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December 27, 2012 at 6:51 am #20878
Hi! I’m new on this forum. My mom’s choroidal (ocular) melanoma resurfaced this fall as aggressive and “innumerable” liver tumors. Her docs at Dana Farber suggested their STA-9090 trial, but we’re looking at a few trials in NYC, including this one, that are more aggressive: http://clinicaltrials.gov/ct2/show/NCT01024231
We can’t get any info from NYC without going down there, so I’m wondering if anyone here has experience with either of these trials, and/or experience with starting any treatment for someone whose liver is already so compromised. Like most OM patients, she is BRAF negative.
Thanks so much!
SarahDecember 27, 2012 at 12:54 pm #58171Catherine PooleKeymaster
Welcome to our forum. This trial looks promising, ipi and pd1 combined and we are all looking forward to the results of combining these two therapies. Do you mean NYU? Or Sloan Kettering? These are excellent places for treatment. I would definitely check it out.December 27, 2012 at 1:02 pm #58172
Sloan. We’re mostly concerned about the side effects, since she’s so sick – my mother-in-law had ipi last year (I know…) with no side effects, but she was extremely healthy at the time.December 27, 2012 at 3:17 pm #58173AnonymousGuest Sarah:
That is the trial my wife Rachel was enrolled in, specifically cohort 7 as she had completed the IPI just 6 weeks prior. Unfortunately she was excluded at the last moment due to a couple of tiny brain tumors discovered on the last set of scans taken a week prior to treatment.
It is a very promising trial and the staff at Sloan are great.
However, talk to them. At the time they had in internal requirement that you had to be within a two hour commute window, but they made an exception for us as we were extremely motivated and had the means to get there regulary. But talk to them. Also, as you guys are so far out from the previous IPI induction, you may be able to do the IPI + PD1 cohorts. But talk to them and the Yale staff (who were also great)
Also, you are doing something wonderful here for someone you love.
JeffDecember 27, 2012 at 6:23 pm #58174erinmay22Participant
Sorry to hear about your mom. I am a patient at Sloan. I haven’t started the trial yet… I meet with them on Jan 8th to get signed up. I completed my last dose of Ipi on Nov 27th. Scans on Dec 18th showed a lymph node still growing. (Everything else was clear).
They have great doctors there! I also know there is a similar trial going on at Yale also. not sure where you are traveling from?
Best of luck!
ErinDecember 27, 2012 at 8:30 pm #58175AnonymousGuest
Erin brought up something I forgot about, there is a process you must go through at Sloan. I was coached on the process by the trial staff.
Rachel had to become a patient at Sloan first. That entailed included me calling them up and requesting a consult with “the first available oncologist on call”. That got us an appointment about 7 days later. If you ask to see a specific member of the team, that can push the appointment out by a couple of weeks. We also needed to state upfront that the purpose of the consult was to obtain a referral from the Sloan oncologist to the clinical trial team for a specific trial. That provided focus for everybody.
In the mean time, our local oncologist and his staff touched base with them and provided what ever the Sloan oncologist and the Sloan clinical team needed to facilitate the process on their end prior to the first visit. This included all path reports, scans (in the specified format), bloodwork, tumor samples (including stained and unstained slides), notes and so forth.
The upfront leg work paid off as we were refered to the Sloan clinical team and the specific trial the very day after the first visit. A few days later the clinical team called and said they had a slot in the trial for Rachel and invited us back the next week for the start of the screening process.
It took about 3 weeks from the first call to first scheduled PD1 infusion. Unfortunately, as I said before, Rachel was excluded at the last minute because of two tiny (3-5mm) brain mets.
The point is you have to act quickly, clearly and aggressively. But it can be done in a reasonnble amount of time.
Also, as you are already under the care of the fantastic Dana Farber clincial team, they may be able to work a “deal-deal” with the Slaon team to make things go quicker.
Hope this helps.
JeffDecember 28, 2012 at 1:06 pm #58176Catherine PooleKeymaster
Both the PD1 trials are opening up in many locations, so you are not restricted to Sloan by any means. Be sure to check what I’ve posted and also go to http://www.clinicaltrials.govfor locations. You may be able to find something that is geographically convenient!December 28, 2012 at 5:38 pm #58177erinmay22Participant Jeff – thanks for adding that info. I don’t remember all that since I’m already a patient at Sloan…
Best of luck! I’m anxious to get going. Not sure what my first appointment will be. Last 2 times I tried to do trials at Sloan they had me signing papers that day. Now I have to meet with the trial doctor… hopefully they won’t make me scan again since it approximately 3-4 weeks since I had scans.
Have a great weekend everyone!
ErinDecember 28, 2012 at 7:09 pm #58178AnonymousGuest
Good luck with this trial! Hopefully, the IPI/PD1 combo is “killer” for the melanoma. Regarding scans, if your previous ones were done at Sloan and inside of 28 days from the beginning of the trial, you may well be good to go without new ones.
Sarah, Catherine is absolutely right. That trial link you provided is a special bi-therapy trial combining IPI and the BMX PD1. However, thanks in part to her tireless efforts, a LOT more mono-therapy PD1 trials are openning up in many other locations. The trips for us to Sloan from the Cincinnati area were a bit grueling for Rachel but, at the time (early May), that’s all we really had available to us for PD1, especially right after Rachel had completed IPI. The other PD1 mono-therapy trials outside of Sloan were full and/or had either a 12 week minimum wash-out period for the IPI or an outright exclusion for prior IPI. So if you can find a PD1 trial closer for your Mom than Sloan, that could be the very best solution for you two. Remember you have to be able to get her to a trial in the first place, as well as for the long haul, and get her there comfortably.
Good Luck and Prayers!
JeffDecember 29, 2012 at 4:27 am #58179
Thank you all for the advice! I’m sorry this wasn’t clear – I’m looking for treatment for my mother. My mother-in-law had ipi last summer, not my mom! I know, two moms with melanoma, weird. Anyway, a lot of the other PD1 trials look like they either exclude ocular melanoma or require you to be BRAF positive. I’ll definitely comb through them, though. We are in Boston but could fairly easily get to New York where my mom’s brother lives. Our main concern is the side effects of ipi (especially liver failure). It seems like the new drugs have fewer side effects.
We have an appointment at Sloan on 1/17 but my mom’s tumor is growing like crazy and I don’t know if we can wait that long. Our doc at Dana said she’d call Sloan for us on Monday so hopefully that will help move things along.
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