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January 29, 2016 at 5:14 pm #67789
I just returned from the most wonderful week of powder skiing in Utah. So glad that I had this opportunity. Before I left I received the results of my first Brain and Body Scans since beginning my PD1 infusions 15 weeks ago. Luckily, the Brain MRI showed no progression since my SRS treatments. However, my CT Scan showed a mixed bag of results. Some nodules in my abdomen and chest were smaller, but many were larger with a few disappearing and several new ones, indicating that the immunotherapy infusions were not likely working. Dr. Hodi already began discussing other alternatives with me, but agreed the we should go ahead with Infusion #5, which we did, and I am scheduled to undergo another CT Scan in early February to determine if the immunotherapy treatments have kicked in. If not, he is talking about switching me over to either a new clinical trial @ DF studying the use of Blembatumumab Vedotin in Patients with Advance Melanoma, which has apparently been used for stage 4 breast cancer patients, or to Interlukin II @ Beth Israel. I am just praying that the immunotherapy infusion(s) begin to work, because I am not really enamored with either of these choices. Meanwhile, I will be back skiing in Vermont this weekend. Have to get my ski runs in while I still can.January 30, 2016 at 1:33 pm #firstname.lastname@example.orgParticipant Hi Stan: Great to hear that you are still so active and enjoying the outdoors but sorry to hear about having to get scanned again in Feb and the possibility that the Keytruda isn’t working. My husband has been a patient at DF in Boston and at Mass Gen – he also did about 5-6 infusions of Keytruda (after having ipi) before the DF Dr. convinced us that while there was certainly a “mixed” response, there was too much growth to convince him that my husband was a responder so he then switched to BRAF/Mek with the addition of a third drug (novel agent) in a trial at Mass Gen. I guess my question to Dr. Hodi would be this: is he able to give you an insight into whether or not you will be a responder to the Blembatumab Vedotin? I was reading about the trial (because we will also be in the same situation if and when my husband progresses on BRAF/Mek) and it seems that many cancers express this GPNmb protein which leads to growth. The Blembatumab targets that overexpression. Has Dr. Hodi ever offered doing a more thorough analysis of your tumor tissue to see which novel therapy might be a better match for you? I am going to ask Mass Gen that question next week – about getting a more detailed analysis of his mutational status so we have some guidance on which novel therapy might work. I have read about other cancer centers “routinely” running tests against multiple known mutational alterations in melanoma outside of BRAF, NRAS, c-kit…whether they have a trial to match you up against is another issue but I would think it is worth knowing if you have any other targetable mutations..there is a “crossover” trial after failing BRAF/Mek running at Mass Gen (NCT02159066) that uses your tissue sample and assigns you to one of four novel therapies based on that analysis. That seems, to me, better than throwing a dart at the dartboard with a blindfold on and hoping you get a bullseye. Curious if that would also be an option for you and if they even offer any more detailed at DF. We never asked when we were there.February 1, 2016 at 10:44 pm #67791 JaWillett
Thx for takimg the time to respond and for giving me some food for thought. i am just beginning to research my next alternatives, so all information & thoughts are really helpful and welcomed.
StanFebruary 10, 2016 at 2:49 pm #67792
My medical team @ Dana Farber has advised me that my PD1 immunotherapy infusions are going in the wrong direction as my latest scan shows larger nodules. So, with poor results in the immunotherapy arena, I have opted to join an experimental Phase II clinical trial testing the effectiveness and side effects of Glembatumumab vedokin (CDX-011 or “Glemb”) in treating advanced stage melanoma. The previous Phase I trial combined breast cancer and melanoma patients.
Glemb consists of an antibody attached to a cell-killing drug, MMAE, which attaches to a molecule called gpNMB that is located on the cancer cell and releases the MMAE inside the tumor cell, which in turn causes the cancer cell to die.
There may be a greater chance of more side effects, but based on my history, a change in treatment direction, is necessary. Final screening is Friday and initial 90 minute infusion (& every three weeks thereafter) will take place this Wednesday.February 10, 2016 at 3:47 pm #67793MathewRParticipant
Stan, I know that it is always disconcerting to change treatments. Best of luck with the trial.February 10, 2016 at 4:08 pm #67794 Stan,
Please keep us posted how that trial goes. I have heard of the one agent. Also, my latest interest is testing for NRAS and other mutations if you are BRAF neg. I think there is a subset of patients that aren’t responding to PD1 sadly and there must be an answer to that as well. Good luck and hope you get some good skiing in, we just had 6 inches of powder here in PA but I’m done with it since the 3 feet have yet to melt.February 24, 2016 at 11:19 am #67795
My only side effects on new treatment so far are rashes, redness & itchiness all over my body. This was not unexpected. Clinical team put me on a prednisone taper yesterday and that seems to provide some immediate relief. My first scans are scheduled for March 29th. I hope all of you are doing well.February 28, 2016 at 6:25 pm #67796kylezParticipant Stan, hope Glemb gives you some good results. I’ve thought many times that, at least from a patient’s point of view, there was some point where the current “hot” treatment, like PD1, was unproven. And patients signing up for a PD1 trial, may not have had the idea that it was promising. So I hope that’s the case for Glemb too.
Catherine, in 2011 UCSF sequenced one of my samples and found an NRAS G12A mutation. Apparently that’s one of the NRAS mutations, along with a few others, that’s considered a possible driver.April 1, 2016 at 1:30 pm #67797
I am pleased to let you know that my initial brain scan last week was clear and my body CT scans on Tuesday showed no progression. First time in at least a year with completely positive results. The side effects from Glemb are a bit more prevelant in the form of rashes and nausea and some vomiting, but treatable for sure. My clinical team also reduced my doseage to alleviate the chemo type side effects as they have found that the efficacy of the treatment still works on the lower doseage. My step into the unknown has so far been rewarded and I will keep you up to date. Infusions every three weeks, but no more scans until May 10th.April 1, 2016 at 2:59 pm #67798MathewRParticipant Stan, great to hear your news–thanks for posting!April 1, 2016 at 3:04 pm #67799gvesenkaParticipant Thanks so much for the update, Stan. It’s so good to hear about your positive results from this trial, one I also considered. Wishing you continued success!
GwenApril 1, 2016 at 3:09 pm #67800
Absolutely wonderful news. I would definitely like to know more about this trial.April 2, 2016 at 3:13 pm #67801kylezParticipant Awesome news Stan. Knocking on wood.April 21, 2016 at 3:31 pm #67802 My 4th infusion was this past Tuesday along with latest scans last week all resulting in no progression with reduced side effect since my levels were reduced. Next scans will be mid May.April 21, 2016 at 8:17 pm #67803
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