Search Results for 'Tremelimumab'

Hi there,

Hopefully someone will have experiences etc to share with you about this trial, although I have none. This is the trial here is it not?

https://clinicaltrials.gov/ct2/show/NCT02821754

Thought I would put a link to it on the boards as it may help people recognise it.

I did a search of the boards for the drugs used in the trial as thought that may be of help to you and came up with these links –

Tremelimumab –

https://cholangiocarcinoma.org/db/search/Tremelimumab/

Durvalumab –

https://cholangiocarcinoma.org/db/search/Durvalumab/

Hope some of that is of use and I keep my fingers crossed for your husband for the best possible outcome to the trial.

My best to you both,

Gavin

dear Priscilla, I’m so sorry for what your father is going through, and you and your sister with him. My dad also has metastases (peritoneal carcinomatosis and perihepatic nodes, and a tumor around the portal vein/bile ducts, which required him to get a plastic stent.)

He does not have any genomic markers for immunotherapy either, but we are on an immunotherapy plus ablation trial at the NIH. It uses anti PD-L1 (durvalumab) and anti CTLA4 (tremelimumab) with one ablation procedure to one tumor (we did it to a perihepatic lesion, in the beginning of August, after 2 months/infusions of the immunotherapy.) The first scan at the end of Aug was stable. I hope that’s a good sign. Our next scan is next week – scared but hoping for good.

The idea behind using ablation with immunotherapy is that the ablation (radiofrequency ablation in our case) releases neoantigens, and the primed immune system would hopefully then recognize the cancer and create an abscopal effect (go after metastases all over.)

Apparently combination immunotherapy (like nivolumab and ipilimumab, or our combo) showed some efficacy for lung or liver cancer patients who did not express PD-1/PD-L1… as far as I know, they don’t have the data yet for biliary cancer.

Sending my hopes and wishes with love, Lili

Dear Elena, I’m so sorry for what your brother is going through, and you with him. He is so young – it’s so heartbreaking and shocking that this happens to our young and healthy loved ones.

If there’s anything I’ve learned from our experience than can help, please don’t hesitate to ask… Billy might have a more similar experience with his wife since my dad has been stage IVB (due to mets) since diagnosis. It’s so good you are a PA and can be the knowledgeable one in the family. I was just a grad student in my 20s when my dad was diagnosed March 2017 but I have been studying ever since to learn as much as I can and be his advocate.

The most important thing I would say is to ask your doctors to please send a sample of your tumor tissue for genomic testing ASAP (like at Foundation One, or MSKCC where they’re doing this testing for free for cholangio patients). If he has targetable mutations or immunotherapy indicators  – ask to test for PD-1/PD-L1 (a separate test), MSI, TMB, DNA MMR – then maybe he will respond to targeted treatment or an immunotherapy trial. I would also ask MSK about newer radiation options, like ablative image guided IMRT, or proton beam radiation.

In terms of integrative complementary approaches – we went to MSK too, and their integrative center’s Dr. Deng gives the most basic of complementary suggestions (probiotics with bifido, coriolus, vitamin D…) I don’t think you can rely on the large institutions for the most comprehensive integrative options, but it’s hard to know what else might be helpful. I think exercise was our magic weapon, since my dad was an athlete upon diagnosis and continued to exercise as much as he could throughout chemo. My dad was on Gem/Cis for 11 months (longer than average) with stability/slight shrinkage (he also used CBD oil orally, THC (vaporizing the pure plant – some people also take THC oil orally), probiotics, the recommended supplements like vitamin D and coriolus, acupuncture (definitely helped him feel better and with neuropathy from cisplatin), ginger for nausea, healthy plant-based diet (tried for lots of organic vegetables, chickpeas, eggs, some fish/chicken when he wanted more protein…), talk therapy and journaling, and any de-stressing we could think of like comedy…) before a scan showed progression and he had to switch to Folfiri.

They added curcumin to his supplements while he was on Folfiri for about 3 months but Folfiri didn’t work and then he needed a biliary stent. At the end of June 2018, he began a clinical trial at the NIH in Bethesda, Maryland – using immunotherapy (2 checkpoint inhibitors: durvalumab and tremelimumab) and ablation, in the hopes that the ablation will release neoantigens that can be recognized by the primed immune system. The first scan in Aug was stable and we are hoping for even better in the October scan.

