› Forums › General Melanoma Community › starting a new trial
- This topic has 33 replies, 7 voices, and was last updated 9 years, 11 months ago by
ecc26.
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- May 4, 2016 at 3:12 pm
Been a long time (again) since I've been able to spend any time on this board. I've been OK, for the most part, but the PD-1 I had been doing so well on for so long started showing signs of failure last fall. I had to have 2 masses in my chest radiated in October, then the brain mets started returning- 15 in December, another 11 in January. Both rounds were treated with gamma knife. Not being particularly excited about FDA approved possibilities, I started looking for trials.
I came across this one: https://clinicaltrials.gov/ct2/show/NCT02308020?term=melanoma&recr=Open&state1=NA%3AUS%3AMA&age=1&phase=1&rank=13 for the drug Abemaciclib- which is a CDK4/6 inhibitor. It's an oral medication and after the phase I trials recieved breakthrough statsus. It's being tested on certain types of breast cancer, melanoma, and non-small cell lung cancer patients, and this study in particular is seeking out those of us with brain mets as phase I showed that it had good penetration to the brain.
The clinicaltrials.gov site listed above should tell you where it's being offered, if you're interested. A few things to be aware of though- 1) you have to have at least 1 brain met that's over 1 cm, 2) just because this site says if offered at a particular location, doesn't mean they're offering it to melanoma patietnts, so be sure to ask.
The latter I found out when I set up an appointment at Dana Farber in Boston. I brought the first page of the clinicaltrials.gov with me, just to be prepared. It never occured to me that it wouldn't be open to melanoma patients. As we sat in the room listening to the doctor tell us about what might be the next steps, I realized she hadn't/wasn't mentioning the trial, so I stopped her and asked. She had no idea what I was taling about, so I handed her my printout, which she took a quick look at, then turned around to search her computer. She took a few min, then turned around again and said: "It's not listed under melanoma for us, but it should be". She sent us to the cafeteria while she went to try and figure out why it wasn't listed and why she didn't know about it.
Turns out that it was only being offered for breast cancer patients, but she felt strongly enough that it would be a good trial for melanoma patients that she requested to have herself added to the protocol, at least for me. That took a couple of weeks, which was ok, because I needed time form my brain mets to get to the required size. Last week I signed the consent form, tomorrow we'll be doing pre-screening, and if all goes well, I'll start treatment on Friday.
I'm both excited and nervous. I'm really hopeful that it works, but a bit nervous about where I'll end up if it doesn't. Concerned that I might have made a mistake that might be too late to fix if this doesn't work. They'll be scanning every 21 days, so they should know pretty quickly if it's working or not- especially in the brain, but still…
Anyway, mostly just wanted to let you know, if you didn't already, that there is a trial out there that actually wants you to have brain mets, and it never hurts to ask/be prepared, because sometimes it just takes a peice of paper to spark an interest/get things going.
Best of luck to you all as you continue your battle
-Eva
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- May 4, 2016 at 4:59 pm
Sorry you had to…but way to hustle, Eva!!! It does seem that the CDK4/6 inhibitors hold a great deal of promise. Here are a couple of articles that may interest you….though they don't address your particular drug…just the category….
This one addresses voruciclib combined with the BRAFi vermurafenib in the second article: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-new-braf-inhibitor-combos-for.html
And yes, it is very hard to find trials for folks with brain mets. So glad you can participate in this one. I wish you well. Thanks for sharing. Celeste
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- May 4, 2016 at 4:59 pm
Sorry you had to…but way to hustle, Eva!!! It does seem that the CDK4/6 inhibitors hold a great deal of promise. Here are a couple of articles that may interest you….though they don't address your particular drug…just the category….
This one addresses voruciclib combined with the BRAFi vermurafenib in the second article: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-new-braf-inhibitor-combos-for.html
And yes, it is very hard to find trials for folks with brain mets. So glad you can participate in this one. I wish you well. Thanks for sharing. Celeste
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- May 4, 2016 at 4:59 pm
Sorry you had to…but way to hustle, Eva!!! It does seem that the CDK4/6 inhibitors hold a great deal of promise. Here are a couple of articles that may interest you….though they don't address your particular drug…just the category….
This one addresses voruciclib combined with the BRAFi vermurafenib in the second article: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-new-braf-inhibitor-combos-for.html
And yes, it is very hard to find trials for folks with brain mets. So glad you can participate in this one. I wish you well. Thanks for sharing. Celeste
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- May 4, 2016 at 6:26 pm
Eva, good to hear from you. Sorry to hear about the progression, but the trial sounds promising. Your story also demonstrates the need for each of us (Stage IV) to take control of our own care. These top melanoma specialists/institutions have good (even great) intentions, but they are volume practices. In addition, each onc tends to focus on what "they" do as opposed to the bigger picture of all available options. The reality is that we can't really rely on anyone but ourselves, which is why these forums are so valuable.
