temodar and melanoma

has anyone had any results with temodar? Do you take only it or in conjunction with another drug? I have just started and am so nervous! I was diagnosed with melanoma in 2004 and it has now spread and there are multiple tumors in my lungs!

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my dad, dx of ED-sclc, mets to liver, was in a clinical trial using just temador. We were told it is successful with melanomas and another cancer (escapes me right now).
wishing you success!
maria

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I was put on Temodar in September of 1999 due metastazied melanoma in the brain (8 tumors). The highest dose I took was 160mg, but always had to stop because of low WBC I finally was put on Temodar 100mg seven days on seven days off since the end of 2001. This will be my 10th year since being diagnosed with the brain tumors and I have been NED since, other than 8/2000 ( a very, very small tumor was found and had gamma knife). I am still on the Temodar but the oncologist is considering taking me off very soon. I am not sure how I feel about going off, but I know eventually I should. I have had little or no problems with the Temodar other than recently nausea and had to take the Zofran at different times. I take one Zofran about 1/2 hour before the Temodar at night and then one about 4:00am which seems to help the nausea. The only other drug I take is Fragmin (similar to Heprin) which my oncologist thinks help detire (sp) the cancer. I also take a Neupogen injection every other week to bring the WBC back up. Something is working!!! I wish you good luck!!!! Fight hard!!!!

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Thank you! That is reassuring to know! I am praying for the best!

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My husband Jim was diagnosed with melanoma in January 2007, after removal of tumor and clean sentinel node biopsy he was staged as 2b. December 2008 his quarterly ct scan showed very small tumors in his right lung and 2 enlarged axillary lymph nodes. The enlarged nodes were removed along with some extras and only the two were metastic. His VA physician recommended IL-2, after consulting with a private oncologist he did have 2 - 5 day treatments of IL-2, results were mixed with 2 of the 4 lung tumors gone and 2 others shrank considerably, but, he also had 2 new enlarged lymph nodes in his chest, and now the VA is recommending Temodar. We are wondering if anyone has had more than the prescribed 2-5day treatments of IL-2 and what the recommended protocol is for IL-2. The VA oncologist seems to think that since the results were mixed we should move on to standard chemo but I feel like we haven't given the IL-2 enough time to get any substantial data. We will be seeing our oncologist locally for a second opinion. Any info is greatly appreciated. For now Jim is very healthy, except for the cancer. Thanks Myrna

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Taking Temodar 300 MG 5 days then off the rest the month...each month. Been on it since July 2009 and as of today January 18 it has not spread. Last PET at the end of Nov showed no spread and slight shrinkage. The shrinkage may have come from the radiation in July ( 10 days of radiation)...I was told Temodar keeps it from spreading for "awhile"...so I don't know. I take it at home and not in a clinical setting...

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i have had temodar before with il 2 cispltin it did not work .i recently had 15 tumors in lungs,and went on ipiluminab trial and all have dissapeared in lungs but the cancer moved to brain seven tumors but had to quit ipiluminab due to cancer in brain but im starting temodar today hopefully it works ,if anbody had success with this please reply or if you have any questions about ipiluminab its almost fda approved for melanoma

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Yes I am wondering about IPI...I was going to look for a trial with it but thought I would first give immnotherapy a try as I think this is my best hope. I will be doing" Phase I/II Pilot Study of Cellular Adoptive Immunotherapy With Autologous CD8+ Antigen-Specific T-Cell Clones in Combination With Low-Dose Aldesleukin and Denileukin Diftitox in Patients With Metastatic Melanoma". I heard Ipi shows promise. Can you tell me more about it...I still have one mass as of Nov but it is in a place were it can't be removed. I may spend forever in clinical trials as I won't give in to this...I will win and it will lose!

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ipiluminab is immunitherapy ,it was very hard to get into trial olny 80 people in united states,worked very well for me where nothing else has worked.it is very close to being fda approved,the treatment had little to no sid affects,if there is a trial open somewhere i would pursue it,i had fifteen tumors in lungs and a good size tomor in abdomin,all tumors are gone in lungs and one in abdomin is almost gone,but i had to go off treatment becaue it moved to my brain.my doctor is david minor at sanfrancisco oncology if you need more information,hope you get well thaks mike

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Did they say if ipi had anything to do with the spread to your brain? How long were you on it? I have heard it is working well but that the supply is short and the demand is large. I want to try this trial first as they have actually gotten people into remission just with T cells without chemo. Since melanoma is related to the immune system it makes sense. If it doesn't work well then Ipi may be ready and more available by then. I was told Temodar is what Kennedy was on, but he has other issues as well. Temodar doesn't bother me much, but I have to take the Zofran and Compazine at least 6 hours before I take it or else I will throw up. I get tired and don't want to do much. My blood counts don't drop bad. My platelets are the only thing that goes down below "normal", but only down to about 130 or 140. I hope you will do well this time on Temodar...take the Zofran and Compazine and you shouldn't get too sick. I didn't eat 2 hours before and didn't eat until 2 hours after. My pharmacist said not to recline or go to bed for at least 2 hours after I take it. That made a big difference

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Informative website on Melanoma and Skin Cancer

http://cancerfocus.org/forum/forumdisplay.php?f=9

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