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Viewing 15 posts - 1 through 15 (of 101 total)
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  • in reply to: UPDATES! We want to know how you are doing! #69250
    gostan
    Participant

    After a few unsuccessful forays into the difficult world of Phase 1 clinical trials and a 6 week washout respite from all treatments , where I felt like a human being for the first time in many years; my latest scans showed fairly major progression in my lungs along with some minor progression in my abdomen. After discussing this turn of events with Dr. Hodi and his team, We decided that I needed to back on the poison, or my life might be cut short. So, today I started a Venurafenib/Cobimeenib combo approach. I will report back as to how I tolerate these drugs.

    in reply to: UPDATES! We want to know how you are doing! #69247
    gostan
    Participant

    Some of you are having difficult times with difficult choices and Iencourage you all to continue to persevere through it all.

    I started the ERK last Thursday with a difficult 12 hour initial day. It took me until Sunday to gather my strength and wits to keep moving forward. My body is getting used to the new treatments and I am beginning to feel better.

    in reply to: UPDATES! We want to know how you are doing! #69240
    gostan
    Participant

    THis past week was definitely a downer. ALthough I was premeditated, I had an allergic reaction to the Gadavist MRI Contrast. Then, on Wednesday, while preparing for a conference call at work, I suffered a seizure. Luckily my RR GM called 911 and my wife. Next thing I knew, I had been transported from Grafton to BWH in Boston. Hopefully this was an isolated incident as I am now on anti-seizure meds. Unfortunately my start on ERK has been postponed, so I will not know what my treatment(s) are going to be going forward until late next week at the earliest. At least I feel back to normal today.

    in reply to: UPDATES! We want to know how you are doing! #69234
    gostan
    Participant

    I have been seeing Dr Hodi since 2008 with a 5 year respite until 2013. He referred me over to Dr. B. As she is in charge of all of the Phase 1 trials. Definitely lucky to have 2 such fine teams.

    in reply to: UPDATES! We want to know how you are doing! #69232
    gostan
    Participant

    Gwen, Dr. Buchbinder told me that there have only been 4-5 participants in ERK with two washing out.

    Catherine, the two current Braf/Mek combo trials have a hold on recruiting at DF. I will definitely keep my eyes open for the Array Pharma trial.

    Matthew, I wish my body chemistry would react well to the immunotherapy regimes. But, alas, they are not for me. Some Braf/Mek Combo treatment is likely in my future.

    I have never been in a Phase 1 trial so I will have to go into training for some 12 hr. Days at the hospital.

    in reply to: UPDATES! We want to know how you are doing! #69227
    gostan
    Participant

    Lung & Abdomen progression has caused me to be washed out of my Glemb treatment(s). As the Braf Mek combo trials at DF are not recruiting right now; in order to attempt to keep things in check, I signed releases this morning to go onto ERK (BVD523) a Biomed Valley phase 1 experimental trial. First doses tentatively scheduled for very early September.

    Overall, I feel pretty good physically under the circumstances.

    in reply to: UPDATES! We want to know how you are doing! #69216
    gostan
    Participant

    I do not post as often as I once did, but I was originally diagnosed in June, 2008 and have been Stage 4 since 2013 with various procedures and treatments over the years. Although this has been a long drawn out experience, I remain one of the lucky ones because even as treatments have given me quality of life side effects and/or failed, my melanoma has been kept relatively in check. Currently, I am in a clinical trial at Dana Farber for glematumumab vedotin as the various immunotherapies have not really worked long term for me. Some up and down side effects and the like, but so far the medical team has been successful in keeping me going with the trial as there has been no progression of my Cancer. We are all the same but we are all a bit different, so all I can offer up is to do your very best to hang in there. Luckily thre is always something new around the corner. This was definitely not the case when I was originally diagnosed in 2008.

    in reply to: This chronic disease is reawakening #67805
    gostan
    Participant

    This weeks scans showed my brain still clear and my abdomen and chest being fairly steady. So, in the big picture things are fine. However, my unusual body rash has caused a temporary hold on current infusion treatments. They have put me back on prednisone and dermatology has biopsied the rash to determine if it is drug specific or some other cause. We will recircle the wagons in 7 to 10 days.

    gostan
    Participant

    I had the identical issues all over my body. Prednisone helped temporarily, but not permanently, so I had to move on. Best of luck dealing with these awful side effects.

    in reply to: This chronic disease is reawakening #67804
    gostan
    Participant

    Yes this is the trial. We call it Glemb for short.

    in reply to: This chronic disease is reawakening #67802
    gostan
    Participant

    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.

    in reply to: This chronic disease is reawakening #67797
    gostan
    Participant

    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.

    in reply to: Update on Ipi/Nivo Combo #68011
    gostan
    Participant

    Matt

    Your saga simply amazes me. I applaud your resolve and attitude. And your story gives all of us a little inkling of what we each need to think about to stay positive. I for one intend to dwell on the positive. And I do pray to the higher power for some good news to head in your direction. You definitely deserve some.

    in reply to: This chronic disease is reawakening #67795
    gostan
    Participant

    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.

    in reply to: BRAF/Mek may be failing…already #68523
    gostan
    Participant

    This news definitely feels awful to all of us. We all hope that you & your husband can find the strength to remain strong during this trying time.

Viewing 15 posts - 1 through 15 (of 101 total)