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- May 6, 2016 at 2:13 pm
I'm glad to see you're still here as well- I've got some catching up to do on your posts and what's been going on with you and many of the others, but mostly I'm glad to see some familiar names, glad you're still here. There's hope for everyone and new things are always being developed and becoming available to us. One of these days we'll at least get to the point of having enough options for every situation and I hope everyone is around to see that day.
-Eva
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- May 6, 2016 at 2:13 pm
I'm glad to see you're still here as well- I've got some catching up to do on your posts and what's been going on with you and many of the others, but mostly I'm glad to see some familiar names, glad you're still here. There's hope for everyone and new things are always being developed and becoming available to us. One of these days we'll at least get to the point of having enough options for every situation and I hope everyone is around to see that day.
-Eva
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- May 6, 2016 at 2:13 pm
I'm glad to see you're still here as well- I've got some catching up to do on your posts and what's been going on with you and many of the others, but mostly I'm glad to see some familiar names, glad you're still here. There's hope for everyone and new things are always being developed and becoming available to us. One of these days we'll at least get to the point of having enough options for every situation and I hope everyone is around to see that day.
-Eva
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- May 4, 2016 at 6:26 pm
Eva, good to hear from you. Sorry to hear about the progression, but the trial sounds promising. Your story also demonstrates the need for each of us (Stage IV) to take control of our own care. These top melanoma specialists/institutions have good (even great) intentions, but they are volume practices. In addition, each onc tends to focus on what "they" do as opposed to the bigger picture of all available options. The reality is that we can't really rely on anyone but ourselves, which is why these forums are so valuable.
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- May 4, 2016 at 6:26 pm
Eva, good to hear from you. Sorry to hear about the progression, but the trial sounds promising. Your story also demonstrates the need for each of us (Stage IV) to take control of our own care. These top melanoma specialists/institutions have good (even great) intentions, but they are volume practices. In addition, each onc tends to focus on what "they" do as opposed to the bigger picture of all available options. The reality is that we can't really rely on anyone but ourselves, which is why these forums are so valuable.
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- May 4, 2016 at 6:33 pm
Hi Eva, great job on getting what you wanted from your Oncologist. Knowledge is power and on that note there is a Brain guy (Dr. David A Reardon) at Dana Farber that you should try to network with. Here is a link to Cancer Research Institute video with him talking about immunotherapy and it's use in Various brain cancers. Best wishes!!!!Ed http://www.cancerresearch.org/news-publications/webinars/webinar-david-reardon-en
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- May 4, 2016 at 6:33 pm
Hi Eva, great job on getting what you wanted from your Oncologist. Knowledge is power and on that note there is a Brain guy (Dr. David A Reardon) at Dana Farber that you should try to network with. Here is a link to Cancer Research Institute video with him talking about immunotherapy and it's use in Various brain cancers. Best wishes!!!!Ed http://www.cancerresearch.org/news-publications/webinars/webinar-david-reardon-en
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- May 4, 2016 at 6:33 pm
Hi Eva, great job on getting what you wanted from your Oncologist. Knowledge is power and on that note there is a Brain guy (Dr. David A Reardon) at Dana Farber that you should try to network with. Here is a link to Cancer Research Institute video with him talking about immunotherapy and it's use in Various brain cancers. Best wishes!!!!Ed http://www.cancerresearch.org/news-publications/webinars/webinar-david-reardon-en
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- May 5, 2016 at 12:12 am
Hi Eva, that’s amazing that you worked it into a trial! I’ve lived and worked in Boston for years (presently in New Hamsphire) and Dana Farber is an amazing place. If you have any questions on where to stay or eat or park or what to do or anything, shoot me a message. I’m in town every week while on Ipi/nivo. You’ll be in my thoughts! -
- May 5, 2016 at 12:12 am
Hi Eva, that’s amazing that you worked it into a trial! I’ve lived and worked in Boston for years (presently in New Hamsphire) and Dana Farber is an amazing place. If you have any questions on where to stay or eat or park or what to do or anything, shoot me a message. I’m in town every week while on Ipi/nivo. You’ll be in my thoughts!-
- May 6, 2016 at 2:06 pm
Can you not get the combo closer to home? My understanding was that it was now FDA approved and available everywhere. Or is it that you just like and are comfortable at Dana Farber?
Thanks for the offer about places to stay, etc. We've got some experience with the area after last fall's expanded access trial. Unfortunately it's a 6 hr drive and the issue is more the travel expenses and time than actually finding a place to stay. We've stayed with family outside the city area before, but found it was really difficult for us to guage traffic in the morning and get to my appointment(s) on time, so we've switched to nearby hotels. It would be nice if there was some sort of reduced rate available for those through Dana Farber, but we've investigated that in the past with dissapointing results- usually requires a longer stay than we typically need. The trial will reimberse a fair bit for milage/gas, but not for hotels. I'm going to check with our local Cancer Resource Center to see about other options for travel/hotels. We've checked with them in the past and they sometimes have some good options. We're are really lucky that we have a good, well connected resource center in our home town- I try not to take advantage of them, but when we have to make repeated "long distance" trips, I will check in with them to see if they can help. I just feel that so often there are others more in need than we are. In general I've done well, we have good insurance, and both have good jobs that pay relatively well, and I know there are others out there that are not in that situation, so I don't like to go looking for "free stuff" when we don't need it, but others do.
Anyway, please feel free to e-mail me- perhaps our appointment schedule will line up at some point and we can meet for some tea or something.
-Eva
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- May 6, 2016 at 2:06 pm
Can you not get the combo closer to home? My understanding was that it was now FDA approved and available everywhere. Or is it that you just like and are comfortable at Dana Farber?
Thanks for the offer about places to stay, etc. We've got some experience with the area after last fall's expanded access trial. Unfortunately it's a 6 hr drive and the issue is more the travel expenses and time than actually finding a place to stay. We've stayed with family outside the city area before, but found it was really difficult for us to guage traffic in the morning and get to my appointment(s) on time, so we've switched to nearby hotels. It would be nice if there was some sort of reduced rate available for those through Dana Farber, but we've investigated that in the past with dissapointing results- usually requires a longer stay than we typically need. The trial will reimberse a fair bit for milage/gas, but not for hotels. I'm going to check with our local Cancer Resource Center to see about other options for travel/hotels. We've checked with them in the past and they sometimes have some good options. We're are really lucky that we have a good, well connected resource center in our home town- I try not to take advantage of them, but when we have to make repeated "long distance" trips, I will check in with them to see if they can help. I just feel that so often there are others more in need than we are. In general I've done well, we have good insurance, and both have good jobs that pay relatively well, and I know there are others out there that are not in that situation, so I don't like to go looking for "free stuff" when we don't need it, but others do.
Anyway, please feel free to e-mail me- perhaps our appointment schedule will line up at some point and we can meet for some tea or something.
-Eva
-
- May 6, 2016 at 2:06 pm
Can you not get the combo closer to home? My understanding was that it was now FDA approved and available everywhere. Or is it that you just like and are comfortable at Dana Farber?
Thanks for the offer about places to stay, etc. We've got some experience with the area after last fall's expanded access trial. Unfortunately it's a 6 hr drive and the issue is more the travel expenses and time than actually finding a place to stay. We've stayed with family outside the city area before, but found it was really difficult for us to guage traffic in the morning and get to my appointment(s) on time, so we've switched to nearby hotels. It would be nice if there was some sort of reduced rate available for those through Dana Farber, but we've investigated that in the past with dissapointing results- usually requires a longer stay than we typically need. The trial will reimberse a fair bit for milage/gas, but not for hotels. I'm going to check with our local Cancer Resource Center to see about other options for travel/hotels. We've checked with them in the past and they sometimes have some good options. We're are really lucky that we have a good, well connected resource center in our home town- I try not to take advantage of them, but when we have to make repeated "long distance" trips, I will check in with them to see if they can help. I just feel that so often there are others more in need than we are. In general I've done well, we have good insurance, and both have good jobs that pay relatively well, and I know there are others out there that are not in that situation, so I don't like to go looking for "free stuff" when we don't need it, but others do.
Anyway, please feel free to e-mail me- perhaps our appointment schedule will line up at some point and we can meet for some tea or something.
-Eva
-
- May 5, 2016 at 12:12 am
Hi Eva, that’s amazing that you worked it into a trial! I’ve lived and worked in Boston for years (presently in New Hamsphire) and Dana Farber is an amazing place. If you have any questions on where to stay or eat or park or what to do or anything, shoot me a message. I’m in town every week while on Ipi/nivo. You’ll be in my thoughts! -
- May 5, 2016 at 9:22 pm
Good to see you on here again, Eva! I wish it was under better circumstances but thanks so much for sharing the information about the trial and your experience getting into it. That's really useful information. I'm keeping my fingers crossed that this trial goes really well for you!
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- May 5, 2016 at 9:22 pm
Good to see you on here again, Eva! I wish it was under better circumstances but thanks so much for sharing the information about the trial and your experience getting into it. That's really useful information. I'm keeping my fingers crossed that this trial goes really well for you!
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- May 5, 2016 at 9:22 pm
Good to see you on here again, Eva! I wish it was under better circumstances but thanks so much for sharing the information about the trial and your experience getting into it. That's really useful information. I'm keeping my fingers crossed that this trial goes really well for you!
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