Home Forums Melanoma Diagnosis: Stage IV Phase I Trial

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  • #21444
    mharlan
    Participant

    I am currently enrolled in a Phase I trial at Vanderbilt, and was told I was the first one accepted. The trial is a three arm trial testing Ipilimimab (Yervoy), Tafinlar (dabrafenib), and Mekinist (trametinib). I have been in the trial for almost 3 weeks and had my fist infusion of Yervoy Tuesday. Does anyone have any experience with the Dabrafenib, and Mekinist (trametinib) that was tested in combination? I’m excited to be in the trial and truly believe it is the right trial at the right time, but still seek all the information I can get, and first hand info is the best. :D

    #61778
    mharlan
    Participant

    I should also add my melanoma has decided to set up housekeeping in my liver. We considered surgery but then discovered there were 4 mets and maybe couldn’t get it all.

    #61779
    Simon Craigie
    Participant

    Hi,

    I have been on the GSK Combi-V trial (MEK 116513) since Dec 21, 2012 (dabrafenib/trametinib combo).

    No side effects and the two lesions in the mesentery of my abdomen have shrunk from 24mm to 16mm. From what I have researched I would have expected a more dramatic result in the first six weeks, which makes me wonder if there is something else happening, but we are all different!

    Most importantly for me is that there have been no new lesions. I had four tumours removed before starting the trial and the time between the tumours was getting less.

    In combination with the trial I am pretty careful with my diet (no meat apart from fish, no dairy, no alcohol, lots of vegetables and I juice a lot of carrots!). I exercise regularly and meditate daily.

    Cheers

    Simon

    #61780
    cindy5
    Participant

    My son started on it in March 2012 and has had good results with it. You must remember the combo does not completely protect the brain. My son had 2 spots show up in his brain in Febr 2013. He was easily treated with Gamma knife and reamined on the combo. Had recurrance at the original site (adrenal) but doctor felt it was because he was off the meds during the Gamma knife (about 5 weeks) Since, then he seems to be doing well. He will have another MRI and PET end of July.

    He has a significant amount of joint pain in only 1 hip and both ankles and feet. He also gets fevers approximately once a week. He also chills easily.

    #61781
    mharlan
    Participant

    Thanks for the posts. I have just recently started having chills, fevers and headaches about one week after adding Yervoy the to the dabrafenib and trametinib. Nothing so severe as to change anything, except the fever did get to 103 once, which scared me a little, but we got it under control pretty quickly, and I never felt really bad. I think I’m more concerned with the liver enzymes that I won’t get checked for another two weeks, but so far so good. I don’t know what it is but I just have a feeling that all three drugs will provide a great response that hopefully will be durable, with a complete response being pie. :D

    #61782
    MathewR
    Participant

    Hi, can anyone provide any details regarding how folks are doing on this trial combining ipi, tafinlar & mekinist? Thanks.

    #61783
    mharlan
    Participant

    So , just to update, I had kidney failure the end of July and wound up in the hospital for a week. We have now reduced dosage of the Braf and MEK combo, but still seem to be getting great results. Scans after I left the hospital, and remember I was only on the combo for about 3 weeks prior to the kidney failure, revealed a reduction in tumor burden of about 50%, so that was great. Second scans were completed first week of October and the reduction had continued with a total reduction in the 60% to 65% range. A couple of mets displayed no shrinkage, but no growth either. I have only had one dose of the IPI, and may not get more at this time as it may have contributed to the Kidney failure. Next scans are this coming Monday, December 9, so I’ll try and post the results as quickly as possible. I find it intriguing that it is best we should move to new treatments before disease progression. How do we determine when that is? I mean how do we know we are going to progress untill we progress? Oh well.

    Overall, I feel really great. I do take prednesone to help regulate side effects, of which I really have none as a result, other than overeating. I still work full time, and as someone else stated, this melanoma thing actually occupies very little of my life at this time. This stuff is what it is and we just have to do battle each day, not let up.

    #61784
    mharlan
    Participant

    Well, off trial now. Lesions have developed resistance to the drugs and are increasing in size. Now we move on to IL2 in early January. Results do not look good for this drug, but at the same time if you do respond it seems the response is pretty good. The preferred course was PD-1, but I don’t qualify of any of the open trials because I had one dose of Ipi in July. Hopefully PD-1 will be approved in the not too distant future.

    #61785
    MathewR
    Participant

    I’m sorry to hear about this development in your treatment. Have you looked into a PD-l1 trial? That drug is at an earlier stage than PD-1–perhaps they accept ipi refractory patients? Also see Jonathan’s posts re: ADC as another potential alternative.

    #61786
    MathewR
    Participant

    Meant to say PD-L1

    #61787
    Catherine Poole
    Keymaster

    I know there are a few slots open at Sarah Cannon in the ADC trial, far less toxic and promising than IL2. And yes, the PDL is also recruiting in a few places. Do check them out before the IL2, I realize the benefits to 6% but there is the 94% who don’t respond to IL2 that is the downside. I hope things get better for you!

    #61788
    Lesli
    Participant

    I have been on the Zelboraf (Vemurafenib) and Mekinist combo since the beginning of October. My doctor elected to go with Vemurafenib rather than Taflinar (Dabrafenib) because he was much more experienced with that drug. He insisted that the two were the same in how they work as Braf inhibitors.

    Initially in the first two weeks,I had an immediate (as in the first 48 hours) positive response. Pain decreased, energy levels improved, swelling in my liver subsided.

    At about two weeks, I had what seems like an allergic reaction and I worked by way down the list of side effects for both drugs: rash, severe rash, photosensitivity (severe photosensitivity), mouth ulcers, edema in legs and ankles, acne. My oncologist reduced the Zelboraf to 50% for a week, took me off Zelboraf altogether for a few days and then over the course of 2 weeks increased dosage back to 100%. I have had no problems for the past month–all side effects have subsided. My oncologist has had success with this technique in the past.

    Upon diagnosis, I had 7 tumors in my liver, significant tumor burden in my bones and 1 metastasis in the brain which was gamma knifed (a verb?) before starting systemic treatment.

    I am amazed by the effect of the Zelboraf and Mekinist combo and like Matt, am carrying on with work and family.

    My oncologist is recommending that we switch to Yervoy before progression inevitably begins. I am hoping to participate in a trial or access Nivolumab along with Yervoy because of what seems like very promising results.

    #61789
    mharlan
    Participant

    The PDL-1 trial that is listed as recruting is actually closed, at least that’s what I am told. Anyway, I had my Brain MRI and discovered I now have Brain mets, so it’s Cyberknife time. The area looks to be very small, and the doctor says one 30 to 45 minute treatment should be all I will need, but then things change. We’ll see. Once this is over, we’ll scan again in a couple weeks (MRI) and if all looks well we’ll get to the IL-2. I hold hope that it will work it’s magic.

    #61790
    Catherine Poole
    Keymaster

    The PDL trial is open at some centers. The PDL with either braf/mek or mek alone with PDL is opening the 10th of January and is posted on this forum

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