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June 6, 2013 at 1:11 pm #21344
Hello Catharine and other friends,
I have been on alternate dosing of Zel, 3 weeks on/2 weeks off since beginning of year. Lately, within 1 week of “off”, mets have been returning, growing. Most had gone flat and no longer light up PET, but on the “off” weeks, they seem to come alive again, become raised and grow in diameter. I even have a couple of new ones. So Dr. Wolchok & I decided to go off for 2 weeks & do scans to begin process for phase 1 trial @ Sloan w/no chemo arm. Today is 8 days off and I’m sure scalp mets have grown to almost the 1 cm of measurable disease needed. Scans were scheduled for next week.
Last night Dr Wolchok called to let me know that Merck has closed the trial…he couldn’t take anyone new. It was Merck’s decision, he has no control over it. He did say he had spoken w/ Dr Pavlivk at NYU & that she has seats in her phase 2 trial. So here are my concerns, and I really could use your input:
1. I’ve already done Temodar and am worried about effects of the other chemo’s. If I’m in the chemo arm, who choses which chemo I’d get? I know there’s crossover, i believe at 12 weeks (?) if I progress on chemo.
2. I could stay on the Zel, but because my mets go active so soon on my “off” weeks, I’m concerned that means that it will stop working soon…then what? Who knows what trial would be open at that point.
3. But, since I am still responding to Zel, i would have that in my back pocket if i failed Lambro.
4. IMPORTANT, I don’t even know if scalp, ear, face mets will show up on MRI, which is the scan used to determine eligibility. Has anyone had cutaneous Melanoma show up on MRI?? I’m pretty let down about all this, but maybe it’s for the best. Any suggestions, advice, thoughts are very welcome.
KarenJune 6, 2013 at 3:08 pm #61127
Please discuss these issues with Pavlick and Wolchok. I think I would lean towards the Phase II trial at NYU and see where you end up. The randomization is 2-1. Odds are in your favor. Also, might think about the BRAF/Mek just approved by FDA as an option. You need a good sit down chat with the docs..June 6, 2013 at 3:34 pm #61128 I just got an appointment with Dr. Pavlick for Monday.
I appreciate your input about the trial… I really value your opinion, Catharine, especially when it comes to clinical trials. Everyone refers to you as the expert.
I’ll keep you posted.
If anyone has experience with the chemo arm of this trial, please share.
KarenJune 6, 2013 at 8:45 pm #61129
Great! The chemo arms are: Carboplatin; Paclitaxel; Dacarbazine; and Temozolomide. Let us know how things go. Thanks for your kind words too!June 6, 2013 at 9:19 pm #61130odonoghue80Participant Just curious, if Zelboraf is working, why do 3 weeks on 2 weeks off? why not just stay on the whole time?June 7, 2013 at 3:07 am #61131erinmay22Participant Karen – I think you kind of got your answer – but I’d take the chance with the PD1 arm at NYU. Like you said, folks have great things to say about Dr P AND hopefully you’ll get the pd1 arm! Interesting that the Merck phase 1 is now closed at Sloan. I’m in that one now. Did they still have the BMS trial? guessing Dr W would tell you. I know when I started in Jan both were still open!
So great that Dr P could get you in on Monday!
Shane- as for the on/off schedule for Z, there is some studies showing that an intermittent schedule allows you to stay on the drug longer before progression. I know some of other patients of Dr W at Sloan doing the same schedule. It helps with side effects and hopefully prolonging progression. Hope you’re doing well!June 7, 2013 at 1:11 pm #61132
Thanks, Erinmay, I was just too pooped to reply last night. I was amazed that Dr. P got me in so quickly.
Regarding the BMS trial, apparently it excludes prior Remicade use, of which I had two infusions. It was the only thing that cured my Ipi-induced colitis.
It amazes and of course scares me how quickly old mets are growing and new ones are popping up. I now have a few in my ear that were never there before.
I’ll let you know how Monday’s appointment goes.
KarenJune 7, 2013 at 1:44 pm #61133
Karen, so since you’ve been off the Z, you have had progression? Another thought is the GSK braf/mek soon to be on the market, July hopefully. Usually the thought is to keep the tumor burden down and then start the immunotherapy. Shame about the exclusion with the BMS trial.June 8, 2013 at 12:35 am #61134msue5Participant Karen
I am thinking of you and hope you get what you need to keep your disease under control. Its hard enough to choose a plan and also think about how that treatment might affect future treatments. You had no choice about taking the Remicaide and who would think it would limit your choices in the future. I will be praying that the right thing comes along at the right time.
MarySueJune 12, 2013 at 7:12 pm #61135
I saw Dr. Pavlick at NYU on Monday; now I know why her patients like her so much! She’s quite smart, down-to-earth, just plain nice. She sees no problem with MRI of head and neck showing “measurable disease” required for trial, as I have mentioned, my mel has progressed in the 17 days since stopping z. The one in my ear is now quite worrisome and painful.
So even though I have more tumors, she is in favor of me being in the trial and keeping the GSK BRAF drugs and maybe even still zel in my back pocket.
I’m going back on the 25th to sign consent forms, have MRI and CT scans, and hopefully soon after begin the trial.
for those who responded, thank you.
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