Urachal Cancer Survivor

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RE: Urachal Cancer Survivor

by superbowl52_ on Thu Mar 21, 2019 02:57 PM

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Thanks for your reply. Sounds like you are in a similar trial. The one being offered to my dad is an immunotherapy (one of the Yervoy/Opdivo) plus cabozantinib (a targeted therapy).

How long have you been stable on the immunotherapy? When you say you're a candidate for what's next - what type of treatment are you referring to? What have the doctors advised as the next treatment option if the current immunotherapy drugs are no longer working as well? 

Best regards!

RE: Urachal cancer is eligible for phase one clinical trials

by dstef69 on Sat Mar 23, 2019 02:07 PM

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Hi Michael I hope you’re doing well,sorry for the delay I was busy with my work and I didn’t check the blog in a while. I started the chemo regimen G-flip four weeks ago and I’m getting ready to start the second treatment. I’m flying in Monday morning and hopefully I can start sometime Monday night or Tuesday morning depending on the hospital bed’s availability. The first treatment went well I did feel a little dizzy flying back and couple days but after that but after that I got back to normal 100%.Basically I am in the same situation like you I have couple lymph nodes one it’s a little bit big .4 by .7 mm .We don’t know if they were there before the disease started so I will do a second CT scan after this coming treatment and we’ll see if they shrink or if they will stay the same(I’m praying they will be the same).I didn’t lose my hair yet but I lost a little bit of weight mainly because I don’t eat anything with sugar.Also the ringing in the ears got a little bit worse(My oncologist here in Cumming said that it’s because of the cisplatin) So I’m gonna talk to dr Shifker about that. Like you said the hospital is treating me well the food it’s good and I enjoy walking every day in the park and on the sky bridge. Thank you again for all your advice,I’ll keep you posted! Daniel

RE: Urachal Cancer Survivor

by christobell1 on Fri Apr 05, 2019 05:47 PM

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Hi

My husband's cancer has spread to his lungs and although it has been stable for a year or so, he is feeling unwell for the first time in a long time and is having some cognetive issues. We are in the UK, and as it is not a huge country, cases of Urachal cancer are even rarer.

Is your trial in the US? Do you know if they would accept international trialers?

If there is anyone else in the UK facing this please contact me - it would be great to connect.

Many thanks

Christina

RE: Urachal Cancer Survivor

by dstef69 on Fri Apr 05, 2019 06:24 PM

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Hi Christina,yes, I’m in US, I live in Georgia but I’m doing the chemo treatments in Houston at MD Anderson, I finished two treatments and I’m getting ready to go back there on April 14 for the third treatment.My doctor is Arlene Radtke Siefker, she is one of the best in this rare cancer so don’t hesitate to call her and ask her anything you wanna know. Her phone number is 713-745-7575. Let me know if you have any other questions. Daniel

RE: Urachal Cancer Survivor

by PhilA on Fri Apr 05, 2019 08:03 PM

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Hi Christina, I’m sorry to hear of your news. While I haven’t liaised with patients and doctors in the UK, I recently communicated with a French couple who sought treatment in France. Let me know if you’d like me to connect you. Phil

RE: Urachal Cancer Survivor

by SMMile on Sat Apr 06, 2019 07:07 PM

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I stared Yervoy/Opdivo in Nov 2018, currently doing Opdivo alone. I am anxious for some shrinkage of the tumor. I get another CT scan in a few weeks. I believe I will stay on the Opdivo as long as I remain progression free. As far as what's next, I don't know. But these drugs only work for 10-20 per cent, my "stable" condition is a positive result. I have the best doctor, team and hospital in the world...Seifker/Lydia/MD Anderson. But mother nature is bigger than all of us...

RE: Urachal Cancer Survivor

by vtoole on Sat Apr 06, 2019 07:39 PM

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On Apr 06, 2019 7:07 PM SMMile wrote:

I stared Yervoy/Opdivo in Nov 2018, currently doing Opdivo alone. I am anxious for some shrinkage of the tumor. I get another CT scan in a few weeks. I believe I will stay on the Opdivo as long as I remain progression free. As far as what's next, I don't know. But these drugs only work for 10-20 per cent, my "stable" condition is a positive result. I have the best doctor, team and hospital in the world...Seifker/Lydia/MD Anderson. But mother nature is bigger than all of us...

That is so very exciting to hear...I am convinced MDA and Dr. Arlene Seifert Radtke are the very best with this rare form of cancer...she has done extensive research and works with many patients....continued luck and success...

