Urachal Cancer Survivor

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RE: Urachal cancer is eligible for phase one clinical trials

by Schuls on Fri May 03, 2019 09:42 PM

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On Apr 08, 2018 1:12 PM pwinter wrote:

On Mar 28, 2018 6:12 PM Merel wrote:

Hi all, Some of you might know me from a few years ago, my names Merel, I’m from Holland, I got diagnosed with urachal cancer back in 2015 when I was 24. I was treated with radiotherapy and surgery. They removed the dome of my bladder along with part of my intestines and lots of lymph nodes. This was successful at the time and I’ve been clean until august 2017. In my routine ct scan they found new growths on my peritoneum (stomach lining) as well as on my bladder and a few other spots. I was put forward as a candidate for HIPEC surgery last October, unfortunately this was only an open close procedure as the cancer was too far spread all over the stomach and organs. As a last resort they started me on chemo and I’ve just finished 8 rounds. I had oxilaplatin, 5-FU and ironetecan. First 4 rounds the main growths had reduced slightly and tumour markets started to come down so we continued but on a lower dose of oxilaplatin(50%) as it was too harsh on my body and white blood cell count/immune system. I also had around 3 weeks between rounds. After the last 4 rounds they believe the disease is now stable (no new growths nor decreasing growths) I’ve now been recommended to have a 6/8week break on chemo and then redo a scan to reassess but probably looking at more chemo. I’m now relying on my diet which I’ve drastically changed already during these 8 weeks and I’m still learning as I go along. We are trying the following to increase my immune system and hold the tumour at bay: Supplements: AHCC, turmeric, wheatgrass, goldenseal, turkey tale mushroom tablets, cannabisoil, astragalus,vitamin D3 and cats claw. Aside from that lots of juicing with lots of veg, green tea, and plenty of water. Trying to avoid sugars and gluten as much as I can as well, and so far tumour markers have dropped a lot more since the diet changed and chemo decreased( so we’re hoping it’s helping) Any input with regards to diet would be highly appreciated! Going forward obviously options are limited and we are searching for alternatives or any advice. We’re really interested in immunotherapy if anyone has any information or experiences we can discuss with my oncologist. Also we are looking in to a second opinion, possibly at Sloan Kettering or md. Anderson as it seems to come up here a lot. Would anyone have any contact details? Thank you so much for taking the time to read this and any input would be much appreciated. For anyone else fighting out there, big hugs and lots of positivity and never lose hope! We all keep learning and growing along the way. All the best, Merel

Hi Merel,

I’m sorry it has taken me so long to respond but I can briefly share some of what I have learned about diet and doctors. I was diagnosed with urachal cancer in 2014 and following surgery at UNC Chapel Hill, traveled to MD Anderson to consult with Dr. Siefker-Radtke. No chemo was recommended. I returned home and began reading and researching and transforming my life. One of the most important changes I made was with my diet, and everything I have read indicates that this is critical to healing and protecting our bodies, so I am glad that you have made headway on this front and that you are already seeing positive results. At this point I have a lot of faith in a Mediterranean (though mostly vegan) diet, which is what I follow. But I have also learned about the ketogenic diet from some researchers and clinicians and while that diet is in some ways in direct opposition to the Med/vegan diet, there is a lot of validity to this approach, as well.

 

One of the most fundamental aspects of the regimen I follow is to completely avoid foods high in sugar, as sugar is the primary fuel of cancer cells. For me, this means almost never eating any processed food, very limited fruit and grain intake, and also strict limits on vegetables that are high in sugar. I began my quest for nutritional knowledge by following the guidelines in the book, The pH Miracle, by Robert and Shelley Young. (This book had been recommended to me by a stage4 cancer survivor as the key to his recovery.) While I no longer put as much credence in the acid/alkaline theories behind these recommendations, I have found that the Young’s nutritional advice has almost always been validated by evidence-based research in anti-cancer nutrition. This may be because the foods that they advise against – those that are acidifying in the body – also tend to be those higher in sugar and protein. If you watch Dr. William Li’s’s TedTalk here:

 

Can we eat to starve cancer?

https://www.ted.com/talks/william_li/up-next "" target="_blank" rel="nofollow">https://www.ted.com/talks/william_li/up-next " target="_blank" rel="nofollow">https://www.ted.com/talks/william_li/up-next

 

you will begin to get a sense of what this diet consists of. You can pause the talk and study the graphs and charts and see that for all cancer types there are certain foods that are most often correlated with better outcomes.

