December 8, 2017 at 8:49 am #96225positivityParticipant
I know this is an extreme late response and don’t know the status of this patient, but needed to express my dissatisfaction with this oncologist at USC. I can add more detail if anyone is interested.October 17, 2014 at 2:30 am #84209
The study is conducted in these centers, Contact information is listed on the clinicaltrials.gov website: http://clinicaltrials.gov/ct2/show/stud … ocs=Y#locn
United States, Arizona
Call for Information (Investigational Site 0002) Recruiting
Scottsdale, Arizona, United States, 85258
United States, California
Call for Information (Investigational Site 0007) Recruiting
San Francisco, California, United States, 94143
United States, District of Columbia
Call for Information (Investigational Site 0005) Recruiting
Washington, District of Columbia, United States, 20007
United States, Indiana
Call for Information (Investigational Site 0008) Recruiting
Indianapolis, Indiana, United States, 46202
United States, Maryland
Call for Information (Investigational Site 0006) Recruiting
Rockville, Maryland, United States, 20850
United States, Massachusetts
Call for Information (Investigational Site 0004) Recruiting
Boston, Massachusetts, United States, 02215
United States, New Jersey
Call for Information (Investigational Site 0009) Recruiting
New Brunswick, New Jersey, United States, 08903
United States, Pennsylvania
Call for Information (Investigational Site 0001) Recruiting
Philadelphia, Pennsylvania, United States, 19104
Call for Information (Investigational Site 0070) Recruiting
Philadelphia, Pennsylvania, United States, 19104
United States, Tennessee
Call for Information (Investigational Site 0010) Recruiting
Nashville, Tennessee, United States, 37232
United States, Texas
Call for Information (Investigational Site 0003) Recruiting
Houston, Texas, United States, 77030October 16, 2014 at 7:46 pm #84208msargent1Participant
A month or so ago, I asked a foundation in California about the UCSF MK-3475 trial, and they contacted the doctor out there, and her response was it was closed. I continue to look for other immunotherapy trials, including ones that might combination therapies, but haven’t found anything new yet … good luck!
MikeOctober 16, 2014 at 8:13 am #84207jtaylor1112Member
I am at the Hail Mary stage for my husband but have been told the MK-3475 study is now closed to cholangio. Anyone else hearing that?September 26, 2014 at 5:44 pm #84206
cholangiotango……Someone once said: this cancer is not for the weak; there is much truth to that. It is tough having to make decisions based on limited options especially those presenting with a high risk. The good news is that your family is closely working together and as Julie has mentioned your Dad’s wishes are honored. Please let us know the day set for the procedure so that a tidal wave of good wishes can surround your family.
Also, UCSF, San Francisco, is the closest institution to you conducting MK-3475 clinical research study for participants With Advanced Solid Tumors.
MarionSeptember 26, 2014 at 4:12 pm #84205iowagirlMember
Hi….I don’t have any info to add to this discussion, but have been following your posts. I think the most important thing here…is that your dad “wants” to fight yet. I get that….there’s always that small chance that this procedure might work…and your dad wants to grab onto that and give it all he’s got. It’s a “Hail Mary,” and sometimes those Hail Mary plays work. I know there are some on the boards whose loved ones have said, “Enough,” and chose to live the time left as good as they could, but others have chosen to fight on……and some of the latter have defied the odds. As long as there is life, there is hope. But, the choice is very individual. Bless you for supporting your dad in his decision. We’ll all be here cheering him and your family on…and praying for the best possible results.
Julie t.September 26, 2014 at 5:32 am #84204
We met with my dad’s Onc today. He was very direct which I appreciated. Said dad’s liver function is not good – bili is at 3.5. Because an external drain isn’t an option, and stenting has now failed, which essentially takes clinical trials off the table he said the options were to:
A. Undergo experimental liver drainage work with the GI (laser / cholangioscopes) to open the blocked duct and improve bili drain,
B. Consider a trial that supports high bili which he estimated might have a 5% chance of working,
C. do nothing, in which case dad has 3-6 months.
He said if it were his dad, he would suggest doing nothing and enjoying the last few months of life, because the other options weren’t likely to help. I said why not consider an off label application of Keytruda (aka MK-3475), to which he thought might be a good idea but he didn’t think we can get it approved by insurance, or by Merck since it was JUST approved (if anyone knows how to get access to this please let me know).
