Interim Data for Merck’s MK-3475, an Investigational Anti-PD-1 Immunot
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February 10, 2016 at 1:11 am #83438middlesister1Moderator
Cindy,
Thank you for sharing your participation with the trial. I wish you the best that the side effects subside but the healing keeps working.
And, I also appreciate you sharing that you are a patient who wasn’t able to have surgery but still here to give others hope years later. My mother is also more than 2 years since diagnosis and doing well; when people join our board, a bit of hope is often what they need to see.
Take care,
CatherineFebruary 9, 2016 at 3:36 pm #83437cindy-obrienSpectatorI am currently on a clinical trial with Folfox chemotherapty and MK 3475 (immunotherapy drug) . MK 3475 is made by Merck Sharp & Dhme (subsidary of Merck & Co., inc.
I have been in treatent for 6 weeks and have infusion every two weed with a pump going home with me for more infusion for 48 hous. I am excited to be on this trial because of the positive feedback I’ve read on immunotherapy.
I am pretty sick 7 to 8 days after treatment but gradually get just about well and have another treatment. I’m always really tired, but the nausea and moth sores subside
In 2011 I was diagnosed with cc and had intensive radiation therapy (icluding brachea therapy) becuase my cancer was inoperable. IN July 2014 the CAT sscan showed two small spots obn my lungs. by December 2015 the spots had grown with many new once. I was able to have a biopsy so I could do the clinical trial. Up to that point I was just monitored and had CAT scans every three months. The cancers were small and growing slowly so no treatment for awhile.
July 10, 2014 at 1:43 am #83436msargent1SpectatorThanks for all the advice and links guys! I’ve been watching this site for a couple of weeks and it certainly help in bringing me up to speed. I’ll surely share anything I learn along the way that might help others.
I assumed the “Compassionate use of a drug” loophole would be difficult, but you never know until you ask. Anyway, from what I’ve read, I believe these drugs will get FDA approval late in the year. At that time, I was going to try working the “off label” angle … but it’s my understanding that we’d have to point to proof it works with the cholangiocarcinoma.
Melinda – I’m so happy for you and thanks for sharing!
July 10, 2014 at 1:30 am #83435mbachiniModeratorHi Michael,
So sorry to hear about your father, I am glad he has you to be such great support in his fight. From personal experience, the TIL trial can be harsh. Don’t get me wrong I would do it again in a heartbeat but going through it is rough.I know how you feel though….my dad is 79 and fighting leukemia. I want to do everything possible to help him and find treatment for him, but the truth is the treatment is harder on him at this stage of his life then the cancer….so he does what he can for as long as he can without altering too much quality of life for now.
I hope and pray that you are able to find something that will work for your father, I truly believe that immunotherapy is going to be the answer for so many…..just can’t come soon enough!!
Take care and God Bless!
MelindaJuly 9, 2014 at 6:58 pm #83434marionsModeratormsargent……I too would like to welcome you to our site. I assume that your Dad’s re-staging is to evaluate his response to his current treatment consisting of Gem/Cis.
Compassionate use of a drug is difficult but not impossible to obtain. See this link:
http://www.cancer.org/treatment/treatmentsandsideeffects/clinicaltrials/compassionate-drug-useClinical trials for immunotherapy drugs are conducted by numerous companies although; it appears that Merck is a bit ahead of the game re: accruement of clinical research studies. Pharmaceutical companies are eager to bring their drug to the market quickly and efficiently. Therefore, it is in the best interest of these companies to accrue a patient group easily accessible and voluminous enough to fulfill the requirements for clinical trials. Given the fact that data in PD-1 trials looks promising in gastro cancers as well as lung and melanoma, it makes sense that they are looking to cancers with a higher patient population than that of a rare disease. It is for that reason that few of our patients are enrolled and are able to share information with us.
I agree with you in trying to stay ahead of the game and consulting with other centers treating a high volume of CC patients.