 

This leads me to another important point and that is that food synergy is also extremely important. While Li’s studies highlight anti-cancer foods from highest to lowest value, the cumulative effect of combinations of these foods is less well documented but proven nonetheless. I have learned that the phrase, “Everything in moderation,” should have the emphasis on EVERYTHING. Combining the best veggies, fruits, spices, nuts, seeds, grains, legumes, oils (and supplements, and lots of clean water) not only helps cover all your bases for maximum nutrition but also sets the stage for synergistic benefits that would be less likely from a more limited diet.

 

Another critical point is that diets high in protein are also contraindicated as protein, like sugar, drives cancer. Whether you follow the Med/vegan route or the ketogenic protocol, protein is always limited. You can learn a bit more about this by reading papers or watching videos from Dr. Valter Longo, who is with the University of Southern California. Longo has also recently published a book I would recommend called, The Longevity Diet. Some of Dr. Longo’s most important work is related to fasting and the associated health benefits, and also the impact of fasting on chemotherapy, which is tremendous. I believe that there are trials based on his work being conducted at a number of medical centers around the world, including MD Anderson. You can learn more by checking out these sites:

 

Dr. Valter Longo - Fasting Cycles Retard Growth of Tumors

https://www.youtube.com/watch?v=LGafhm1cuSI "" target="_blank" rel="nofollow">https://www.youtube.com/watch?v=LGafhm1cuSI " target="_blank" rel="nofollow">https://www.youtube.com/watch?v=LGafhm1cuSI

 

Fasting: Awakening the Rejuvenation from Within | Valter Longo | TEDxEchoPark

https://www.youtube.com/watch?v=dVArDzYynYc&t=30s" target="_blank" rel="nofollow">https://www.youtube.com/watch?v=dVArDzYynYc&t=30s

 

Dr. Valter Longo On Fasting, Ketogenesis + Low-Protein Diets FULL INTERVIEW

https://www.youtube.com/watch?v=iE__akaI6iI&t=683s" target="_blank" rel="nofollow">https://www.youtube.com/watch?v=iE__akaI6iI&t=683s

 

Lastly, I have recently been listening to talks and interviews with Professor Thomas Seyfried about the ketogenic diet and metabolic therapies for cancer. Here are some good links:

 

Cancer as a Metabolic Disease wtih Dr. Thomas Seyfried | Long Version

https://www.youtube.com/watch?v=dm_ob5u9FdM "" target="_blank" rel="nofollow">https://www.youtube.com/watch?v=dm_ob5u9FdM " target="_blank" rel="nofollow">https://www.youtube.com/watch?v=dm_ob5u9FdM

 

Paris 2017 Round Table: Re-Thinking Cancer

https://www.youtube.com/watch?v=U5pjAINekSk "" target="_blank" rel="nofollow">https://www.youtube.com/watch?v=U5pjAINekSk " target="_blank" rel="nofollow">https://www.youtube.com/watch?v=U5pjAINekSk

 

My Kid Cures Cancer

https://www.youtube.com/watch?v=0FALEe0EZUc "" target="_blank" rel="nofollow">https://www.youtube.com/watch?v=0FALEe0EZUc " target="_blank" rel="nofollow">https://www.youtube.com/watch?v=0FALEe0EZUc

 

While for many people the ketogenic diet is a fad, it has actually been around since the 1920s, and when properly applied has been effective in treating epilepsy and other conditions that have failed to respond to medication. For our purposes, the primary goal of the ketogenic diet is to deprive cancer cells of energy, so good fats are the hallmark with limited protein and even fewer carbs, as I understand it. I cannot make sense of the opposing recommendations between this diet and the Med/vegan anti-cancer diet, but there definitely seems to be great value in both, and there is clearly crossover between the ketogenic diet and Dr. Longo’s fasting regimen. I would only caution you to avoid diving into the ketogenic diet without supervision as so many of the targeted (and limited) foods seem to contradict the anti-cancer protocol recommended by Li, Longo and others.

