Forum Replies Created

Viewing 15 posts - 1 through 15 (of 155 total)
  • Author
    Posts
  • in reply to: Expanded Access Program for MK-3475 Opens TODAY! #63788
    NYKaren
    Participant

    I am seeing my doc at 8:30 tomorrow morning. I just figured out that it’s smart to have blood drawn the day before (today) since my labs don’t always show up the same day.

    I know that NYU has a Merck PD1 clinical trial, so I’ll let you know what she says. (once it went to phase 2 trial, we were too afraid of chemo arm, and I’ve been dealing w/brain mets, for me to be without medicine, so I’ve been on tafilnar for 7 months and combo for 3) Tafinlar was a very dramatic improvement, MEK not so much, but seems to be holding me steady.

    fingers crossed,

    Karen

    in reply to: Trial to consider.. for braf positive #63518
    NYKaren
    Participant

    Thanks, Kyle.

    I did post this last night, but maybe not…

    Yes that is correct trial. Have you heard anything about it?

    Karen

    in reply to: Trial to consider.. for braf positive #63515
    NYKaren
    Participant

    Hi Catharine, I posted about a Pan-RAF trial about 5 or 6 posts down. Didn’t get any replies… Do you know anything about it? I’m on the combo, and while it seems to be keeping my brain clear. (MRI on Tuesday–but I’m not exhibiting any tell-tale signs) my skin is still a mess–maybe it only works on the inside, lol.

    I was asking about this trial because Dr. Pavlick mentioned it as a possible alternative if the combo fails and until PD1 is approved. The # is MLN2480 on clinicaltrials.gov.

    Thanks,

    Karen

    in reply to: Update,question? #63478
    NYKaren
    Participant

    Hi Mary Sue,

    I had Yervoy twice with no problem from ins. Co. It was about a year apart.

    Take care,

    Karen

    in reply to: BMS PD1 Trial possibly recruiting #63247
    NYKaren
    Participant

    That’s a great idea to check out. I kinda forgot about it today. Thanks & Happy New Year, Catherine.

    Karen

    in reply to: BMS PD1 Trial possibly recruiting #63245
    NYKaren
    Participant

    It also says “No prior treatment for 8 weeks.” I’m on the BRAF/MEK combo–after 8 weeks my brain mets are bound to come back! I’ve had gamma knife on 14 and 17 mets. Not fun. This is so frustrating! I just had a clear MRI, but last night noticed a new flat black met on my scalp. Ugggg!

    I’m just scared! If the combo fails me, I’ve tried everything else: Ipi twice, radiation, chemo, IL2, Zel…sorry to hijack your post.

    Karen

    in reply to: Decision Time Once Again #60493
    NYKaren
    Participant

    Stan, I had the exact same situation–the prednisone did nothing except give me adrenal insufficiency– the second Remicade dose did the trick, as I hope it will you.

    Best wishes for a wonderful Christmas and may 2014 be great for all of us.

    Karen

    in reply to: brain mets feeling defeated #63152
    NYKaren
    Participant

    I had gamma knife twice…

    Since I ALSO had Ipi, I know that you’re allowed up to 7.5 mg. of prednisone/day…recovery time for gamma knife is next to nil…If my procedure hadn’t been so late in the day I would have gone to work the very next day.

    Just an idea to think about.

    Good luck, please let us know what you decide!

    Karen

    in reply to: Zelboraf / IL-2 trial advice #63132
    NYKaren
    Participant

    Hi everyone. Everything status quo with me…starting Tafinlar/Mekinist (sp) (adding Men to the Taf)

    I just want to add one thing…when I did IL-2 at Yale New Haven, they have a beautful unit dedicated to that treatment, not ICU. They do check on you all the time, but just so ya know.

    The docs there are top-notch. And just like everyone says, it’s a very tough regimin to go through, but you start feeling better just about as soon as your IV is removed.

    Everyone’s different. Many say that Ipi is easy, for me I had Colitis and needed Remicade (2 doses) to get over it. Also developed adrenal insufficiency. As they say in the old country, Oy Vey!

    Happy Holidays to all, and Here’s to Beating the Beast in 2014!

    Karen

    in reply to: Please help! Pain management in case of brain tumors #62779
    NYKaren
    Participant

    Hi there,

    I have been using the Fentynl patch for several months. I have had brain tumors (had gamma knife twice).

    Hope this helps,

    Karen

    in reply to: Is anyone aware of Expanded Access or Early Access Program? #62471
    NYKaren
    Participant

    Hi Sara,

    I progressed with brain mets after 6 months on Zelbarof.

    I am in the US, and my mail-order pharmacy has sent me two deliveries of Tanlifar.

    Someone in my doctors’ office said “are these pharmacies really that dumb”?

    It scares me that they’re going to catch on!

    Karen

    in reply to: Please Read: Interesting and sadly true #62482
    NYKaren
    Participant

    Hi, Pat,

    This article really resonates with me. I received Yervoy soon after it was FDA approved.

    I honestly didn’t realize how lucky I was to be treated at Sloan Kettering, by an onc who had been part of the research and clinical trial process for the drug. My first onc was at another hospital, and he told me it was impossible that I could have had Mel again only 3months after he removed it. Needless to say, I never saw him again!

    Unlike many, I had major gastro issues, and one day during an appointment, we were discussing how many small-town providers, (for lack of a better word) who were not familiar with melanoma or Yervoy, really didn’t know how to treat those and other side-effects. He said he was returning phone calls well into the night and on Saturdays trying to get those providers educated.

    Take care,

    Karen

    in reply to: Decision Time Once Again #60472
    NYKaren
    Participant

    Hi Stan,

    Since I just lost an entire post, I just wanted to let you know that I am still being weaned from Dex for Gamma Knife. My Onc ( Dr. Anna Pavlick, NYU Hospital) and I were pretty worried about the prospect of chemo if I tried the Merck Phase 2, PD1 trial, so she decided to try Tafilnar.

    You can take it while on steroids, it’s FDA approved, and my mail-order pharmacy doesn’t say anything about dabrafenib and Menkist not being approved together.

    FYI, I had a huge met in my ear… couldn’t hear a thing, and the head/neck surgeon was talking about enlarging my canal from pinkie-sized to men’s thumb-sized. Within a month of the Tafilnar, it’s resolved about 80-90%, and other scalp/face stuff is resolved. Going for MRI on 9/30, with CT scans soon after.

    I don’t know what Tafilnar would do regarding your eligibility for trials, but perhaps it’s worth a discussion with your onc.

    Take care,

    Karen

    in reply to: Checking in #62447
    NYKaren
    Participant

    Thanks so much, Dick.

    I really appreciate your support.

    BTW, Probably six months ago, i erroneously posted that the trial drug (whatever the iterations of Trafilnar were) were having side effects, you told me that you didn’t think that was so. Boy am I happy to hear you were right, at least for me.

    Since I can’t sleep, when my boss emailed me at 7:30 a.m, i called him back and we had a great conversation. I think he was surprised at how clearly I was speaking, because he said “boy you sound great, when are you coming back?” I was very happily pleased. My only limitation will be no driving for a few-several months (I work in the greater NY area), and he said not to worry, we’ll work it out.

    I have driven since I was 17 years old, but I do find the thought scary–having a seizure

    while driving–G-d forbid

    Take care,

    Karen

    in reply to: Checking in #62445
    NYKaren
    Participant

    Oh yes, still not working, probably about 7-10 days till I can go back. Very mixed feelings, afraid I won’t remember how to do anything!

Viewing 15 posts - 1 through 15 (of 155 total)