Urachal Cancer Survivor

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RE: Urachal cancer is eligible for phase one clinical trials

by pwinter on Sun Apr 08, 2018 01:12 PM

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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?



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



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



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



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



Paris 2017 Round Table: Re-Thinking Cancer



My Kid Cures Cancer



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/


I learned about her in these interviews:


The Metabolic Approach to Cancer: Dr. Nasha Winters



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



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






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


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 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.






RE: Urachal cancer is eligible for phase one clinical trials

by Ribz99 on Sun Apr 08, 2018 05:41 PM

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Hi Paul - I wanted to thank you for all the information you provided for all of us. So helpful and I, also, believe that diet is the key to surviving this dreaded disease. Did you have any surgery for the Urachal Cancer? Did your change in diet show your tumor subsided? With appreciation for the gift of sharing your knowledge... Robin

RE: Urachal cancer is eligible for phase one clinical trials

by Ribz99 on Sun Apr 08, 2018 05:44 PM

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Sorry Paul.. I meant to ask you what kind of surgery did you have?

RE: Urachal cancer is eligible for phase one clinical trials

by pwinter on Mon Apr 09, 2018 01:00 AM

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Hi Robin, I'm glad you found the info useful. There's not a lot of super effective conventional medicine for most cancers. I've been amazed to learn of the many ways we can make ourselves healthier, and also the many ways that we become sick. As for my surgery, I had the bladder dome and urachus removed along with the tumor. I didn't change my diet/lifestyle till after the fact so there's nothing really to compare in terms of before and after. Best of luck with your journey. Happy to discuss any of this anytime.


RE: Urachal cancer is eligible for phase one clinical trials

by MarksMom on Thu Apr 26, 2018 08:57 PM

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Mark, after three rounds of the infusion cycle recommendsd by Dr. Seifker-Radtke, became too sick to continue chemotherapy. He was hospitalized twice with critical blood electrolyte imbalanes. He is still receing magnesium infusions weekly. It has been a month now since his last infusion and, almost daily, is struggling with severe vomiting that comes almost without warning and very forceful. He is not nauseated. Has anyone else experienced this or can offer ideas as to its cause or ways to alleviate it? 

He is scheduled for another CT scan next week. The one done in the hospital his first infusion in early April was done without contrast but showed several new areas lighting up in his abdomen and one in his lungs. They don't think any are indicative at this fime of recurrence but are repeating to make sure, this time after an infusjon of fluids to help his kidneys, with contrast.

Needless to say, my mom radar is on full alert and I'm worried. He is scheduled to meet the surgeon at Washington University in St.Louis that can do the en bloc resection on May 13. 

Just asking for advice, reassurances and questions I should ask. 


RE: Urachal cancer is eligible for phase one clinical trials

by MarksMom on Thu Apr 26, 2018 09:27 PM

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His first hospital stay, not first infusion. His last cheno was completed March 30.

RE: Urachal Cancer Survivor

by Kiki_d on Mon May 21, 2018 12:23 AM

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Thank you for sharing this survival story! I am 33 year old female from Dublin Ireland and I’ve just been diagnosed with urachal cancer quite advanced it spread to my ovaries and also spine, I’m scheduled for my halfway scan tomorrow to see if the chemo is working but this story is really inspirational it’s very similar to mine and I also have two young boys so thanks again!

RE: Urachal Cancer Survivor

by Agolez1 on Tue Jun 05, 2018 12:38 AM

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Hi there- I’m also 33 years old and was diagnosed just last week. I am inspired by these posts, but definitely sad and totally freaked out. I keep alternating between feelings of hope and utter despair. But I am glad to know there is a community of folks that know what this is like and can all support one another...

RE: Urachal Cancer Survivor

by pwinter on Thu Jun 07, 2018 03:01 PM

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On Jun 05, 2018 12:38 AM Agolez1 wrote:

Hi there- I’m also 33 years old and was diagnosed just last week. I am inspired by these posts, but definitely sad and totally freaked out. I keep alternating between feelings of hope and utter despair. But I am glad to know there is a community of folks that know what this is like and can all support one another...


Yes, this diagnosis is a game changer. I have submitted a few posts over the past year or two regarding some of the things I have learned so I won’t use up space repeating myself. But I would like to add a few thoughts. Firstly, during times of stress and fear, I have always found it helpful to listen to or read inspiring stories by people who have struggled and endured, particularly with cancer. Two sites I would recommend are chrisbeatcancerhttps://www.chrisbeatcancer.com/category/natu

and mykidcurescancer

www.mykidcurescancer.com .

These links have interviews and more that have helped me through many hard days and nights.


Second, never underestimate the powers that be, whether prayer, inner resolve, inspiration, guided imagery, the placebo effect, and on and on. Cancer often defies western medicine and while our docs can be miracle workers, there’s a lot more going on than we can imagine. In this regard, I can’t emphasize enough the role of diet and nutrition in your recovery. Be fanatical – your body will respond. Add to that good quality sleep, exercise, and any lifestyle changes that will help you better handle and/or reduce your stress levels. As you learn more about sickness and health you will better understand how badly we abuse our bodies and how resilient we are when we actively promote healing and healthful practices.


And last, do everything you can to find a surgeon who has experience with urachal cancer. He/she is your first line of defense and you should not hesitate to seek a more qualified surgeon if it is within your means. In the meantime, do your research, strengthen your body, get your monkey brain under control, and reach out to friends and family for support.


I wish you the very best.




RE: Jane's 100th Day of Medicine

by Merel on Mon Jun 25, 2018 10:38 AM

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On Sep 28, 2006 12:00 AM Urachualknower wrote:

Hey everyone As you may remember from my earlier entries, Jane was diagnosed with her 3rd reoccurence in March. Since then she went into an experimental trial (drug has no name at the time) and after 100 days on the medicine (with no side effects), her cancer has not grown, spread and appears to be shrinking -- though ever so slightly. They are beginning a new trial with this drug and it will double the daily pill dose Jane is currently taking. I encourage anyone who has tired things that failed to take a look at this protocol. We'll know more in December when hopefully after another 3 months on the meds, the tumor will conclusively shrink. Regards
Hi! I know this was posted so many years ago, but I couldn’t really find out how jane is doing now and what experimental drug she was on at the time? Does anyone have any information about dr. petrylak? Or the drug jane was on seceral years ago? It sounds very promising and I would be really greatful for any information anyone might have! Positivity for everyone here, Merel
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