Home Forums Melanoma Diagnosis: Stage IV Pdl trial..6weeks scans

  • This topic is empty.
Viewing 12 posts - 1 through 12 (of 12 total)
  • Author
    Posts
  • #21733
    rochelle
    Participant

    Greetings,

    I just received my results from my six week scans while on the Pdl trial @ MSKCC…though small, I have had an overall reduction of tumors…no new lesions and no distant disease.

    Now I’m going in for infusion #4 :)

    Martha

    #63303
    Catherine Poole
    Keymaster

    Martha,

    That is wonderful news!! thank you for sharing it with us. I just posted a new PDL trial opening that is combined with braf drugs and for the BRAF neg, the Mek drug. I know your trial is fully accrued.

    #63304
    Dick_K
    Participant

    Martha,

    Sorry I won’t bump into you again at NYU, BUT VERY HAPPY it is for this reason.

    Dick

    #63305
    Jonathan
    Participant

    Hi Martha,

    That sounds good to me!!!! Very glad to hear this. Great New Years present! Since it’s immunotherapy, you can hope this continues, right? Break out the bubbly.

    Love,

    Jonathan

    #63306
    rochelle
    Participant

    Dick…I’m sorry too..was quite an emotional transition going from NYU to MSKCC…I’m happy to hear of your continued success :)

    Jonathan..I have heard (though who knows if this is an urban myth) that reduction/response could indicate a long term trend. I just take this one day at a time…and today is a great day…let’s catch up soon!

    Stay warm everyone,

    Martha

    #63307
    Brendan
    Participant

    Great news, Martha. Thanks for sharing. Keep it up.

    Brendan

    #63308
    Steven
    Participant

    Hi Dick and Rochelle

    I am at MSK and considering switching to NYU (Pavlick). I have been treated by a neurosurgeon at NYU w gamma knife, may need it again, and may combine w Ipi. Any insight on the nursing team at NYU?

    I suppose Ipi is Ipi, and the real help is a competent nursing team that is always available for questions when one panics and has side effects.

    Thanks.

    Steven

    #63309
    rochelle
    Participant

    Hi Steve,

    I have only been at MSKCC for a couple of months and I was @ NYU for 5 years. That being said, I have made the adjustment to MSK and I think I can give you an impartial response (well maybe :) Anyway, I think the “customer service” at NYU is outstanding. I always tried to fly under the radar and did not call my team unless it was absolutely necessary, but the response to any concern, side effect, possible new lesions, even when I had the “real” flu last year…every response was swift and helpful. Aside from medical support, when I was staying at Hope Lodge on W. 32nd Street, 3 of the nurses paid me a surprise visit one night just so they could see what their patient was experiencing. A couple of years ago I rode in the NYC 5 borough bike ride…one of the nurses and her husband stood on the corner of W.34 and 6th Ave to cheer me on…and just last night, I received an email from one of the nurses on my team…wanting to know how I was doing…she did not know it was the 5 year mark in time of my diagnoses…but her concern could not have been more perfectly timed…need I say more?

    Martha

    ps..ok Dick..your turn!!

    #63310
    Catherine Poole
    Keymaster

    Martha, et al,

    Some patients have told me that they had to wait 5 hours for an appt doctor at NYU and that they were still recovering from Sandy. Is that true? I am happy to hear the nursing team is top notch!

    #63311
    rochelle
    Participant

    Catherine,

    Though I have never been left to wait that long if I had an important issue…but yes, for routine visits, I have waited…sometimes long enough to know the names of the after hours cleaning crew :) (seriously)

    That being said, Sandy is still an issue but that is more with the hospital than the cancer center…and I know one of the melanoma oncs has relocated to Dana Farber and has not been replaced. If you’re not a patient patient, it makes for a hard day.

    #63312
    Steven
    Participant

    Thank you both for the insight. I think I will post my question to the whole board.

    #63313
    rochelle
    Participant

    Just want to report additional information in regards to wait times @ MSKCC vs NYU…I have been waiting four hours @ MSKCC for my PDL treatment…so I guess wait times vary no matter where you go.

    Martha

Viewing 12 posts - 1 through 12 (of 12 total)
  • The forum ‘Melanoma Diagnosis: Stage IV’ is closed to new topics and replies.