 

In this regard I would recommend Dr. Nasha Winters, an integrative doctor in Colorado at the clinic, Optimal Terrain. https://optimalterrainconsulting.com/ "" target="_blank" rel="nofollow">https://optimalterrainconsulting.com/ " target="_blank" rel="nofollow">https://optimalterrainconsulting.com/ "" target="_blank" rel="nofollow">https://optimalterrainconsulting.com/ "" target="_blank" rel="nofollow">https://optimalterrainconsulting.com/ " target="_blank" rel="nofollow">https://optimalterrainconsulting.com/ " target="_blank" rel="nofollow">https://optimalterrainconsulting.com/ "" target="_blank" rel="nofollow">https://optimalterrainconsulting.com/ " target="_blank" rel="nofollow">https://optimalterrainconsulting.com/

 

I learned about her in these interviews:

 

The Metabolic Approach to Cancer: Dr. Nasha Winters

https://www.youtube.com/watch?v=kbXvJuojV44 "" target="_blank" rel="nofollow">https://www.youtube.com/watch?v=kbXvJuojV44 " target="_blank" rel="nofollow">https://www.youtube.com/watch?v=kbXvJuojV44

 

Fasting, Cancer Prevention & Mitochondria Health - Dr. Nasha Winters

https://www.youtube.com/watch?v=KvnzkoCfLno "" target="_blank" rel="nofollow">https://www.youtube.com/watch?v=KvnzkoCfLno " target="_blank" rel="nofollow">https://www.youtube.com/watch?v=KvnzkoCfLno

 

Here is a link to a speech she gave at the Believe Big Fundraiser for Johns Hopkins Research:

 

LISTEN TO THE 19-MINUTE KEYNOTE SPEECH

 

https://www.youtube.com/watch?v=p040S3MPo7Y&inf_contact_key= target="_blank" rel="nofollow">https://www.youtube.com/watch?v=p040S3MPo7Y&inf_contact_

 

And here is a link to many more talks and interviews with her:

 

https://optimalterrainconsulting.com/ "" target="_blank" rel="nofollow">https://optimalterrainconsulting.com/ " target="_blank" rel="nofollow">https://optimalterrainconsulting.com/ "" target="_blank" rel="nofollow">https://optimalterrainconsulting.com/ "" target="_blank" rel="nofollow">https://optimalterrainconsulting.com/ " target="_blank" rel="nofollow">https://optimalterrainconsulting.com/ " target="_blank" rel="nofollow">https://optimalterrainconsulting.com/ "" target="_blank" rel="nofollow">https://optimalterrainconsulting.com/ " target="_blank" rel="nofollow">https://optimalterrainconsulting.com/ media/?inf_contact_key=f94eb0dadd8c48a00e261e0576d68561195f0a5472b7cc73d8b87ac88c79046c

 

I have been very impressed with her breadth of knowledge and non-traditional approach to health and healing for people with cancer. I would also highly recommend her book, The Metabolic Approach to Cancer: Integrating Deep Nutrition, the Ketogenic Diet and Non-Toxic Bio-Individualized Therapies. The focus at her clinic seems somewhat aligned with a clinic outside of Chicago, Illinois that I visited in 2015 called the Block Center for Integrative Cancer Treatment.http://blockmd.com/The "" target="_blank" rel="nofollow">http://blockmd.com/The " target="_blank" rel="nofollow">http://blockmd.com/The founding doc there, Dr. Keith Block, also has written a book that I would recommend called Life Over Cancer that has good information on diet, supplements and other “terrain” type issues, also covered in Dr. Winters’ book.

 

I’ll stop here and let you consider all of this information. I would be happy to discuss any of this with you in greater depth, including juicing and fasting (which I have done a lot of).

 

Let me just add that, to my knowledge, the top oncologists for urachal cancer in the US are Dr. Arlene Siefker-Radtke at the MD Anderson Cancer Center in Houston; Dr. Lance Pagliaro at the Mayo Clinic in Rochester, MN, who trained Dr. Radtke; and Dr. Jonathan Rosenberg at Memorial Sloan Kettering in NYC. If there is any way I can assist you should you be considering a trip to the US please do not hesitate to ask. I wish you all the best.

 

Paul

 

   

 

I have stage 4 urachal andocarcinoma with mucin I had cytoreduction with hipec in February of this year. Unsure if I should proceed with additional chemo seeing how I’m NER at this time. Any thoughts?

Chemo treatment for urachal cancer

by dstef69 on Fri May 10, 2019 05:30 PM

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Hi Michael,I did reply to your message before but I dont know what hapened,maybe the message didn't go through(I did reply in private,maybe thats why) Anyway,Im in the hospital for the 4th chemo sesion,and everything it's ok(a litlle nausea on the last 2 days of the cycle but they give me meds for that).The cisplatin is a litlle hard on my ears,couple days ago I had a hearing test and seems like i have tinnitus and a litlle high frequency hearing loss(it might be from my line of work and hunting to)but I'll have another test when I'm comming back for the 5th cycle.I dont know if I mentioned this but before I started the chemo tratment I had a CT scan which showed couple small lymph nodes on my left lung and a bigger one(4mm/7mm)on the right lung.I was a litlle bit affraid but we repeat the CT scan after two chemo sesions and everything was the same,so the lymph nodes are the same size,they didn't shrink,didn't grew,so they were there before the cancer(I grew up in Eastern Europe,alot of pollution,the Chernobyl incident,etc and seems like the majority of europeans have same problem)I'm able to fly,the climbing and descending it's ok but i'm having a litlle trouble at 35000 ft(the good think is that is only for 35-40 min so I can endure).That's about it,please let me know if you got the message.

