Urachal Cancer Survivor

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RE: Urachal Adenocarcinoma

by Schuls on Wed Jun 12, 2019 11:17 AM

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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)

My wife's fight is over.

by mmb617 on Wed Jun 12, 2019 11:56 PM

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I wanted to let those who might have read my wife's story in previous posts on this board know that after 4 hard years of fighting she passed away on Sunday June 9, 2019.

A quick recap of major events goes something like this:

July 2015 CT scan shows 5 cm mass in dome of bladder.

July 2015 partial cystectomey surgery removed tumor 6.0cm x 4.5cm x 4.0cm. Pathology report showed no lymph node involvement and all clear margins.

November 2015 Stomach cancer confirmed. This was another primary not a metastasis from the bladder.

December 2015 started Cisplatin, Herceptin, 5FU chemo. Had 6 rounds ending late March 2016.

April 2016 PET/CT shows no evidence of disease.

July 2016 PET/CT shows no evidence of disease.

November 2016 admitted to hospital with a lot of blood in urine. Cystoscopy confirms tumor in bladder again.

November 2016 surgery to remove all or part of bladder turns into open/close as surgeon says cancer has spread to abdomen and he can't get it all.

December 2016 started on new immunotherapy drug Tecentriq and continues on with Herceptin as well.

February 2017 CT scan shows dramatic decrease in metastatic burden in the abdomen. Continues on with Tecentriq and Herceptin.

February 2018 CT scan shows progression of abdominal tumor. Tecentriq stopped.

March 2018 started Folfox chemo plus Herceptin. Received a total of 25 treatments.

June 4, 2019 admitted to hospital with subdural hematoma, sepsis, UTI and AKI.

June 9, 2019 blood pressure bottomed and went into cardiac arrest.

Some important notes:

The treatment apparently worked well with the stomach cancer as no evidence of it was found after 2016. The urachal cancer was what just couldn't be kept under control.

I know most people don't get more than 8-12 cycles of Folfox and Sue had 25. The reason is the doctor was running out of alternatives and said he'd keep her on it as long as it was working. Her last CT scan in May 2019 did show some progression but she had missed a couple cycles of chemo with a lung problem (which was said to be a reaction to all the chemo) and the doctor was hopeful that once she was back on schedule the disease would stabilize.

The end came quick. She was out shopping with her friends one Sunday and a week later she was dead. I don't think she had any pain as I was at the hospital talking to her Saturday night and she said she was not in pain even though she was not on any pain meds. Early the next morning I got a call saying she was being moved to the cardiac ICU and by the time I got to the hospital she was gone.

I hope this tale doesn't freak out anyone battling this terrible disease, that's not my intention. I just wanted to document her long hard journey.

RE: Urachal cancer is eligible for phase one clinical trials

by pwinter on Sat Jul 27, 2019 12:31 AM

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On May 19, 2019 6:10 PM christobell1 wrote:

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

Hi Christina,

Working my way through the book for the second time. What a tremendous resource. If I found myself in need, this is where I would start. I've actually just requested my doc call in a Rx for me for dipyridamole as my fibrinogen levels are always toward the high end of the scale, despite the aspirin and supplements I take. Regarding McLelland's recommendation for metformin, I learned about this awhile back and have used metformin in the past but it was hard for me, and as I discovered subsequently, is contraindicated for people with an MTHFR defect unless they supplement with B12 (which I did not understand at the time) as it lowers your B12 levels. 

The most basic place to start, I would think, would be McLelland's personal regimen including her top guns berberine, metformin, dipyridamole and aspirin, and a statin (lovastatin for its mild effects) along with an NSAID (she advises to stop taking the aspirin if you’re taking an NSAID). Bear in mind that she oftentimes recommends other, potentially better meds and combinations in her more technical specs in the Metabolic Protocol section. I find it very encouraging that she even details how to combine her protocol with low-dose chemotherapy. Her regimen targets the stem cells and the chemo targets the fast-dividing cells. She recommends using both treatment modalities when time is a factor as her stem cell-targeting approach can take longer to have an impact.

It would be best to find an integrative oncologist or at least a functional doctor or ND who could guide and prescribe and monitor. McLelland also mentions other supplements, of course, and IV Vit C and a few other treatments that only certain docs/clinics provide. If you contact her https://www.howtostarvecancer.com/contact/ she may be able to provide a starting point for finding the right docs in the US and ultimately in your area. And she advocates a fanatically careful diet (and exercise and stress reduction) without which you're just swimming against the current.

Toward the end of the book she adds an impressive amount of advice regarding interfering with and ultimately destroying the cancer's metabolism and these are things an integrative oncologist or ND could help with. This is the sort of information for which I’ve been searching for years.

Just this morning this video mysteriously appeared in my You-Tube feed: This could change the way cancer is treated | The Economist https://youtu.be/2-YrZMIK37U which is very encouraging information and precisely what Mclelland advocates. Actually I think it’s the clinic she references in her book.

Best,

Paul

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