Dad, mom and myself discussed it and he still wants to fight. We all agreed to go with the option to clear the duct path through the experimental drainage procedure. The thinking is that if it accelerates his death then so be it, but it’s worth the potential upshot it may bring.
I’m devastated . Not the emotional type but have to admit this has hit me hard.
If anyone has any ideas for any of these strategies, or even a story to share about someone that was in this very same position and had a good outcome, it would be welcome.September 24, 2014 at 12:24 am #84203
Judy…physicians most likely will respond to another physician.
MarionSeptember 24, 2014 at 12:05 am #84202judymMember
cholangiotango and marion. Thanks so much for your input. It’s really helpful.September 23, 2014 at 9:47 pm #84201
cholangiotango….you might want to take a look at our Medical Advisory Board members:
Perhaps your Dad or his physician can reach out to one of the members for further details on the discussed procedure.
In my opinion, you and your Dad have done an excellent job in choosing your healthcare team. Kudos to you.
MarionSeptember 23, 2014 at 4:53 pm #84200
Thanks Judym and Marions…. first to Judym….
I would love to learn that there is a better specialist / institution in the area that I’ve somehow missed. I’m at the point that I’m loosing hope, which is very stressful but inevitable in many cases I suppose.
The reason I chose USC and Dr. E. is because of the shear number of clinical trials USC is the primary investigator for in terms of liver cancer. Another Dr. on that staff “Dr Lenz” is world renowned. UCLA where my dad worked for 30 years had nothing to offer except chemo, which we know is a dead end. Also in my carefully calculated opinion (see earlier post) Dr. Hecht who is according to them the best they have, was inept.
If you know if another doctor in the area we should contact, please let me know. Thanks.
To Marions… I would ask if you know the cholangioscopes approach to yield good results. It’s a tough decision because it Dr Buxbaum the GI that would do the procedure said there can be trauma but I think if it brings the bili down dad would consider it. Do you know many folks that have had that procedure and have they found it to work ?September 23, 2014 at 3:03 am #84199
cholangio….USC has a robust hepatobiliary department – you are in good hands.
You might want to ask either doctor if the patient was their Dad, would they consider the cholangioscopes approach?
Hugs and tons of good wishes,
MarionSeptember 23, 2014 at 12:55 am #84198judymMember
I have been following your story and hope that the new trial/therapy works for your dad. Also, I am wondering if you could share your reasons why USC is considered the best place to go in the southern CA or LA area– and why or how you came to choose Dr. El-Khourey.September 22, 2014 at 4:25 am #84197
Thanks Lainy and Gavin for your encouragement. I definitely plan to get more done. Another opinion in Los Angeles is possible, but I don’t think my dad would go for it. Also, we’re at USC now, which is widely known for being THE place to go for CC in the Los Angeles area (we were at UCLA). What I CAN do is research trials that others say are working for them in Los Angeles, such as NCT02178722
They tried to re-stent dad but said there was too much tumor . Also Dr. El-Khoueiry informed me that upon further review of the CT/PET scans, both himself and the IR concluded a Percutaneous Biliary Drainage is not an option.
The GI that tried re-stenting emailed me stating “The readily accessible ducts have been stented and appear to be draining well. The system we cannot reach could potentially be accessed using cholangioscopes (small scopes which pass through our larger scopes) and potentially lasers or rigid dilators. There is no reason that this would impact tumor spread or growth but could cause local trauma such as bleeding. There are no high quality studies-only case reports/series-given the rarity of use.”
The GI called me back after conferring with Dr. El-Khoueiry and suggested we might not want to take the risk, but without it dad’s billiruben will not go below 3-4 or so. It’s a tough decision to make. Dr E suggested another trial / therapy that uses low dose (I think this is referred to as metronomic treatment) chemo, sounded like pico something.September 21, 2014 at 5:41 pm #84196gavinModerator
I’m sorry to hear this latest news about your dad. I’m with Lainy here about seeking further opinions if you can for your dad. How does he feel about that? Hoping that you get some good news from the trial that you are looking into for your dad and please let us know how you get on with that.
The fatigue and tiredness that your dad is experiencing right now is very common with this cancer and my dad went through that as well fro quite some time. Please know that we are here for you throughout, you are not alone in this.
My best wishes to you and your dad,
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