Who can give me some info on pembrolizumab? Has anyone tried it? Or on it currently?
I have been taking pembrolizumab infusions since last August every two weeks at UCSF. I am in a clinical trial for all kinds of cancers. The only qualification is that your tumor tests PD-1 positive. My tumors, which are in my lungs, are steadily shrinking and are not picking up glucose on the scans. There are very few side effects: fatigue and arthralgia. My appetite decreased and I lost 20 pounds. Hurray! Pembrolizumab is working on everyone in the trial. The sixth floor at UCSF is a very happy place. We all have hope now. This drug is the “magic bullet” you are looking for, but you have to be PD-1 positive.
Wow, great news. Thank you for the reply.
I live in England so the clinical trial isn’t accessible here BUT my onc feels that he may be able to give me the drug as it is licenced for melanoma, so he is looking into it for me.
I have been taking pembrolizumab infusions since last August every two weeks at UCSF. I am in a clinical trial for all kinds of cancers. The only qualification is that your tumor tests PD-1 positive. My tumors, which are in my lungs, are steadily shrinking and are not picking up glucose on the scans. There are very few side effects: fatigue and arthralgia. My appetite decreased and I lost 20 pounds. Hurray! Pembrolizumab is working on everyone in the trial. The sixth floor at UCSF is a very happy place. We all have hope now. This drug is the "magic bullet" you are looking for, but you have to be PD-1 positive.
Hi. I requested to be your friend on this site. I am so excited to hear about your and others success with keytruda. I was to start a trial also but my tumors started to bleed. I am currently on votrient to shrink them down if possible and then perhaps they will accept me in the trial. The tumors I have are extremely large. I wondered did it affect your lungs? I was told that at first the drug attacks the lungs and can cause infection, dyspnea, additional problems with the lungs? I was also told after the initial inflammatory response of the lungs, then things settled down and the tumors in the lungs and elsewhere started to respond to treatment. Was your journey with the drug rocky in the beginning? Thanks for any input you can share! Looking forward to more time to talk with you. Debra.
After 5 months I developed pneumonitis (inflammation)and had to take prednisone for five days. Then I was back on the Keytruda. I didn’t have symptoms,just a little more fatigue than usual. A person can have a normal life on this drug. I’m happy to discuss anything with you.
Do either of you suffer symptoms from the mets themselves? If so what does it feel like? I have had two thoracotomy operations 6 months ago so it’s hard for me to tell where the discomfort is coming from
We are going for an physical for this trial on Thursday. Very excited.
The ASCO conference is June 1, and there will be a presentation on a trial for sarcoma. You can read the abstract, a summary, online. Where is your trial located? You will see scan results in six weeks from your first injection.
Congrats to both of you, Kelly and Cheryl. This is all so exciting for us all. A little update on me. I stopped Votrient 4/28 because of progression with lung mets. So my oncologist referred me to the Ketruda trial sponsored by SARC at U of M. One month latter and I still don't have any appointments set, no phone call NADA. Although I have called the oncologist office twice with a be patient and were still evaluating patients response from them. I'm having anxiety big time over this, I just want to get started. Kelly, are you going to Ann Arbor or Pennsylvania? Cheryl, I looked at your profile and I would like to ask do you have Synovial Sarcoma? or do you have more details about responses from Sarcoma patients in your particular study?
I have thyroid cancer that metastasized to my lungs. There has been no one who survives this stage, so I was desperate for a miracle. My clinical trial has about 20 cancers; all of us are showing progress, including the sarcoma patients. I go up to UCSF next Monday and will ask specially about the sarcoma patients. I did not stop calling–everyday I called the trial coordinator. It took a week. Then I had to get my tumor tested. That took almost three weeks because Cedars Sinai is fairly dysfunctional. The trials of Keytruda near me weren’t interested in thyroid cancer. I think every trial wants sarcoma patients. If UCSF hadn’t called me back, I would have driven up there and confronted the coordinator. Be persistent–it’s your life! Have a second choice of where else you might try. Search “Clinical Connections” on the Internet–search word pembrolizumab.
Thank you so much for that info today, you have renewed my vigor to survive! I was a bit deflated along with many family members today when I found out that I am #2 on a waiting list for the Keytruda trial. I was like a dear in headlights when the study coordinator told me this "not knowing what she even meant by a waiting list" And this means that if two people don't qualify for any reason I would be in the study???? Well,all it means to me is that they have wasted my time and I will be on to other studies. I apologize for venting a little.
I was told the same kind of excuse. Has your tumor been tested for PD-1 positive? Apply to as many studies as you might be able to get to. Some people in the melanoma trial are getting it covered by Anthem Blue Cross.
I suspect in the next week you will have moved up and be in the trial.
In the following article, Dr. Wilky suggests synovial sarcoma is one of the sarcoma subtypes for which pembrolizumab showed promise in the SARC028 phase II trial:
The results of the trial were presented at ASCO and don’t look that impressive for synovial sarcoma. It looks like the best response for synovial sarcoma was no progression of disease at 8 weeks for 3 patients out of 10: