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July 9, 2012 at 5:25 pm #20459candi4Participant
Here is an update on taking the Merck Pd1 drug since December 2011.
Starting this trial at Stage 4, with tumors on leg, chest & lungs, my “first” set of scans showed NED. My doctor could not find cancer anywhere in my body. Such a miracle for only taking this drug for 12 weeks.
Just got the results of the “second” set of scans, and I continue to be NED.
As I side note, my side effects are occasional joint pain. Also, my thyroid lost some of its function so I now takes meds to supplement my thyroid. The study nurse told me that 8 other patients are also having thyroid issues. Apparently, my side effects were also reported as side effects by BMS PD1 drug trial results at ASCO .
The study nurse also told me that many patients are showing a response. She commented that the response rate for this Merck PD1 drug is very impressive.
I hope that this information on my experience with Merck PD1 gives you hope!
Wishing everyone a NED status.
CandiJuly 11, 2012 at 5:26 am #55354Catherine PooleKeymaster
I’m very happy to share your good news. However, I am cautious to call any therapy “a miracle drug.” So far the studies have shown a good response to PD1, but it is still in study, all of the PD1 drugs, so we don’t know how it is working in a large population. I don’t like getting the hopes up of folks when it is so hard to get into these trials, with few slots and lots of prerequisites. So let’s call it hopeful but not a miracle until we know more. I hope all continues to go well for you!!July 11, 2012 at 2:56 pm #55355FeistyDParticipant
So excited to hear your news! I am on the same trial, Merck 3475 anti-PD1 (for NSCLC). I started in May, three treatments so far. I feel great with no side effects. My cough is GONE and I don’t feel anything in my lungs. I won’t know for sure how it is working until my scans in August, but at least it has given me a new lease on life and some hope, which I didn’t have before. I know it’s too soon to call it a miracle drug, but let’s all keep our fingers crossed.July 13, 2012 at 3:00 am #55356justinnvParticipant Wow Fiesty, thanks for sharing. Could you tell me was your NSCLC adenocarcinoma?
And what stage?
And what hospital are you at? Would you happen to know the NCT number of the trial?
Thank you so much.
My dad just got diagnosed with stage II or IIIa (depending on the results of the mediastinoscopy they will do at the start of his surgery on July 26 at UC Davis by Dr. David Cooke (amazing surgeon) and Dr. David Gandara (medical oncologist).
Their treatment recommendation was exactly the same as the team at Stanford, and we thought both places were amazing, but UC Davis is a 3 hour drive instead of 5 hours and without the San Francisco traffic.
-Justin in NVJuly 13, 2012 at 1:25 pm #55357FeistyDParticipant
I have a rare form of cancer (spindle cell carcinoma). I don’t know exactly what it is, to tell the truth, except the primary tumors are in my left lung. It’s not adenocarcinoma, but for the trial, it didn’t seem to matter. I am Stage IV. I am at the Angeles Clinic in West Los Angeles
It’s a great place- small and friendly. Maybe you can still find a seat in an anti-PD1 trial in Northern California. If not, I would call Dr. Hamid at AC.
There are people coming from Russia, Africa, and Alaska every three weeks for these trials- that’s how strongly they believe in this type of therapy.
The number of my trial is:
Good luck!July 13, 2012 at 2:55 pm #55358jamesaParticipant
I am hope your father’s surgery goes well.
How is your mother-in-law? Have you made any final decisions on treatment.
Please keep us posted.
My prayers go out to your family.
JamesJuly 17, 2012 at 12:25 am #55359LynnLucParticipant
I’ve been on it since Fall 2010…I also got peptides for the first 24 weeks along with the original Anti PD-1 from BMS formerly called MDX 1106…stage 4 NED for over 2 years and 3 months My thyroid is fried but I take Synthroid. BMS Anti PD-1 had some awesome reviews from ASCO in the news lately. I hope Merck is just as good!
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