When selecting an oncologist, find someone who knowsyour specific cancer and hopefully find a researcher whose work isfunded by donations.  That's not to say that a regular oncologist isbad, it's just a simple fact. Oncologists travel to conferences andselect which trials they are interested in. They won't tell you ofother options. It's up to us to find them and research them.Untilthe Doctor's have worked out a cure, they are making educated guessesabout treatment options which is why you see drugs like sutent beingused in all kinds of different cancers, even melanoma brain mets.Thanks and good luck to everyone dealing with this disease. Hi  --i have a close friend here in los angeles with rectal melanomaand i just read about your father-in-law's experience with dr.hodi's trial in boston.    i am interested in finding out more about the vaccination program in newport.   do you have someone torecommend to speak with there?   i realize the time element iscrucial and, with such a dire prognosis, might be irrelevant.   buti'm also of the "leave no stone unturned" approach. thanks so much  -- randi johnson     arejay Tue, 15 Jan 2008 00:00:00 GMT I am oral mucosal melanoma patient and I deeply appreciate you sharing these very useful information with us. Sorry about your father-in-law. I want to wish you good luck and God bless! BlueHills Tue, 11 Mar 2008 00:00:00 GMT does anyone know how the Vaccination Trial is going? Gunther Tue, 27 May 2008 00:00:00 GMT My aunt (at age 60) was diagnosed with vaginal mucosal melanoma in Dec, 2005 at which time the mass was removed.  She then had an additonal surgery to remove more tissue around the original tumor site.  She began taking Interferon (5 days/week for 4 weeks - followed with 3 days/week for 8 months).  In October, 2006 the disease had metasized to the liver.  She was put on Temador from Jan 07 to Apr 07.  The next scan in Apr 07 showed the disease had spread to her lungs and the original tumors had increased.  She began taking Taxol and Avastin in May 07 and the tumors were decreasing.  She was on Taxol and Avastin from May 07 to Apr 08.  The April 08 scan showed the Taxol and Avastin was not decreasing the tumors anymore.  She was then put on Carboplatin and had 2 treatments.  The Carboplatin caused a severe decline in her platelets, resulting in 2-3 platelet transfusions.  Her WBC and hemoglobin suffered as well.  She missed treatments due to the side effects.  Her last scan was June 26, 2008 and her tumors had increased.  She has now been prescribed Gleevec, but the doctor doesn't seem to think it will work.  I noticed your message was dated 09/19/07, but we just recently found this site.  Please reply with any info.  I hope your father in-law has continued to fight and is winning.God bless you!On 9/19/2007 kladvocate wrote:I have become my father in law's patient advocate and have read almost all clinical trials for melanoma where mucosal melanoma isn't on the  'exclusion' list! He is stage lV with mets in the lungs and liver and a primary location recurrence in the rectum. It's hard to find the right treatment when different doctor's have different approaches.  One specializes in chemo, another in immunology etc. So I've researched both. I am sharing this information in the hope that anyone out there dealing with the disease, caregiver, advocate or patient might reach out and post their insights in how they're dealing with it. Right now, there is a Doctor out of Dana Farber in Boston (Dr. Hodi) who has taken a special interest in Mucosal Melanoma. I don't know of anyone else specializing here in the u.s. as it's such a rare disease.We are on the West Coast (L.A.) and traveled to Boston to see Dr. Hodi. After a moment where my father in law almost became excluded, he is now 1 week in to his first cycle of a phase 1 clinical trial using sutent in treating mucosal melanoma. Right now Dr. Hodi is the prinicple investigator at Dana Farber. I will post results of his next set of scans.  He is on a 50mg dose. We also managed to get him on a vaccination trial at the Hoag Center in Newport Beach (Califonia) under the care of Dr. Dillman. Their vaccination program is patient specific. Unfortunately they need a mass to grow a cell line and develop a vaccine.  This can take time and also has not been 'sold' as a cure but as a therapy to stop additional spread.  We found a mass (ironically pleased to see one that was so easily resected). But the vaccine can take up to 11 months to grow and that's only if they can successfully grow a pure cell line. So while that's going on we need a result with sutent. We did look at Gleevec but Sutent has the potential to knock out more cancer and doesn't necessarily mean you need the 'kit' mutation.But I'm already trying to find a b plan, c plan... etc. Our endgame is to be able to get the vaccination, until then we need something. Please share any ideas. What tried, what didn't.FYI - most patient/tumor specific vaccination programs are not being funded by big pharmaceutical.My take so far... When selecting an oncologist, find someone who knows your specific cancer and hopefully find a researcher whose work is funded by donations.  That's not to say that a regular oncologist is bad, it's just a simple fact. Oncologists travel to conferences and select which trials they are interested in. They won't tell you of other options. It's up to us to find them and research them.Until the Doctor's have worked out a cure, they are making educated guesses about treatment options which is why you see drugs like sutent being used in all kinds of different cancers, even melanoma brain mets.Thanks and good luck to everyone dealing with this disease.   RM-Faith Mon, 30 Jun 2008 00:00:00 GMT