Home Forums Melanoma Diagnosis: Stage IV Anti-PD1 trial at Sloan

  • This topic is empty.
Viewing 15 posts - 1 through 15 (of 15 total)
  • Author
    Posts
  • #20915
    erinmay22
    Participant

    I’ve been a patient at Sloan for over 2 years. Tomorrow I meet with one of the trial doctors to find out about starting the anti-pd1 trial. I finished my last dose of ipi Nov 27th. Scans Dec 18th showed a lymph node still growing (I had surgery Oct 4th to remove part of my small intestine but they couldn’t get this node).

    I did Zelboraf May-Sept and Ipi Sept-Nov. Just wondering what questions I should be asking when I go in? How soon do you think they would start the trial? I know there is generally paperwork to fill out and blood work and scans. I did just have a Brain MRI Dec 7th and CT scans Dec 18th – so hopefully those are within the window and I don’t have to have them again so quickly!

    Also, anyone out there currently in Sloan’s trial? Thoughts/Comments?

    Thanks,

    Erin

    #58409
    Catherine Poole
    Keymaster

    Erin,

    Which PD1 trial is it? Merck or BMS? Is it randomized? Crossover? We can help more if you tell us a bit more about it. I think it is highly promising too~!

    #58410
    erinmay22
    Participant

    Catherine –

    Excellent questions – I had asked my doctor to let me know which trial it is. I’m assuming it’s this one listed on Sloan’s webpage (A Phase Ib Study of MDX-1106 (BMS-936558) in Combination with Ipilimumab (BMS-734016) in Patients with Unresectable Stage III or Stage IV Malignant Melanoma – http://clinicaltrials.gov/ct2/show/NCT01024231).

    I was told that everyone gets the drug. Guessing I’ll be in Cohert 6 or 7 since I’ve done ipi? Here’s hoping it does the trick! I actually had been feeling pretty great until my back decided to act up! I think all the stress finally caught up with me! Have my first acupuncture session tomorrow! Will see how that goes!

    I’ll keep you all posted!

    Erin

    #58411
    Jonathan
    Participant

    Hi ErinMay,

    That’s great you can get on the anti-PD1 trial. I’m sure it’s not the combo with Ipi – after all, you just had Ipi, and that would disqualify you. On the other hand, having one after the other is a very good strategy and may well enhance the dual effect.

    Take care,

    Jonathan

    #58412
    Catherine Poole
    Keymaster

    Good to hear from you Jonathan. So sorry about that damned interferon zapping your energy. I’m not a fan! Anyway, when I look at Erin’s trial, it seems that it had many arms to it, most including IPI and Pd1. So I guess they many put Erin in the PD1 alone arm? It is a phase 1 trial, so it is all about dosage. Erin, I would ask what arm you are being put in.

    #58413
    erinmay22
    Participant

    Jonathan – thanks so much! the trial does have several arms and 2 that are just the pd1 (you have to have had ipi within 4-12 weeks). As Catherine said it is a phase 1 trial…

    Here’s hoping ipi followed by pd1 does the trick! Oh and that I can get in to the trial!

    I’ll let you guys know!

    Erin

    #58414
    Anonymous
    Guest

    erinmay22 wrote:

    Catherine –

    Excellent questions – I had asked my doctor to let me know which trial it is. I’m assuming it’s this one listed on Sloan’s webpage (A Phase Ib Study of MDX-1106 (BMS-936558) in Combination with Ipilimumab (BMS-734016) in Patients with Unresectable Stage III or Stage IV Malignant Melanoma – http://clinicaltrials.gov/ct2/show/NCT01024231).

    I was told that everyone gets the drug. Guessing I’ll be in Cohert 6 or 7 since I’ve done ipi? Here’s hoping it does the trick! I actually had been feeling pretty great until my back decided to act up! I think all the stress finally caught up with me! Have my first acupuncture session tomorrow! Will see how that goes!

    I’ll keep you all posted!

    Erin


    Erin:

    Cohort 7 was the arm Rachel was enrolled in. The Sloan team was quite excited about this combination. I’ll be praying big time that you are accepted.

    You are amazing.

    Jeff

    #58415
    erinmay22
    Participant

    Jeff – thanks so much! I think that it’s pretty amazing after what you’ve gone thru that you still offer help and support! Thank you for that!

    Sitting at Sloan now waiting to meet the new doc. Behind schedule as usual… :) but I will say today is the lowest my pulse has been in a long time while getting vitals. Must mean I’m finally calming down again about this journey?

    Will keep you all posted! Have a great day!

    Erin

    #58416
    erinmay22
    Participant

    Update on the day. Lessons learned:

    1. I KNEW I should have packed a lunch! My appt was at 9:30. Thought I’d be done by 1 to have acupuncture done. I was taken back to a room around 11:30… doctor finally came in around 12:30. Then talked with the trial nurse and sent for blood work and EKG

    2. Dr suggested I do the Merck trial vs BMS since the Merck requires less biopsies? but they should both be the same anyway?

    3. Need biopsy STAT! So they are trying to get it done Friday and then start treatment on Monday. This is because my last CT scan was done Dec 18th – so in order to be under the 28 day limit – we need to make it happen soon.

    4. Bloodwork so far (That I see online) all looks good. My LDH is the lowest it’s been in the 2 years of being at Sloan (maybe this is a good sign the ipi is kickin in?)

    5. EKG looked good – I love the tech at Sloan… she always lets me know things look good on my EKG! and even retook it since she made me laugh during it!

    um… I’m sure there were other things to report! but that’s what’s going on in my world today!

    Will let you know how things go. Right now time for some food and relaxation!

    #58417
    Catherine Poole
    Keymaster

    All sounds great Erin. Please let us know how things are going for you and what trial you “land” in. The Merck trial is excellent too.

    #58418
    erinmay22
    Participant

    Thanks Catherine. Will let you know where I finally land. Sounds like I do have to get scanned again (since I’ll just be a few days past the 28 days since last scan). So I’ll get a CT scan Jan 16th and then first tx Jan 21st. Need to still find out when they are doing the biopsy.

    I totally feel like this is deja vu again! I had my first scans at Sloan Jan 13, 2011 to get in the ipi trial…

    #58419
    buffcody
    Participant

    Just called Dr. Chapman at Sloan yesterday about, among other things, the possibility of getting on the PD-1 trial. His nurse told me it is now not taking further patients.

    #58420
    erinmay22
    Participant

    I’m sorry to hear they said they weren’t accepting any more patients… Are you already a patient at Sloan?

    #58421
    Catherine Poole
    Keymaster

    Frank: There are many other locations for the PD1, I believe that UCLA has openings, and a few others in Los Angeles. What area of the country would work best for you? Chicago should have some openings too. I have a list, tell me where you are interested in?

    #58422
    buffcody
    Participant

    I went to Sloan for a second opinion in October and saw Dr. Chapman. I’m now considered a “patient” and am making an appointment for early February following scans at the University of Michigan. I again will want a second opinion of what my oncologist here recommends. Certainly if the scans show further metastasis and no brain mets, I would be pointing towards anti-Pd1 soon. Chicago would be the most convenient location for me, but I would be willing to go anywhere if indicated. I’m a bit ahead of the game as of today though, just preparing for next steps.

Viewing 15 posts - 1 through 15 (of 15 total)
  • The forum ‘Melanoma Diagnosis: Stage IV’ is closed to new topics and replies.