RE: Urachal Cancer Survivor

by christobell1 on Sat Apr 06, 2019 07:39 PM

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Hi Phil Thanks for responding. Yes please, it would be greatly appreciated. Kindest regards Christina

RE: Urachal Cancer Survivor

by vtoole on Sat Apr 06, 2019 07:44 PM

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On Apr 05, 2019 5:47 PM christobell1 wrote:

Hi

My husband's cancer has spread to his lungs and although it has been stable for a year or so, he is feeling unwell for the first time in a long time and is having some cognetive issues. We are in the UK, and as it is not a huge country, cases of Urachal cancer are even rarer.

Is your trial in the US? Do you know if they would accept international trialers?

If there is anyone else in the UK facing this please contact me - it would be great to connect.

Many thanks

Christina

Christobel...I remember you on this blog site...I am sorry to hear of your husband’s current challenges... I know MDAnderson in Houston sees patients from all over the globe. Perhaps, you might contact Dr. Arlene Seifert Radtke, whom I have recommended numerous times...I wish much luck on this continued journey...

RE: Urachal Cancer Survivor

by pwinter on Wed Apr 10, 2019 03:57 PM

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On Mar 19, 2019 10:55 AM superbowl52 wrote:

Hello,

Has anyone here been on the NIH study (or other similar study) for combination immunotherapy and targeted therapy (nivolumab and cantozantinib?) 

Also, has anyone tried Car-T cell therapy? tIt is very experimental - they are trying it on a lot of different cancers although with varying success.

My dad has had a partial cysectomy, HIPEC, and two chemo regimes and we are now trying this. 

Thanks for any feedback.

Best to all

Par

Hello Par,

As your dad prepares for the possibility of immunotherapy, I wanted to mention a few talks I’ve heard lately by Dr. William Li. The first talk is called The Science of How the Body Heals Itself with William Li, M.D.

 https://www.youtube.com/watch?v=wlJEGJvI1UA&feature=yout

 

At 56:06 minutes into the lecture, Li relates that his elderly mother was treated with immunotherapy for her metastatic endometrial cancer. She had 3 immunotherapy treatments after which there was no evidence of disease. Li goes on to say that immunotherapy treatments can be impacted by food and its affect on our gut microbiome. He specifically states that they have determined that the reason some patients respond to immunotherapy while other patients do not is due to the presence of one particular gut bacteria,Akkermansia muciniphila. Importantly, he says that this is “not known by oncologists or the cancer patient committee”.

 

Li continues, stating that the only source of Akkermansia is cranberries and pomegranates and an 8 oz cup of pure pomegranate or pure cranberry juice over the course of two weeks will populate the gut with Akkermansia. (In an interview I heard Li give on Doctor’s Farmacy,https://www.youtube.com/watch?v=UUSWWI2qVt4

he mentioned this same point. In that interview, he mentioned that only 20% of patients undergoing immunotherapy respond and that the only difference that researchers have detected is that those 20% of responders have the gut bacteria Akkermansia, as did his mother.) Li goes on to say that you can’t take Akkermansia as a probiotic and that the antibiotic Clarithromycin will wipe it out completely.

 

I found all this shocking – that he would be making such bold statements – though he is a well respected scientist. His bio in Bloomberg states, in part, “Dr. William W. Li, Ph.D, M.D., is a Co-Founder of The Angiogenesis Foundation in Cambridge, Massachusetts and serves as its Chief Executive Officer and has been its President since April 1990 and Medical Director since December 1994…Dr. Li has extensive expertise in tumor angiogenesis, in vivo angiogenesis models, angiogenesis therapeutic development and clinical trial analysis.”

 

Dr. Li also gave a widely received TED Talk in 2014 entitled “Can we eat to starve cancer?”

https://www.youtube.com/watch?v=OjkzfeJz66o

 

So I searched around a bit and found this information that could possibly have practical implications for any of us undergoing immunotherapy. The science is a little over my head but these are some of the highlights. All the text below each link is from the articles.

 

Gut Bacteria Predict Responses, Survival Time to PD-1 Cancer Immunotherapy

https://www.cancernetwork.com/melanoma/gut-bacteria-predict-

The gut microbiome affects the efficacy of PD-1 immune checkpoint blockade immunotherapy against melanoma and other cancers, according to two studies published in Science.

“Our results indicate that the gut microbiome may modulate responses to anti–PD-1 immunotherapy in melanoma patients,” reported lead study author Jennifer Wargo, MD, of the MD Anderson Cancer Center in Houston, Texas, and coauthors.

 

Patients with more Ruminococcaceae-order and fewer Bacteroidales-order species experienced significantly better responses and had higher concentrations of circulating and tumor microenvironment immune T cells, Dr. Wargo’s team found. These patients also experienced longer progression-free survival times than did other patients.

