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May 11, 2014 at 1:57 pm #21962Cbs805Participant
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.May 11, 2014 at 5:01 pm #64325Catherine PooleKeymaster that’s great, I know many patients who are now stable on PD1 and feeling good. I hope you will hear from some of them. Best wishes to continued good results for your husband.May 11, 2014 at 11:36 pm #64326 Please keep us informed about your husband’s apparently wonderfully rapid response to anti-pd1. It sounds very hopeful so far.
I am very interested for myself. I made a special effort to fly to Florida for 3 days last week just to get the first infusion of anti-pd1 a week or two before planned at home. I’m suffering small bowel blockages on a 3 times a week schedule, and they’re now putting me on a strictly IV feeding regimen, simply waiting for anti-pd1 to kick in and reduce the tumors and my abdominal distress. They don’t want to do surgery. I was progressing at last scans, so you can see my concern about a rapid response. It may save my life.
I thought 6 to 8 weeks was about when they began to look for responses to anti-pd1, but who knows?
JonathanMay 12, 2014 at 11:36 am #64327Catherine PooleKeymaster
I will check around, but I had heard 2-3 weeks for response. I know it is slower for IPI. Let me ask the experts if they know of any studies, etc.May 12, 2014 at 2:10 pm #64328 I just talked to Harriet Kluger at Yale and she said they’d seen responses beginning as early as one week, but that’s unusual – can be as slow as a couple of months – still faster than Ipi. Highly variable.
JonathanMay 12, 2014 at 2:43 pm #64329
I have been on Merck pd1 since 12/2011. I was NED at my first 12 weeks scans. A few other patients have reported an excellent response within 12 weeks. Given a “response” really cannot be proven until the results of scans are reported, there is hope for you that somewhere between 1-12 weeks, you can have a response based on other Merck patient’s experience.
Also, having been NED for over 1 yr, to everyone surprise, my brain MRI showed a brain met (4mm). Merck told me that it I radiated the brain met, I would be kicked off the trial. It was not a easy decision but I decided to roll the dice, and did not radiate the brain met. Long story short, Pd1 did effective work with my immune system to kill the brain met.
I hope that my story and experience with Merck PD1 gives hope to others, especially with brain mets. My prayers goes out to everyone. It is so sad that so many have died waiting waiting to get Merch pd1 and others like Patti, that pd1did not work.
Please feel free to email if you have any questions.
CandiMay 12, 2014 at 5:51 pm #64330
Candi, that’s an inspiring account, especially the brain mets. what a drug. BTW, Dr. Kluger, when asked, said the rate of 80% benefit to patients (and durable) reported in the Hamid article is somewhat higher than they’ve gotten at Yale, but still comparable. So I’m certainly hopeful and even optimistic.
JonathanMay 12, 2014 at 6:03 pm #64331Cbs805Participant
We go to Beverly Hills Cancer Center, Dr. O’Day. He said some patients respond very quickly. My husband, John doesn’t have any tumors that can be felt so we won’t know his response for sure until his first scan in July. So relieved to have this drug available.May 12, 2014 at 6:22 pm #64332 Jonathan,
I forgot to mention that I have corresponded with Mario & Harriet Kluger at Yale regarding that Merck pd 1 worked with my immune system to kill the brain met.
They wanted to know my case history to understand my situation in order to help other patients entering the Merck pd1 clinical trial for patients with Brain mets at Yale.
They were both very appreciative for my input. I hope others also will have similar responses with brain mets. I told them that I will keep them updated as I go forward with scans, etc.
Jonathan, MK3475 just has to work for you. Please keep us updated and give my best to Francoise. These are such difficult times for you both. Also, if you have any questions regarding side effects, etc., please do not hesitate to email me.I will keep you in my prayers.May 12, 2014 at 7:22 pm #64333
that’s a great sounding trial on anti-PD1 and brain mets, Candi. Thanks for all your info and caring. Francoise and I love the care I get here – it’s like a fancy boutique hospital, with nurses and docs who all respect each other as being a great team. I felt better as soon as they admitted me yesterday, and the nurse said something like “you’ve got the best doc in the world with Dr. Sznol”. A very compassionate man.
