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March 18, 2013 at 4:05 pm #21114
I am advanced stage 4 and have had 2 surgeries, 3 chemos (Ipi,Zelboraf, Temodar) and radiation. Multiple tumors primarily in my abdomen (some are very large) – my abdomen is quite large because of these huge tumors. I also have edema pretty bad (legs, feet, abdomen). I’ve been presented with two options:
1) Carbo Taxol (Carboplatin and Paclitaxel) chemo infusions (combination drug therapy)
2) Phase 1 Trial – Study of oral LKG974 for patients with malignancies depending on Wnt ligands (Novartis) at Karmanos Cancer Center Detroit, Michigan
I’ve done some research on Carbo Taxol and have some sense of its response rate, but the Wnt Trial is very new and I cannot find any info on this, beyond the consent form.
Has anybody had any experience with either of these drugs and could share an opinion or some experience. I know there are many very knowledgeable people on this forum and any thoughts or comments would be most appreciated. Is a trial always better than a standard treatment? I’m unsure which way to go.
Windsor, OntarioMarch 18, 2013 at 4:24 pm #59691
Can’t find much on this drug. Carbo-taxol doesn’t have a great response rate with melanoma. Are you BRAF positive? Have you looked at the immuno-therapies? I would go with something better known with your current status. Are you paying out of pocket too?March 18, 2013 at 6:04 pm #59692kylezParticipant
The drug name is actual LGK974 (not LKG…). Nonetheless there’s not much on the web about it and melanoma. The trial is . It’s a “porcupine inhibitor” from Novartis with phase I for melanoma and lobular breast cancer. http://clinicaltrials.gov/ct2/show/NCT01351103?term=lgk974&rank=1 ” class=”bbcode_url”> http://clinicaltrials.gov/ct2/show/NCT01351103?term=lgk974&rank=1March 18, 2013 at 6:55 pm #59693 Yes, I read that. Phase I is just safety, so no results yet. I’m not sure what porcupine means here.. But there wasn’t any further information on it.March 18, 2013 at 8:33 pm #59694 Thanks for your comments.
Yes I am BRaf + and I took Zelboraf for about three months before tumors started growing and spreading again so I stopped. At Karmanos the sponsor is paying for drug and some tests, but other stuff like Bloodwork I will need to pay out of pocket. We are still discussing CT scans, if I can have them done in Canada then I’m covered there too. But I will need to bring the CDs with results to Karmanos each time. If I have to pay for scans then I will, but I want to ensure I’m on the best path. Didn’t sound too positive on Carbo-taxol.
Do you have any further suggestion? You mentioned immunotherapy?
Thanks for any and all input,
JimMarch 18, 2013 at 9:59 pm #59695AnonymousGuest
The standard chemos typically do not have a very high response rate. Carbo Taxol did not work for Rachel.
The trial you mentioned might target a specific receptor that’s common in melanoma, perhaps with a monoclonal antibody :
Or some other biological agent. Best to ask Karmonos. As the trial has been going on for a little while, they may share a bit of what they’re seeing. They were very helpful with us.
I’m sorry you have to go through this.
JeffMarch 18, 2013 at 11:43 pm #59696
I would look into some clinical trials in Canada, try the top places, such as those listed in our global sources. Also, the PD1 trial is in a number of places and that is the promising immunotherapy. Some folks also try a reinduction of Zelboraf after a break. The BRAF/Mek combo would be another choice for you and should be approved shortly in the U.S. I would keep looking beyond what you’ve been offered.March 19, 2013 at 3:39 pm #59697
Thanks to all for your valued input and suggestions.
I’m very grateful.
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