› Forums › General Melanoma Community › Merck PD1 – still a MIRACLE Drug!
- This topic has 33 replies, 5 voices, and was last updated 13 years, 4 months ago by
Candi13.
- Post
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- July 9, 2012 at 5:22 pm
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.
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
- Replies
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- July 9, 2012 at 10:43 pm
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
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- July 9, 2012 at 10:43 pm
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
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- July 11, 2012 at 4:33 pm
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
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- July 11, 2012 at 4:33 pm
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
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- July 11, 2012 at 4:33 pm
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
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- July 9, 2012 at 10:43 pm
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
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- July 10, 2012 at 4:57 am
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
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- July 10, 2012 at 4:57 am
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
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- July 11, 2012 at 4:39 pm
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
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- July 11, 2012 at 4:47 pm
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
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- July 11, 2012 at 7:20 pm
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
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- July 11, 2012 at 7:20 pm
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
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- July 18, 2012 at 9:39 pm
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
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- July 18, 2012 at 9:39 pm
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
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- July 18, 2012 at 9:39 pm
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
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- July 11, 2012 at 7:20 pm
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
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- July 11, 2012 at 4:47 pm
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
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- July 11, 2012 at 4:47 pm
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
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- July 11, 2012 at 4:39 pm
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
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- July 11, 2012 at 4:39 pm
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
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- July 10, 2012 at 4:57 am
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
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- July 10, 2012 at 5:45 am
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)
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- July 10, 2012 at 5:45 am
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)
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- July 11, 2012 at 5:20 pm
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
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- July 11, 2012 at 5:20 pm
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
-
- July 11, 2012 at 5:20 pm
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
-
- July 10, 2012 at 5:45 am
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)
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