Anti-PD-1 clinical trial, first scan results

feistyD

Hi everyone, I just got the results of my first set of 12-week scans after 4 treatments of MK-3475 (anti-PD-1 immunotherapy clinical trial drug). And the winner is....me! Almost seventy percent shrinkage in my tumors! No side effects-in fact, my hair is growing back. A thirty-minute infusion with no pre-meds! I just get up and go home, no nausea or fatigue. In fact, I feel like my old, pre-stage IV NSCLC self. The trial is expanding, so seats may be opening up. I LOVE this drug.

dennycee

Congratulations feistyD
Thank you so much for putting yourself out there with the trial. Remember, the chemo continue s to work for a couple of weeks after you are done - knock that cancer outta there Did you have to drive far? Did you have to have mutation testing?

feistyD

dennycee said:

Congratulations feistyD
Thank you so much for putting yourself out there with the trial. Remember, the chemo continue s to work for a couple of weeks after you are done - knock that cancer outta there Did you have to drive far? Did you have to have mutation testing?

The clinic is in West Los
The clinic is in West Los Angeles near UCLA, only about 20 miles from my house, as the crow flies. But the freeways and surface streets are almost always jammed, so it takes me over an hour (small potatoes- I don't even notice, because I'm so happy to be in the trial). Some patients are coming from Alaska, Hong Kong, even West Africa, so I can't complain. No mutation testing, but I had to have a tumor that could be biopsied, an HIV test, a Hep C test, a brain MRI, and no autoimmune disorders. I know my tumor expresses PD-L1, and that seems to be key to having a good response (don't ask me what it means, though- I'm an English teacher, not a biochemist!) If all goes well, I'll be on the trial for two years, with treatments every three weeks. The response has been shown to be durable, so it should last even after the treatments stop. That's all part of what the trial is about! For me, there was never a question about signing up for this- I was more worried I wouldn't get in. I was really out of options. Now I have hope!

kmurillo

feistyD said:

The clinic is in West Los
The clinic is in West Los Angeles near UCLA, only about 20 miles from my house, as the crow flies. But the freeways and surface streets are almost always jammed, so it takes me over an hour (small potatoes- I don't even notice, because I'm so happy to be in the trial). Some patients are coming from Alaska, Hong Kong, even West Africa, so I can't complain. No mutation testing, but I had to have a tumor that could be biopsied, an HIV test, a Hep C test, a brain MRI, and no autoimmune disorders. I know my tumor expresses PD-L1, and that seems to be key to having a good response (don't ask me what it means, though- I'm an English teacher, not a biochemist!) If all goes well, I'll be on the trial for two years, with treatments every three weeks. The response has been shown to be durable, so it should last even after the treatments stop. That's all part of what the trial is about! For me, there was never a question about signing up for this- I was more worried I wouldn't get in. I was really out of options. Now I have hope!

Clinic
Hello,

By any chance is it called The Angeles Clinic? My mom is a patient at that clinic. We were just informed about the test trial for MK-3475. If you don't mind me asking you a couple of questions about the treatment since you have started already. Thank you!

feistyD

kmurillo said:

Clinic
Hello,

By any chance is it called The Angeles Clinic? My mom is a patient at that clinic. We were just informed about the test trial for MK-3475. If you don't mind me asking you a couple of questions about the treatment since you have started already. Thank you!

Yes, I am at the Angeles
Yes, I am at the Angeles Cinic, and I love it. I'll be happy to answer any questions. If she qualifies for the MK-3475 trial and can get in, she is very lucky. I believe it is saving my life.

Smokey D Bear

feistyD said:

Yes, I am at the Angeles
Yes, I am at the Angeles Cinic, and I love it. I'll be happy to answer any questions. If she qualifies for the MK-3475 trial and can get in, she is very lucky. I believe it is saving my life.

AntiPd1 MK3475 Trial

Hi!

After a failed round of Yervoy treatments, I was lucky enough to get my 82 year old father into the AntiPd1/MK3475 trial at UCLA effective March 21st, 2013. Dad has advanced melanoma lung cancer, with nodules in both lungs. He was/is a non-smoker and the cancer started on the top of his head. Two weeks following his 1st infusion of the MK3475 he began running a fever, suffered diarrhea and losing lots of energy. His last blood draw showed that his hemoglobin count was down to 8.2. Dad had a blood transfusion and the counts went up to 11.1. Dad’s energy levels are still very low and he is still having low fevers in the morning and night, controlled with regular Tylenol.

