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Viewing 15 posts - 61 through 75 (of 101 total)
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  • in reply to: Decision Time Once Again #60470
    gostan
    Participant

    Today’s trip to DF has me continuing down the same path. I guess I am lucky that these things inside me do not appear to be expanding or growing rapidly. So, Updated CT Chest/Abdomen/Pelvis scans are now scheduled for two weeks out. As long as leisions continue to be as slow-growing as they have been to date and assuming that the next brain scan is clear, then, plan will then be to begin the BMS combo trial sometime in middle of September.

    in reply to: Very promising new drug trial – Genentech/Roche ADC #60650
    gostan
    Participant

    Jonathan. I sincerely hope that your responses are all positive. And, certainly keep us all up to date. And let’s hope that with positive results, that this will open up at other cancer centers.

    in reply to: Decision Time Once Again #60468
    gostan
    Participant

    Second SRS procedure was completed today. I never would have thought that these seem to become fairly normal. Only another 6+ weeks to next brain rescan.

    I am really looking forward to reviewing all choices on Tuesday with my oncologist.

    in reply to: Merck approval from FDA in 2015 #62035
    gostan
    Participant

    Unfortuntely, Merck is under huge investor pressure. They spend $8 billion on R&D but newly appointed head of R&D Roger Pearlmutter has had his budget cut and along with federal sequester cuts, this 2015 FDA approval date is more of a reality than just a PR spin. It really sucks for all of us, but there is not much we can do about thiis other than investing in Merck & BMS stocks in order to keep them investing in future cures.

    in reply to: Decision Time Once Again #60467
    gostan
    Participant
    in reply to: Nivo/IPI combo trial? #61933
    gostan
    Participant

    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.

    in reply to: Decision Time Once Again #60465
    gostan
    Participant

    I will be seeing Dr. Hodi a couple of days after finishing the latest SRS in order to review and explore all treatment options/choices. I am certainly not very comfortable just letting time go by treating these brain mets one by one and not yet treating my main lung and abdominal mets. And, I am BRAF positive with the V600k gene.

    in reply to: Decision Time Once Again #60462
    gostan
    Participant

    So, on Friday I was in the clear, but when the final report came in by Monday, one new brain met was then discovered. Second round of SRS now scheduled for a week from tomorrow and then a visit to onc to figure where to go from there. I guess I am looking for a backup plan for my former backup plan.

    in reply to: new to stage IV #61907
    gostan
    Participant

    Ursula, it is difficult for me to imagine your angst with 3 young children and your having to deal with this awful disease. But as Celeste notes, the results with the ipi & nivolumab trials are really great. And you are in great hands and minds at S-K. Dr. Hodi, my onc @ Dana Farber is convinced that over the next several years that these new therapies will translate into long term maintenance of our melanoma……and this was not even a thought 5 years ago. Best of luck with your rescans moving forward.

    in reply to: Decision Time Once Again #60460
    gostan
    Participant

    Thx Catherine & LynnLuc

    Thx for your responses to my query. My paperwork is all typical consent forms that describe the research study & plans and all side effects, but fails to describe this type of criteria. My own research shows 30 days to be the norm. I hope to receive the answer from the clinical study coordinator nurse tomorrow.

    in reply to: Decision Time Once Again #60457
    gostan
    Participant

    I had my 6 week post-SRS Brain MRI this morning at DF and the good news is that nothing new has shown up – just the normal post-surgical changes.

    Based on this good news, I had assumed that I would just be immediately rescheduled for updated CT Scan etc. necessary to be able to start my postponed BMS Phase 2 Nivolumab/Ipilimumab trial, but I will have to wait for Dr. Hodi’s office to call me on Monday as they need to check on some screening criteria regarding how long I have to be off radiation prior to starting the trial. After all of this time, with this good news and all, waiting another weekend should not be too difficult. And, of course, the other good news of the day is that my jury duty for Monday was cancelled. :D

    Does anybody have any experience with a BMS study and how long must one generally be removed from brain radiation before being able to join study?

    in reply to: Partial response with PD-1 #61762
    gostan
    Participant

    Catherine

    I have sworn off the alcohol even though my clinical trial has been delayed while I wait for my brain rescan. It has been a difficult couple of months. No booze :P and waiting for 6 weeks to pass in order to have another brain MRI after SRS. It certainly makes sense that alcohol would affect ones immune system. Heck, if this is really true, TJ might have already got to a 50% reduction, but I am sure that he was not given this piece of information about alcohol. TJ, maybe when we are both NED, I will come to Florida and buy you a drink.

    in reply to: Partial response with PD-1 #61760
    gostan
    Participant

    TJ

    I have followed your story on your blog and this is great news. Here is hoping that the mets continue to shrink as your treatments continue. I have found it interesting that your doctors still allow you to have some alcoholic adult beverages as I was advised at Dana Farber that there could be no alcoholic beverages during the BMS phase 2 ipi/anti-pd1 trial because alcohol reduces ones immune system. Has anybody else been given this directive?

    in reply to: Good Advice from "Patient #1" melanoma blogger #60904
    gostan
    Participant
    in reply to: brain MRI #61633
    gostan
    Participant

    Abby

    Every time I do a global search on “waiting” on this forum, the number of posts on “waiting” keeps increasing on a daily basis. Rest assured that you are not alone in your waiting as many others here are waiting with you and wishing you good results.

Viewing 15 posts - 61 through 75 (of 101 total)