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

RE: Urachal Cancer Survivor

by SMMile on Tue Dec 24, 2019 01:03 AM

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Lasted @ 7 months on Opdivo portion, then toxicity too much. Groin lymph nodes still stable, may have surgery, lymphectomy. Find another clinical trial, 1st phase, if it gets worse.

RE: Urachal Cancer Survivor

by Drsongbird on Tue Dec 24, 2019 08:57 AM

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On Dec 24, 2019 1:03 AM SMMile wrote:

Lasted @ 7 months on Opdivo portion, then toxicity too much. Groin lymph nodes still stable, may have surgery, lymphectomy. Find another clinical trial, 1st phase, if it gets worse.
Dear SMMile, Let me recap: you were on Opdivio for 7 months, then the drug was to much for your system. You indicated your lymph nodes were still stable, but you are still thinking about lymphectomy surgery. You are looking through another clinical trial which tells me you have been through one already. You are looking to be involved in this clinical trial if things get worse. I hope I have understood. SM, what you are giving a is a report on where you are now; I am very glad for the success you have already had. It also sounds like you are on the verge of making some major decisions in your treatment plan. I may be incorrect, but it feels to me like you are making these decisions on your own, without the benefit of qualified cancer trained medical help like a medical doctor, a medical social worker or another individual that can share their experience with you. I know from my own experience that having someone in your court that has been where you are, worked with people who have your diagnosis ( which you didn’t share), or certainly a medical professional who has successfully treated individuals with your medical diagnosis. Nothing is more believable than someone who has been successful and can share their knowledge and experience with you, applying it to your specific situation. If you have not already done so, I would advise you to contact one of the Major medical institutions that deal with cancers of your type like Mayo’s, The Cleveland Clinic, NorthWestern University ( Chicago), MDAnderson in Houston, and so many, many more. They have knowledge and experience to offer you and they will walk with you as you make you choice. They can coordinate your care and create a treatment plan that is directly aligned with your best interests. You will have a place to ask questions and get answers. And you will have a focus and direction for your care. Please don’t give up: we are here to exchange information and support each other in our walks through cancer. You need not deal with this alone. When I started this thread many years ago, I had walked through a good deal of my urachal cancer diagnosis alone (1994 Urachal Cancer surgery) as a 40 year old single dad with four small children who were my priority. There was no internet, and very very little about urachal cancer. 25 years later I am blessed to say that I have had no recurrence of my urachal cancer and I may in fact be the longest living documented UC survivor. I only had surgery. No radiation or chemo for that cancer. I am not lucky. I had help from everywhere that offered it. I chose the absolute best medical care/surgeon that was available. I chose the surgeon who had the most survivors at that time. That strategy and a lot of prayer worked for me. I do not mean to imply that the road has been easy; it has been incredibly difficult. Over the years I have had colon cancer, thyroid cancer, and most recently I am in remission from high-risk multiple myeloma. I have had two PEs, a clot that plugged my portal vein. I have had more than 20 major surgeries. I’ve had two stem-cell transplants, have lived through an extended coma resulting from swine flu, and so much more. I could literally fill this page with medical issues and procedures I’ve had. I tell you all of this because I want you to know the road is not easy. It’s damn difficult. My advice to you is get the best care you can find. Don’t settle for something close. Face the next thing like you faced the last thing one day at a time. Surround. Yourself with people who support you and who will provide you with what you need. Love your family. Except help even if you hate doing that. Listen more than you talk. Work hard. If you have a choice choose to, get up and do. Rest when you need to rest. Tell the important people in your life that you love them. It’s hard but you can do it. Take risks. Love. Get away from the people who drag you down. When you have eliminated them from your life, you will be surprised how much time you have to focus on getting healthy. Pray, pray, pray. It works. Find someone to share the intimacy of your struggle with-the big things and the little things. Keep trying and don’t ever waste your breath on asking why anything. Why doesn’t matter. Dealing with things does. That’s how I’ve made it through. I love you all and I am so proud of what you have made this thread. Thank you all. Dr. Songbird 12/23/2019

RE: Chemo treatment for urachal cancer

by Fiona2020 on Thu Jan 02, 2020 04:20 AM

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On May 12, 2019 4:59 AM Michaelscrosby wrote:

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.

All Urachal CA survivors

soon I start cycles of 5 day 5FU/leuko, cisplatin and gembcitabine (2 w off, repeat) at MDA for lung mets 2y after initial surgical removal. What can i expect as side effects? How can i best prepare? What has been outcome?

Thank you

RE: Chemo treatment for urachal cancer

by dstef69 on Thu Jan 02, 2020 05:22 PM

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HI Fiona, I’m Daniel, I was diagnosed with urachal cancer Dec 2018. Jan 13 ’19 I had laparoscopic surgery in Atlanta (7x6x5.5cm tumor,partial bladder, urachus and umbilicus removed, no lymph nodes found). 6 weeks after the surgery I started kemo,6 cycles of GEM FLP(dexamethasone,leucovorin,5FU,cisplatin and Gemstar/gembcitabine)at MD Anderson which I finished middle of June ‘19 . Same like you 1 week on 2 weeks off. The place is great, good food, the doctors are with you all the time, talk with them if you have any problems. They asked me to walk because my body retained water so I walked around 2 miles every day on the skybridge between main building and mayo clinic which it’s about .25miles one way. A little bit of nausea at the end of every cycle but I was good enough to fly back home (Atlanta GA) The treatment side effects was Tinnitus and a little hearing loss which started after the 2ndcycle. I saw an ear dr. there but it wasn’t too bad and actually I still have it but learned to ignore it.The biggest problem for me is neuropathy on my hands (numbness on my palms) and my feet. Actually the hands aren’t that bad but the feet are numb all the time which is hard especially winter time (getting cold very fast).It started after the 5thcycle and got worse after that. I took magnesium, gabapentin but it didn’t help. The dr. said that it might go away after 1 ½ to 2 years. Overall the treatment didn’t worked for me, on the last ct scan (dec21’19) they found small nodules in my lungs so I’ll be back January 24 for full body scan/bones and go from there. I wish you all the best and I Hope the treatment will work for you!

RE: Urachal Cancer Survivor

by SMMile on Fri Jan 03, 2020 08:24 PM

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Thank you for your inspiration and all of the other advice and information. I am a patient of Dr. Seifker at MD Anderson, and I am scheduled for a consult with one of their best surgeons for a possible lymphectomy of the deep groin lymph nodes. Just curious, what stage were you when you had your surgery years ago. I was IIIb.

RE: Urachal Cancer Survivor

by dstef69 on Sat Jan 04, 2020 06:23 PM

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Same here IIIB

Histologic Grade: G2: Moderately-differentiated

Primary Tumor: pT3b

Regional Lymph Nodes: pNX

RE: Urachal Cancer Survivor

by SMMile on Sat Jan 04, 2020 09:41 PM

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Fight like hell !
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