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January 20, 2013 at 12:08 pm #20949
My husband was diagnosed 111C last November. He had surgery in Dec. and intensive interferon and radiation in Feb, 2012. He got through about a month of the low dose and his platelets plummeted, so no more interferon. His platelets have been normal for about 5 months now. We just got the news that he is now stage 4. I am looking for an anti-pd1 trial for him. I don’t know if I should look for one with just anti-pd1 or in combination with something else, or another trial. He hasn’t had Yervoy. We live in Columbus, Ohio. We have close family in Tampa and can easily stay there. Any advice would be greatly appreciated.
Thanks, AngelaJanuary 20, 2013 at 1:16 pm #58633
Sorry to hear of all that you’ve been through with your husband’s melanoma. Is he officially stage 4 because of a particular metastasis? Does he have some evidence of disease they can remove? That is needed for both the MERCK and BMS trial. Wow, did how did I miss that he is now stage IV? Ok, slowing down to read this thoroughly. I have been listing the PD1 trials as they become available. For Tampa, you should contact Jeff Weber at Moffitt, however I’m not certain he has openings. Let me check for Ohio. You could also start with IPI/Yervoy first which you can get near home and then get into a PD1 trial. My apologies for misreading your post.. I’m recuperating from a medical procedure myself and trying to catch up!January 20, 2013 at 3:46 pm #58634
Since your husband is now Stage IV, there are many antiPD1 trials for which he may qualify. I would definitely check the website and contact a representative in the melanoma clinic at Moffitt Cancer Center in Tampa. I have been in an anti-PD1 trial there for over two years, living in TN, but traveling there for treatment. The last I heard, there are slots still available. I am not sure where to refer you in Ohio, but look for melanoma specialists there as well.
Wishing you and your husband the best….celesteJanuary 20, 2013 at 4:23 pm #58635
To answer your question about anti-PD1 trials further….My trial consists of peptide vaccines and anti-PD1 simultaneously for 6 months, followed by anti-PD1 infusions for two more years. I have been told that Moffitt has (or will soon have) ongoing trials utilizing anti-PD1 following ipi (Yervoy) as well as one giving the drugs together. You may want to look at Yervoy first, as some studies are showing that prior ipi use facillitates the action of anti-PD1. Other options include BRAF, combined with MEK or not, if your husband is positive for the mutation needed for the particular med. Additionally, TIL may be another option for you. Each study has its own stage, prior med, resectable vs nonresectable, and other inclusion/exclusion criteria. It is best to check with the institution you are interested in to see exactly what is available. Google the National Cancer Institute for a complete list of trials. Good luck. CJanuary 20, 2013 at 6:27 pm #58636 There is a PD1 trial opening in Cleveland, OH: contact Ernest Borden, 216-444-8183 email@example.com. (Cleveland Clinic) I hope you will keep in touch~!January 20, 2013 at 7:43 pm #58637 Thank you Celeste and Catherine. The options are now much clearer. I hope you recover well, Catherine.
AngelaJanuary 20, 2013 at 10:19 pm #58638
Let us know if you need further assistance in finding a trial for PD1 or other options. Has his tumor been tested for the BRAF mutation? If so, he would able to take the targeted therapies such as Zelboraf.January 29, 2013 at 3:02 pm #58639 Tim is Braf negative. He is starting Yervoy today.January 29, 2013 at 3:34 pm #58640 That’s sounds like a good path to start. Let us know how things go. We have a lot of information from other patients on Yervoy. Keep in touch.March 1, 2013 at 7:49 am #58641 Tim has had 2 Yervoy infusions. His side effects have been minimal, a little fatigue and stomach discomfort. He will have scans 4 weeks after his last infusion. I am researching plan B. An Anti PD L trial is available here in Columbus. Anyone have experiences or know of results with Anti PD L?
Thank you and wishing you all health and peace.
AngelaMarch 1, 2013 at 12:17 pm #58642
Not much is known about the PDL, but I think the results have been promising so far. It is early though in trials. Seems like a good plan..March 1, 2013 at 4:28 pm #58643 Thank you, Catherine.May 13, 2013 at 12:51 am #58644 Tim finished his 4 Yervoy treatments with little side effects. Four weeks after completion, he had a CT scan and MRI. 12 brain mets were found. He began whole brain radiation on Thursday 5/9. He will have 10 radiation treatments. We are now considering what comes next. Does anyone know any anti-pd1 trials that allow brain mets? We are also considering TIL. Anyone do TIL with brain mets?
AngelaAugust 16, 2013 at 2:21 am #58645
Tim also had gamma knife last week. He is having another CT scan next week. It has been over 3 months since his last scan. His oncologist is recommending temodar as a systemic treatment. Her thoughts are that it can work on anything left in the brain, too. I am thinking that if he can get a stable MRI, he should try for an anti PD1 trial. He can always get temodar even if he has brain mets return. Just wondering what the opinions are out there. Does anyone know if he can be on temodar and get into an anti PD1 trial?
AngelaAugust 16, 2013 at 2:36 pm #58646
You and your husband have been through so much. I am sorry. I do not know if you can be on temodar WHILE in an anti-PD1 trial….though I would still ask places you are interested in. There are many reports of individual patients who have shown good results with Temodar, though the overall data is not as good as some other treatments, but you never know….your husband may do well. For most anti-PD1 trials (including mine at Moffitt) you can join after brain mets have been treated in some fashion (some type of radiation or surgery) and scans prove stable for a designated period of time. If you still have family to stay with in Tampa, I would contact Moffitt again and check on the parameters for any ant-PD1 trials they have currently available.
Wishing you and your husband my best,
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