 

The second study, led by Laurence Zitvogel, MD, of the Gustave Roussy Cancer Campus in Villejuif, France, showed that among patients with lung, kidney, and bladder cancer, those who had taken antibiotics within 2 months before starting PD-1/PD-L1 blockade immunotherapy, or within a month of starting therapy, relapsed more quickly and had poorer survival than patients who did not receive antibiotics around the time of their cancer immunotherapy. Responding patients had more Akkermansia muciniphila, which inhabits the gut’s mucus lining, and Ruminococcus bacteria in their guts than did nonresponders, the authors reported.

 

Gut microbes can shape responses to cancer immunotherapy

https://www.nature.com/news/gut-microbes-can-shape-responses

 

Cancer immunotherapies unleash the body’s immune system to fight cancer, but microbes living in a patient’s gut can affect the outcome of those treatments, two research teams have found.

 

Their studies, published on 2 November in Science1, 2, are the latest in a wave of results linking two of the hottest fields in biomedical research: cancer immunotherapy and the role of the body's resident microbes, referred to collectively as the microbiome, in disease.

 

They also highlight the impact of antibiotics on cancer immunotherapies, particularly drugs that block either of two related proteins called PD-1 and PD-L1. One of the studies found that people treated with antibiotics for unrelated infections had a reduced response to these immunotherapies.

 

“It raises important questions,” says cancer researcher Jennifer Wargo of the University of Texas MD Anderson Cancer Center in Houston, and an author of one of the studies. “Should we be limiting or tightly monitoring antibiotic use in these patients? And can we actually change the microbiome to enhance responses to therapy?”

 

Wargo saw a presentation about the work at a cancer meeting several years ago. “I was floored,” she says. Wargo saw an opportunity to expand the work to humans through her access to clinical samples at MD Anderson.

 

Wargo teamed up with epidemiologist Vancheswaran Gopalakrishnan and other researchers to collect faecal samples from more than 100 people with advanced melanoma before they began treatment with anti-PD-1 immunotherapy drugs. The scientists found that those who had the most diverse gut microbes were most likely to respond to the immunotherapy1.

 

Gut microbes modulate host response to immune checkpoint inhibitor cancer immunotherapy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6233902/

 

Using quantitative metagenomics by shotgun sequencing of DNA samples from stools of 100 NSCLC and RCC patients, the researchers identified Akkermansia muciniphila (A. muciniphila), a commensal species associated with the gut mucus lining, as the microbe that is most significantly associated with favorable clinical outcome in both NSCLC and RCC patients. This finding is consistent in principle with another recent report that specific commensal microbes modulate cancer patient response to ICI immunotherapy (9). However, gut microbe modulation of patient response to ICI immunotherapy might be cancer type-dependent. In melanoma patients, responders had a more diverse microbiome and more specific microbes associated with the favorable response to ICI immunotherapy than NSCLC and RCC patients (9).

 

Environmental and Gut Bacteroidetes: The Food Connection

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3129010/

 

Several studies have shown that the diet strongly influences the intestinal microbiota. Early research focused on the comparison of fecal microbes retrieved from individuals with different nutritional habits. Benno et al. (1986) showed significant variations in the cultivable microbiota of rural Japanese and urban Canadians. They proposed that this discrepancy relates to the contrasted diet of the two populations…In a mouse model reproducing the human intestinal microbiome, the bacterial community composition and the representation of metabolic pathways was strongly dependant on the nature of the diet (Turnbaugh et al., 2009). The proportion of Bacteroidetes representatives decreased drastically when animals were switched from a chow containing low levels of fat and high level of plant polysaccharides to a Western diet (high fat, high sugar)…An independent study on a murine model showed that a high-fat diet was associated with a decrease in more than 30 lineages within the Bacteroidetes phylum, including in the BacteroidaceaePrevotellaceae, and Rikenellaceae families (Hildebrandt et al., 2009). Recent studies have investigated the diet impact on the human gut microbiota. The consumption of chemically modified resistant starch (RS4) instead of normal, digestible starch led to a shift in the bacterial community (Martinez et al., 2010). Even if results varied substantially between the 10 considered subjects, RS4 consumption was notably followed by enrichment in Bacteroidetes, among which Parabacteroides distasonis increased sevenfold. The observed changes were completely reversible within 1 week, demonstrating the high population dynamics (Martinez et al., 2010).

 

The Health Advantage of a Vegan Diet: Exploring the Gut Microbiota Connection

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4245565/

 

And here are three links to the Nutrition Facts website that indicate that we can relatively quickly and successfully alter our gut bacteria.

 

https://nutritionfacts.org/video/how-to-develop-a-healthy-gu

https://nutritionfacts.org/video/microbiome-we-are-what-they

https://nutritionfacts.org/video/how-to-change-your-enteroty

 

I hope some of this might be useful.

Paul

 

 

 

 

 

 

 

 

 

 

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