Hugs,
MarionJuly 9, 2014 at 5:40 pm #83433gavinModeratorHi Michael,
Thanks for the youtube links. Glad to hear that you have checked out the threads already that I put in a post here and yes, it is great that Melinda is doing so well! Also great to hear that you are doing your research and getting up to speed with everything, that is excellent. The better informed you are the better equipped you will be in helping your dad when it comes to making treatment decisions etc. So keep on learning, reading and asking the questions!
That would be real good if you could get your dad into MD Anderson as I know that he will be in very good hands there. Please let us know how that goes and if you have any success with getting him into a trial and stuff. I’m not sure about the appeals process you talk of but hopefully others will be along soon that can help you with that. You are right in that not so much attention and research has been done with regards to CC but hopefully things are changing for the better with that! Just hope that these changes happen quickly, very quickly in fact!! A lot of excitement surrounds immunotherapy right now and hopefully so much of the good trial results, developments etc will be able to be replicated with regards to CC, fingers are crossed.
Thanks Michael.
My best wishes to you and your dad,
Gavin
July 9, 2014 at 3:23 pm #83432msargent1SpectatorGavin – Thanks for the welcome and quick response! My dad was diagnosed with cholangiocarconoma about a month ago, and has started on the standard protocol of gemcitabine plus cisplatin. His re-staging date is mid-august. Anyway, I’ve been trying to come up to speed as fast as possible, and it appears there isn’t as much attention paid to this disease as some of the other cancers, so I’m now generally focused on immunotherapy. I have seen the links above, and I’m extremely happy for Melinda! Since my dad is 78, he falls outside the range for the TIL therapy, but a cancer researcher said you can sometimes appeal this on compassionate care grounds. I haven’t tried that yet, but have really focused on the checkpoint inhibitor drugs. They gotten good result on Melanoma, and I know they are starting to try these drugs on other cancers, but other than the lady at UCSF, who is on an experimental anti PDL-1 drug, I haven’t really seen anyone on this site involved in PD-1 or CTLA-1 trials.
My dad is currently going to a hospital in Atlanta, and his current doctor doesn’t appear very interested in trials, so I’m trying to get him into MD Anderson. I actually live in Dallas, so MD Anderson is within 4 hrs of my house, and I can move my dad out here and get his treatment there. My backup plan is to get him into Emory in Atlanta.
By the way, if anyone is interested, I found a couple of links discussing checkpoint drugs … the focus is on Melanoma, but it is being pushed out to other types of cancer:
http://www.youtube.com/watch?v=XGeqAEr1RnE
http://www.youtube.com/watch?v=5rzWQ0tE7lQ
http://www.youtube.com/watch?v=b7TH3W_PW1s
July 9, 2014 at 5:49 am #83431gavinModeratorHi Michael,
Welcome to the site. Sorry that you had to find us all here but glad that you’ve joined none the less. We’ll help as best we can so ask away and we’ll do what we can to help.
Have you had a look at this trial?
http://clinicaltrials.gov/ct2/show/study/NCT02054806?show_locs=Y#locn
Have you had a look at this one as well?
http://www.clinicaltrials.gov/ct2/show/NCT01174121
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=11199
Our Melinda is on this one and is doing very very well indeed. I am sure that she and others will be along soon to offer their thoughts as well on this.
Keep coming back here Michael, we are here for you and please let us know how things go for you.
My best wishes to you,
Gavin
July 9, 2014 at 2:48 am #83430msargent1SpectatorGavin – do you know if they’re doing any trials with the checkpoint drugs (PD-1, CTLA-1) for people with cholangiocarcinoma?
June 30, 2014 at 5:49 pm #10252gavinModeratorInterim Data for Merck’s MK-3475, an Investigational Anti-PD-1 Immunotherapy, in Previously Treated Patients with Non-Small Cell Lung Cancer to be Presented at 15th World Conference on Lung Cancer.
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