I also read the book Radical Remission and try to apply the 9 factors to my dad in some way. Sending my hopes and wishes and love,
Lili

Dear Laura, I’m so sorry for what you’re going through. You are so young!! I am at a loss for words…

If there’s anything I’ve learned from our experience than can help, please don’t hesitate to ask…

The most important thing I would say is to ask your doctors to please send a sample of your tumor tissue for genomic testing ASAP (like at Foundation One, or MSKCC where they’re doing this testing for free for cholangio patients). If you have targetable mutations or immunotherapy indicators (ask to test for PD-1/PD-L1, MSI, TMB, DNA MMR…) – then maybe you will respond to targeted treatment or an immunotherapy trial.

Can you ask if the goal of your chemo is eventual surgery? Are there any liver-directed therapies (Y-90, TACE, ablation?) you could do?

My dad was on Gem/Cis for 11 months with stability/slight shrinkage (he also used cbd oil, THC (vaporizing the pure plant), probiotics, recommended supplements like vitamin D and coriolus, acupuncture, ginger for nausea, healthy plant-based diet, exercise, talk therapy and journaling, and any de-stressing we could think of like comedy…) before a scan showed progression and he had to switch to Folfiri.

He was on Folfiri for about 3 months but it didn’t work and then he needed a biliary stent. At the end of June 2018, he began a clinical trial at the NIH in Bethesda, Maryland – using immunotherapy (2 checkpoint inhibitors: durvalumab and tremelimumab) and ablation, in the hopes that the ablation will release neoantigens that can be recognized by the primed immune system. The first scan in Aug was stable and we are hoping for even better in the October scan.

Where are you being seen? Can you get 2nd opinions from the cholangio experts recommended by this foundation?

I also read the book Radical Remission and try to apply the 9 factors to my dad in some way. Sending you all my wishes for healing, and lots of love
Lili

Hi Betti, I’m so sorry about what your dad is going through, and you with him. I am also on this board for my dad, who was diagnosed in March 2017, also stage 4 from the start.

I appreciate the Greek way of not devastating the patient – the first oncologist my dad saw in the US was so negative and bleak… I would not listen to their time periods, because they truly don’t know how anyone will respond and the median time of a year means that people also outlive that amount. My dad is here 18 months post diagnosis, still fighting. If you saw him on the street, you would not guess what he is going through.

I hear you completely on how hard it is to see him unrecognizably frail. I’m guessing this is his reaction to the chemo. Is there any chance they can lower the doses? They did this for my dad when he was on Gem/Cis, and he stayed on it for 11 months with stability/slight shrinkage before a scan showed progression and he had to switch to Folfiri.

He was on Folfiri for about 3 months but it didn’t work and then he needed a biliary stent. At the end of June 2018, he began a clinical trial at the NIH in Bethesda, Maryland – using immunotherapy (2 checkpoint inhibitors: durvalumab and tremelimumab) and ablation, in the hopes that the ablation will release neoantigens that can be recognized by the primed immune system. The first scan in Aug was stable and we are hoping for even better in the October scan.

The most important thing I would say is to ask them to please send him tumor tissue for genomic testing ASAP (like at Foundation One). If he has targetable mutations or immunotherapy indicators (ask to test for PD-1/PD-L1, MSI, TMB, DNA MMR…) – then maybe he will respond to targeted treatment or an immunotherapy trial.

Unless he is having a major shrinkage response to the chemo, I would question whether it is the right choice for him since when surgery is not the goal, then the goal of chemo here is supposed to be extending his quality of life time – “more good days”, an oncologist told me. But if the side effects of the chemo are taking all the quality of life, then I would reassess the balance… perhaps look into metronomic/low-dose chemo?

Can he also get a CT and not just an MRI? (They always do CT at the major institutions here in the US.) Did they say there is a chance for surgery after chemo? I think you need clear answers on this to better assess the goals of the chemo.

There is absolutely hope – I also read the book Radical Remission and try to apply the 9 factors to my dad in some way. Sending you my hopes and all my compassion and love

Hi Tilly, I’m so sorry your husband is going through this, and you with him.

I am wondering if you can get them to do a needle biopsy to send for genomic testing at Foundation One or one of the other labs, to find out if he has any targetable mutations or immunotherapy indicators? (Ask for PD-1/PD-L1 testing as well as the ones they should already include – MSI, TMB, DNA MMR…)

He may have a better treatment option that chemo in that case… also regarding ablation – the trial we are on for my dad at the NIH right now uses immunotherapy (2 checkpoint inhibitors: durvalumab and tremelimumab) plus ablation (he got a perihepatic lesion radiofrequency ablated), in the hopes that the ablation will release neoantigens that the primed immune system can recognize.

Sending you my warmest wishes and hopes