All the best,
P.S. I’m curious on your side-effects, if any, since i thought they were minor/insignificant. You can gett my email from catherine if they amount to anything.May 13, 2014 at 4:46 am #64334odonoghue80Participant
Hi, for those who are on Anti-PD1, or those who were on the trials with Anti-PD1, I’m curious what dosages are/were you on? 3mg/kg or 10mg/kg? I am just curious. Thanks, Shane.May 14, 2014 at 1:17 am #64335KarenJParticipant Hi!
My husband and I drove to Scottsdale from New Mexico today. He has his first appointment at the Mayo clinic tomorrow. They will determine if he is eligible for the eap. If he is, his first infusion will probably be next week. He had whole brain radiation early last year, then a vem/ipi trial. Vem for 6 weeks, then 4 infusions of ipi. The vem worked (shrunk the tumors on his adrenals and other places) but he had a mixed response on ipi. His other tumors(lungs,liver, abdomen) shrunk but the ones on his adrenals grew. And the fourth infusion made him so sick he lost 60 pounds, was very weak, had horrible diarrhea, couldn’t eat, and was hospitalized for two weeks. Then back on vem until March, when he had some numbness in his hand. He thought it might be caused by the testosterone gel(ipi blew out his pituitary so he has to replace a bunch of hormones: thyroid, cortisol, testosterone). I was afraid of a new brain met so called the doc. It was a small tumor but it was bleeding so he had brain surgery in April. He stopped vem last month and started dabrafinib and mekinist last week. He was doing well until last night. He was very ill vomiting multiple times in the middle of the night, and had fever and chills. He was so weak he could not walk to the bathroom without my help. I was so afraid he would get as bad as last summer. He did not take the mek tonight, so I am hoping he will sleep well. Though he did not eat today. I hope this illness does not make him ineligible for the eap. Many thanks to Catherine for letting me know of the early eap locations near us. I don’t think he would be good to wait ’til it gets to NM. I am interested in knowing about others’ experiences and side effects of this drug. And I will report back as his treatment progresses.May 14, 2014 at 1:31 am #64336
I sent you a private message on PD1 side effects. Your assigned email in MIF was not valid when I tried to email you.
Hope all goes well for you and your husband.
CandiMay 14, 2014 at 7:06 am #64337PieterParticipant
I have had 4 infusions (every 3 weeks 10mg) but up to now no reduction of the melanomas even a slight grow, also more tumours appearing. Since I get thee infusions it looks like the tumours are more swallowed and getting a really red colour. Also and I am not sure it is the MK3475 but since the infusion I am feeling twinges(pain) in the tumours. Hope this is a good sign the MK3475 is doing his job. Site effects are minimal, just a bit more tired, and itch on my head.
Next week I get my 5th and 3 weeks later a CT scan and a 6th infusion. If the scans shows no improvement then my oncologist wants to switch over to ipi
I am just wondering are there more people on this forum who did not see any positive effect with MK3475? (I am NRAS positive)
The good thing is that the tumour markers are around 0.8 since I started with the treatment, which gives me some hope.May 14, 2014 at 10:39 am #64338tcellParticipant
I am really far from being an expert on such things.Can you tell me if your tumor marker (I assume you are referring to S 100) is within the normal range? I do not know what units your lab is using.
However, if your tumor marker was pretty low and normal and your tumors red and swollen this just reminds me of a presentation I listened to on the ned by Dr. Wolchok from Sloan Kettering.
He says that especially for immunotherapy it can take a while until you respond and that it can even worsen until you respond. He also showed pictures of cutaneous mets that had been treated and had left reddish spots on the skin. Only under the microcope they could see that these were no active mets anymore but a mass of immune cells engulfing the rest that was left.
Also my onc told me that when they do not see any rapid improvement in the CT scan this does not necessary mean a treatment does not work as the CT does not reflect those microscopic processes but just the morphologic structures present.
What seems to count most is that the blood is ok and that you are doing ok!
I am keeping fingers crossed for you that Anti-PD1 will help you!
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