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July 28, 2013 at 2:32 pm #21472
I traveled down to Moffitt this past week to enter a MAGE vaccine trial for Stage IV NED patients. Unfortunately due to some delays with pathology request the scans I had several weeks ago which indicated no disease are now not recent enough for the trial so I had to get rescanned. The new scans showed evidence of disease so I had to come up with a new game plan. I’m now looking to travel back down to Moffitt this upcoming week to enter the BMS Nivo/IPI combo trial. There’s been a lot of press on this new combo but surprisingly I haven’t heard of many people on this forum enrolled in the trial. Would love to hear from someone on the trial if they could share their experinences so far. Thanks!
BrianJuly 28, 2013 at 5:55 pm #61932Catherine PooleKeymaster
I think the trials are small and only at a few locations. Where do you travel from? I think Sloan Kettering and Yale have them too. Have to look it up. I have only heard of promising results from this combination and hope the trial proves that as well. let us know how you are doing, side effects, etc so you can be the trailblazer here! Best of luck to you.July 28, 2013 at 6:21 pm #61933gostanParticipant Brian, best of luck with the BMS Combo trial. I wish that I had some experiences to pass on to you, but a couple of brain mets have put this trial on back burner for me. As Catherine aptly put it, you can be the trailblazer here on this one. I am looking forward to you giving us some real life experiences w/this one.July 30, 2013 at 2:39 am #61934Angela21Participant I hope you do well. Its great that you got in right away. What is the nct number?
AngelaJuly 30, 2013 at 2:42 am #61935
It looks like it’s recruiting at 2 or 3 other sites. I just found out tonight that it may be recruiting at UVA as of 1 July.July 30, 2013 at 2:52 am #61936Angela21Participant
That was a quick response, thank you!August 15, 2013 at 3:13 am #61937 It was quite a road to get enrolled but I finally received my first infusion on the BMS Nivo/IPI combo trial yesterday. This particular trial is the sequential Nivo/IPI treatment. I am in the arm which gets 6 infusions of Nivo over 12 weeks, then 4 infusions of IPI over 12 weeks, then about 2 additional years of Nivo infusions every 2 weeks. UVA has 5 patients enrolled, 8 slots available, and 3 patients currently in screening. Apparently they have requested 2 additional slots from BMS. I’m only 24 hours into it but so far so good. First scan is at 12 weeks. That will be the real test as to how I am doing.
BrianAugust 15, 2013 at 12:32 pm #61938gostanParticipant
Please keep us all here up to date on how the combo trial goes for you. We are all wishing you the best over the next 12 weeks and thereafter. Let us know what, if any, side effects you have to deal with.
I am still hoping to gain entry to this trial in Boston in mid-late September, so I know what you mean when you say that it was quite a road to together enrolled.August 24, 2013 at 7:27 pm #61939
hi Brian —
I am on the BMS phase 1 ipi & nivolumab combo trial at Sloan-Kettering in NY with Dr. Wolchok.
I go for my second combination dose next week.
So far, I’m feeling fine; though I gather the adverse effects tend to arise after the third or fourth treatment dose.
I am spending so much time flying back & forth from NY for my checkins with the trial nurse that I haven’t been posting much!
(plus I’ve got little boys to get ready for back-to-school..)
— but my husband writes regular updates on our blog, which I think should be in my signature.
The first scans to measure response will be Oct 29, and I’ll certainly post here what the response is.
Keep us posted on what happens with your treatment..
all the best,
UrsulaAugust 25, 2013 at 4:47 am #61940
Looks like you and I are just about on the same timeline. I have my second infusion on Monday the 26th. I have heard the same thing you have about fatigue not kicking in until the 3rd or 4th dose. I’ve felt pretty good for the first two weeks. Are you on the Nivo-IPI-Nivo arm also? I have about a 6 hour drive each way for my infusions. This week we are combining the trip with a little pleasure before my little ones start back to school. I’ll be sure to post when I get home any updates or info I get during my visit on Monday.
BrianAugust 25, 2013 at 2:31 pm #61941
Glad you’re feeling well, too.
I’m on a BMS phase IB trial where I get a combination of Nivo & Ipi every three weeks x 4 doses, and then Nivo alone every two weeks thereafter. Sounds like a slightly different protocol.
Good luck with the back-to-school transition & your long drives (I have a 5-hour flight — anxious about possible GI side effects, but I’ll deal with that as they come, I guess!)
ursulasmelanomablog.wordpress.comAugust 25, 2013 at 5:14 pm #61942Catherine PooleKeymaster
Welcome to our forum. Where are you doing the combo? How are you feeling? Any scans yet? This is very promising and I hope it works well for you!August 27, 2013 at 3:38 pm #61943 hi —
Hanging out in the airport on the way to get my second dose.
Brian: how old are your little ones? Are they holding up OK with regards to your dx?
If you are feeling sad about your drive, consider that you do not have to interact with inane customs agents as you cross the border into another country:
Customs agent: What is the purpose of your trip?
Me, keeping it vague: Medical treatment
C: For what?
C: They don’t have cancer treatment in Canada?
me: Well, yes … but I’m part of an experimental trial
C: They’re experimenting on you? What kind of cancer do you
C: Oh, just skin cancer. Well that’s sure a long way to go to get treatment for skin cancer. Do you have anything to declare?
C: (long story about various people in his life who were given ten days to live, but then beat their cancers with a positive attitude)
Sigh. I suppose I would be displaying the scientifically-validated, death-hastening factor of ‘Negative Attitude’ if I swore at a border agent, right?
👿So, so far I’ve refrained.
Someday, people are going to know what melanoma IS!
ursulasmelanomablog.wordpress.comSeptember 12, 2013 at 2:30 am #61944
Sorry I didn’t see your last post until just now. Hope you still feel great. I won’t complain about my drive anymore after reading your border crossing ordeal!
My kids are doing great. We really haven’t talked to them too much about my dx. They are only 3 and 4 so we have chosen to isolate them from the melanoma world for the most part. Right now they know daddy goes to see the doctor to make sure he continues to feel good. They are two very happy and carefree kids and I hope to be able to keep them that way for as long as possible. Now if my physical appearance begins to deteriorate or my prognosis takes a turn for the worst then we will reevaluate how we will talk to the kids. Right now they are excited for our trip to Disney next week!
I just had my 3rd infusion a couple days ago. Still feeling pretty good. Really can’t say I have any side effects up to this point. I have a little fatigue but I still attribute that to my anemia which I have a history of and which I have been since coming off interferon in Dec. Some of my blood numbers have dropped off a little bit since starting the treatment. Nothing more than grade I and grade II up to this point. Probably the most significant one is my WBC count is down to 2.83. Dr. Weiss says it’s not too uncommon for some of the numbers to drop off. I’m hoping they will stabilize or even start trending up.
A little info on the trial. Apparently the trial has closed at many sites. At UVA I am now 1 of 5 patients in the trial. There are still 3 in screening so there could be 8 total if all 3 make if through screening but there will be no more at UVA after these 3. They were looking for about 80 patients total from all the sites and I think they have achieved that. There are some sites that are still accepting patients because they are doing a couple sub-studies within the trial and they need a few more patients to complete those sub-studies. I think Moffitt is one of those sites but I’m not sure of the others.
Well that’s all for this update. Bottomline is the treatment is still be well tolerated. I just competed week 5 of the study and my first scan will be at week 13. That will tell the real tale as to how I’m doing!
BrianNovember 25, 2013 at 4:57 pm #61945
Wanted to give a quick update to my trial since it’s been a while. Finished up the first 12 weeks (6 infusions of Nivo) and had my first scans. Scan results showed shrinkage in the two tumors I have and no new disease. Side effects on the Nivo were very minimal. Around the 5th infusion I started getting stiffness in my hands but that was about it. I’m having my number two of four IPI infusions today and so far so good on the IPI as well. A little more fatigue on the IPI than on the Nivo and still the stiff hands but all and all I can’t complain.
Also wanted to share info from my clinical trial coordinator. Asked him about any new trials upcoming and he said there is a Merck pd1 trial they hope to be starting up here at UVA in December (I’m sure other places as well but I didn’t ask where). Sounds like its going to be a 3 arm trial: 1) 3 mg/Kg Nivo, 2) 10 mg/Kg Nivo, 3) 10 mg/Kg IPI. I was a little surprised about the IPI dosage because I thought I saw recently where studies have shown there is not a significant benefit to 10 mg/Kg over 3 mg/Kg of IPI but that the toxicities are greater with the 10 mg/kg. Hope this information helps someone looking for a pd1 trial in the future.
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