Merck PD1 - still a MIRACLE Drug!

Posted By
7/9/2012 1:22pm
View other posts by
Activity
Replies: 11

Hi Everyone,

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 thisMerck PD1 drug is very impressive.

I hope that this information on my experience with Merck PD1 gives you hope!

Wishing everyone a NED status.

Candi

Very happy for you to be NED. 

My husband just finished IPI and we don't know yet if it worked.   His oncologist wants to  wait one more month before ordering a CT scan.  I'm concerned that the treatment is not working as the visible nodules on his leg are not shrinking.  My husband's primary tumor was negative for B-RAF and C-Kit.  Do you know if he would be eligible for the PD1 drug given that his tumor was negative for these mutations? 

Any information you have related to this issue would be greatly appreciated.

Wishing you the best for the future.

Sigrid

Hi Lucassi,

PD1 is an immunology drug.  You do NOT  need a Braf or Ckit  mutation for the drug to be effective. The drug does not attack the melanoma cancer/tumor. The drug stimulates your immune system to kill the cancer

Wishing good luck to your husband with IPI.

Candi

Candi, so happy to hear of your continued success.  my first 12 week scans on Merck anti-pd1 showed over 30% tumor reduction.  I feel better, less pain in my rib mets. I love it when the doctor comes in smiling.  Where are you doing the infusions?  Take good care. Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

Robert,

 

I am getting my infusions in San Antonio,Texas.

What side effects are you getting?? Most recently, I started to get a mild rash.

When are your next scans? Please keep us updated with the results of your scans.

I hope your next set of scans show that you are NED.

Candi

Hi Candi,

I had 12 week scans and then 16 week scans last week.  The 4 week followup was to verify the results of the 12 week scans.  My next scans are in 12 weeks.  My side affects have been teh bumpy rash on my upper chest and shoulders, not itchy, just bothersome.  I also have bone and joint pain periodically, sometimes I feel like it's arthritis in my wrists which I never had before.  My rib mets still hurt occasionally, but, all in all, I'm feeling pretty good.  I'll share my results as I get them.

Take care,

Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

Robert,

Good luck with the results of your scans. I know waiting is tuff. Has your doctor or study nurse indicated how other patients are doing? How many patients are in your trial?

Candi

Candi,

I was the first to hit the 12 week scans, 1 other person has been scanned and had regression too.  Others are getting scans this week.  I believe there are 4 that had not done IPI and another 4 that had done IPI first.  I was told there were 60 seats worldwide before they added more seats for people who had done IPI.  

Robert 

The circumstances of our lives have as much power as we choose to give them. David McNally

Hi Robet,

How were the results of your 16 week scans?  I hope that you are still responding. I will have my 36 weeks/9 month scan on August 28th.

You mentioned in one of your post that there were 8 people in the Merck trial at UCSF. Have you heard anymore how these patients did on their scans.

Wishing you a NED status on your next scans.

Candi

Dear Candi,

Great news about your recent scans!!  Woo hoo!!!  Good News :)

A few questions -  Where are you having your infusions?   When did you start this trial and how did you get in? Did you have thyroid issues before starting?  Did you have any treatment previous to anti-PD1 (IL2 or Zelboraf)?  You don't have any information in your profile, and I am very interested in finding out as much as I can about anti-pd 1 and its side effects (which seem pretty tolerable for most).  It appears as if it might be the "golden ticket" many are searching for.  Keep us updated (it's MK3475, right?).  Continued success and clear scans!!  God Bless.

Thanks,

Bridgette (Jeff's Mom)

Briggette,

 

I started my infusions in December 2011 in San Antonio, Texas.

To get accepted into the trial, I met the pre-screening criteria and inclusion requirement, including having a biopsy done on one of my tumors.

Prior to taking the PD1 drug, other treatments were leukine  and temador. Also had four surgeries.

I had NO problems with my thyroid prior to taking PD1 trial. My doctor told me that my diminished function of my thyroid was cleary from taking the drug. Other patients are having thyroid problems, joint & bone pain, and rashes.

It is my understanding that there is a waiting list for this trial:

http://clinicaltrials.gov/ct2/show/NCT01295827

How is your son doing??? I wish him a well on IPI.

Candi

Great news, congratulations on your hard earned status!