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Schuls's Message Board Messages

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RE: Urachal Adenocarcinoma

by Schuls - June 12 at 11:17 AM

On Jun 07, 2006 12:00 AM Ccdgal wrote:

Subject: Urachual Adenocarcinoma Screen Name: UrachualknowerDate: 6/5/2006 Msg. #: 1 of 1Hi I've read alot of entries from urachual survivors and the newly diagnosed. My sister was diagnosed with metastatic urachal cancer in 5/02. 4 years ago, she was offered no treatment options since none existed except surgery to remove a 7 cm tumor. 2 years ago, she had a reoccurence in her pelvic lymphnodes and was given a 4 month regime of irnotecan and avastin. The doctors were very hopeful that the avastin had worked but, this march (another 2 years) she had another reoccurence in her pelvic lympnnode. This time, it is not sugerically removable. Her dr. at Columbia Pres. is putting her in a trial for a brand new drug that he feels will benefit her. I urge all newly diagnosed patients to contact Dr. Dan Petrylak at Columbia University in Gentiuroligical cancer to get info on this trial (it is not a chemo but rather an anti-antigensis drug similar to avastin with realtively little side effects) and use it to challenge the opinions you've rec'd to date. I saw others using a chemo pill protocal and plan to challenge why we are not going in this direction. As an FYI -- the trial starts 6/21. Dr. P is also associated with the top urachual surgeon world-wide (Dr. Olosson) and developer of the bladder pactch so complete removal of the bladder is not necessary. Since I'm new to this site, please forward this message around. To the newly disgnosed....THIS IS NOT, NOT, NOT, NOT the death sentance that it may seem to be at first glance of the research. My sister has had a GREAT quality of life, happily attended her children's weddings and MBA graduations, purchased a NJ shore home and even babysits for my 4 and 6 year olds. That is not someone who even with 2 surgeries and 1 chemo regime is not living life. Please let your loved ones know the success stories. I only wish I had found a few 4 years ago to tell my sister.
lease let me know how is your sister today? I am 52 with 3 children and the day I celebrated my 25th anniversary was when I had blood in the urine. I’m stage 4 urachal I had surgery on 2/9/19 and very scared and without a dedicated oncologist. I had read your post about your sister and how she bought a house and 2 year reoccurrence How is she and what happened after the 4 years ( reoccurrence every 2)

Urachal cancer survivors

by Schuls - June 11 at 12:45 PM

If you have urachal cancer and have lived beyond 3 years please reply with what treatments you have had. I have been to the 5 major Drs in USA and told no treatmebtbother than the mixture md andrrson chemos everyone however prognosis still less than 3 years. Looking for hope

RE: Urachal Cancer Survivor

by Schuls - May 14 at 9:57 PM

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

Looking for anyone to give me direction. I was diagnosed 2/9/19 after cytoreduction surgery with HIPEC have not had any other chemo.  Told to be on close watch.  Spread to dome of bladder, ovaries, upper and lower omentum and in peritineal wall. Told that the peritoneal wall is a death sentence. 

Looking for some hope and to learn what others have done to beeat the peritoneal wall

RE: Urachal Cancer Survivor

by Schuls - May 10 at 9:55 PM

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: Urachal Adenocarcinoma

by Schuls - May 10 at 9:03 PM

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

Stage 4 urachal in peritoneal-

by Schuls - May 10 at 6:11 PM

Any thoughts ?
Stage 4 from bladder, ovaries, upper lower omentum and peritoneal wall wall. Is there anyone that has tried anything and survived ? Please help. I’m in desperate search of a survivor of The peritoneal wall

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?

Urachal Cancer Survivor

by Schuls - April 30 at 7:15 AM

I had cytoreduction with hipec for urachal andocarcinoma with mucinin stage 4 to peritoneal wall. I’m about to have a stomach port with Gemcitabine Any thoughts anyone?!?!
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