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January 6, 2014 at 4:18 pm #21733
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
MarthaJanuary 6, 2014 at 5:20 pm #63303Catherine PooleKeymaster
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.January 7, 2014 at 12:19 am #63304Dick_KParticipant
Sorry I won’t bump into you again at NYU, BUT VERY HAPPY it is for this reason.
DickJanuary 7, 2014 at 4:23 am #63305JonathanParticipant
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.
JonathanJanuary 8, 2014 at 1:37 pm #63306
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,
MarthaJanuary 8, 2014 at 11:39 pm #63307BrendanParticipant
Great news, Martha. Thanks for sharing. Keep it up.
BrendanJanuary 17, 2014 at 8:37 pm #63308StevenParticipant
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.
StevenJanuary 18, 2014 at 2:09 am #63309
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?
ps..ok Dick..your turn!!January 18, 2014 at 1:22 pm #63310Catherine PooleKeymaster
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!January 18, 2014 at 3:42 pm #63311
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
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.January 18, 2014 at 7:03 pm #63312StevenParticipant
Thank you both for the insight. I think I will post my question to the whole board.January 20, 2014 at 5:31 pm #63313 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.
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