MK3475 (PD1) Experiences

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5/11/2014 9:55am
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Replies: 6

Interested to hear how patients are doing on expanded access PD1.  My husband has had chemo, surgeries, radiation, Cyberknife, 2 rounds of ipi and now 2 doses of PD1.  After first dose his LDH was lower and he has been feeling better than he has in a year.  He was diagnosed in April 2013.

CBS805

2 doses of the expanded access PD1 and he is feeling better is good news for me to hear. I've really been worrying about this EAP but for me I see it as my only choice at this time so to hear good news from it is a blessing. I'm waiting on the call for when I'm supposed to start it. Either this coming week or next week but not sure yet. I'll try to update the forum how it turns out.

 

cbs805 - (5/12/2014 - 2:11pm)

We go to the Beverly Hills Cancer Center, Dr. O'Day.  John, my husband doesn't have any tumors that can be felt so we won't know for sure what is happening until his scans in July.  Hope all goes well for you.   Very grateful for this drug. 

CBS805

sweetaugust - (5/12/2014 - 9:28am)

I'm 1.5 years into MK-3475 and doing great!  I no longer have progressive disease and have almost no evidence of disease as all but one spot have cleared up.  That last bad lymphnode seems to almost be back to normal size though...so all going in the right direction.  Still working fulltime and living a basically normal life.  Feeling good and happy to be here appreciating each moment.  :)

Much luck to you!

Laurie

Anonymous - (5/12/2014 - 10:20am)

Laurie,

 

Did you ever discussed with your doctor that if you stopped the trial, then you had a recurrecnce, that you would be able to get back on the trial?

What is Merck policy about stopping the trial after 2 yrs then wanting back on the trial because of disease progression?

sweetaugust - (5/12/2014 - 11:09am)

I don't actually see my doctor again until after I scan again in mid June.  Until then, I just see my nurses for my treatments.  We will look at my scan results and then I will ask again about Mercks rules on stopping the trial after 2 years, and the ability of getting back on the treatment if it starts growing again.

Tina D - (5/13/2014 - 8:18am)

I am not in the eap, but have been in the Merck trial since end of July 2013. Have had an 83% response thus far. Feeling well most of the time aside from symptoms caused by adrenal insufficiency and hypothyroid ( side effects from this and prior treatments)... these are easily treated with meds. 

Tina