Does anyone else on this program have similar reaction to the AntiPd1/MK3475 trial? Is there other discussion boards dedicated to this Pd1 treatment?

Thanks and god bless!

 

feistyD

Smokey D Bear said:

AntiPd1 MK3475 Trial

Hi!

After a failed round of Yervoy treatments, I was lucky enough to get my 82 year old father into the AntiPd1/MK3475 trial at UCLA effective March 21st, 2013. Dad has advanced melanoma lung cancer, with nodules in both lungs. He was/is a non-smoker and the cancer started on the top of his head. Two weeks following his 1st infusion of the MK3475 he began running a fever, suffered diarrhea and losing lots of energy. His last blood draw showed that his hemoglobin count was down to 8.2. Dad had a blood transfusion and the counts went up to 11.1. Dad’s energy levels are still very low and he is still having low fevers in the morning and night, controlled with regular Tylenol.

Does anyone else on this program have similar reaction to the AntiPd1/MK3475 trial? Is there other discussion boards dedicated to this Pd1 treatment?

Thanks and god bless!

 

I am still in the MK 3475

I am still in the MK 3475 trial and doing well. After 17 infusions (about one year) I haven't had any major negative reactions, just some itchy red spots. However, I have been in contact with someone else who had a bad reaction to the drug- she is also at UCLA. I don't know if age or overall general health has anything to do with it, but I am significantly younger (57) and besides the stupid cancer, my overall health is very good. I have started an email group for anti-PD-1.  You are welcome  to join, but only a couple of people are active on it. 

Smokey D Bear

feistyD said:

I am still in the MK 3475

I am still in the MK 3475 trial and doing well. After 17 infusions (about one year) I haven't had any major negative reactions, just some itchy red spots. However, I have been in contact with someone else who had a bad reaction to the drug- she is also at UCLA. I don't know if age or overall general health has anything to do with it, but I am significantly younger (57) and besides the stupid cancer, my overall health is very good. I have started an email group for anti-PD-1.  You are welcome  to join, but only a couple of people are active on it. 

MK/PD1 Group

Hi FeistyD!

Glad your progress within the program continues to be a positive one. I would love to join your email group and share information we receive concerning the program. Here is my email: jeffrey.sutton@live.com  .

Could you please share the side effects that your friend had while in the UCLA program?

Our oncologist @UCLA is Dr. John Glaspy and the Clinical Research Coordinator is Christine Kivork. Everyone within the UCLA program including the nurses and infusion staff have been awesome to my father! It’s now up to much bigger powers if the drug will help my dad. He had his second infusion yesterday, we are crossing our fingers/toes!

Thanks for your help!

 

Twocats

Phenomenal !!

I am really fortunate to have been accepted for the mk3475 clinical trial. I felt pretty much out of options. Up to this point, nothing worked. I'd been through 2 chemo types and one non chemo treatment series all with very difficult side effects and the cancer just grew and spread. I'm pd1 negative stage IV NSCLC. After 8 weeks of infusions every 2 weeks, the CT showed overall tumor shrinkage of about 70% in all areas. I felt so much better after the 1st month that I thought it just had to be working.  Most of the pain I'd had stopped, I started breathing much better, my appetite came back and I stopped spending most of my days dozing.  I'm looking forward to continued good results. It feels like a miracle.

dennycee

Twocats said:

Phenomenal !!

I am really fortunate to have been accepted for the mk3475 clinical trial. I felt pretty much out of options. Up to this point, nothing worked. I'd been through 2 chemo types and one non chemo treatment series all with very difficult side effects and the cancer just grew and spread. I'm pd1 negative stage IV NSCLC. After 8 weeks of infusions every 2 weeks, the CT showed overall tumor shrinkage of about 70% in all areas. I felt so much better after the 1st month that I thought it just had to be working.  Most of the pain I'd had stopped, I started breathing much better, my appetite came back and I stopped spending most of my days dozing.  I'm looking forward to continued good results. It feels like a miracle.

Rock on!  Hoping for the best

Rock on!  Hoping for the best possible outcome.