Daniel

RE: Urachal Adenocarcinoma

by Schuls on Fri May 10, 2019 09:03 PM

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Linda.

How are you doing today? I have been diagnosed with Stage 4 and similar to you. Please let me know what your journey looked like and how you are today.

Susan

RE: Urachal Cancer Survivor

by Schuls on Fri May 10, 2019 09:55 PM

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I am stage 4  and spread to peritoneal wall. Had Cytoreduction with HIPEC in Washington DC with Sugarbaker.  My PCI score is a 3 with cyto reduction of a 0   

I am not getting any adjuvent thearphy 

Please let me know your journey

Thank you 

Susan 

RE: Chemo treatment for urachal cancer

by Michaelscrosby on Sun May 12, 2019 04:59 AM

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Hi Daniel, glad to hear it’s going well. The first 4 rounds for me went smoothly, round 5 and 6 were difficult as my body had finally had all the chemo it could handle. So hang in there and hunker down for the last 2 rounds. But I made it through all 6 rounds and so can you. I had and still have the same spots in my lungs like you, all remained stable and haven’t changed in over 2 years so they say it’s probably nothing to worry about but they still check and document them with each passing CT scan. I’m coming up on two years since my last chemo treatment and up until now I fly down to Houston every three months for follow up CT. Actually they just graduated me to scans every four months as I approach my two year post chemo. In fact I will be at MDA on May 29-30 for my next CT, if you will be there then perhaps I could come visit you, please let me know. Regarding the ringing in your ears, I had the same thing from the cisplatin and I’m sorry to let you know that two years post chemo and no improvement for me. Hopefully yours will go away. But for me I just view it as a small price to pay for a chance to be cured. Just turn your favorite music up a little louder and you won’t even hear the ringing. Ha-ha. Actually it’s when it’s quiet that it bothers me most, I sleep with fan or sound machine and it seems to help. Hope the rest of round 4 goes smooth and wish you the best for your final 2 rounds. Safe travels and keep me posted with updates.

RE: Urachal Cancer Survivor

by Schuls on Tue May 14, 2019 09:57 PM

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I have reached out to MD Anderson and they dont have you on the calling board.  IS there another way to reach you.

RE: Urachal cancer is eligible for phase one clinical trials

by christobell1 on Sun May 19, 2019 01:05 PM

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Hi Paul Have you read- How to Starve Cancer by Jane Mclelland ? I am looking at this protocol for my husband. It is based on diet and off label drugs and mediation. Would be really interested if anyone has read it - it is quite complicated! Thanks Christina

RE: Urachal cancer is eligible for phase one clinical trials

by pwinter on Sun May 19, 2019 01:47 PM

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On May 19, 2019 1:05 PM christobell1 wrote:

Hi Paul Have you read- How to Starve Cancer by Jane Mclelland ? I am looking at this protocol for my husband. It is based on diet and off label drugs and mediation. Would be really interested if anyone has read it - it is quite complicated! Thanks Christina

Hi Christina. I have not read it but thank you for mentioning it. I just ordered it. Am listening to her interview with Chris Wark right now.

RE: Chemo treatment for urachal cancer

by dstef69 on Sun May 19, 2019 03:40 PM

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Hi Michael, thank you for the reply. I'm glad that you're doing well! I'll be in Houston on the 29th for blod collection (8.00am), hearing test (9:00am) and follow up with Lidia (11:00am). After that hopefully I will be admitted in the hospital for the 5th chemo so please stop by if you have some time. I'll try to post my room#, or you can ask the admission to find out.

The tinnitus doesn't bother me that much, but the hearing loss it's very annoying, specially in a noise environment. I'm hoping that's not going to get worse with the next chemo treatments.

I hope to see you soon!

Daniel Stef

RE: Urachal cancer is eligible for phase one clinical trials

by christobell1 on Sun May 19, 2019 06:10 PM

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Hi Paul Great- let me know what you think. Kind regards Christina
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