Urachal Cancer Survivor

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RE: Urachal cancer is eligible for phase one clinical trials

by Michaelscrosby on Sun Mar 18, 2018 02:54 AM

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On Mar 18, 2018 1:17 AM Angie420 wrote:

Thank you for your reply I am so sorry for your loss this cancer is so brutal . I am going to try and contact md Anderson to see how I could go about getting a second opinion.  I just don't know how my family will afford to travel to Texas.  Guesswe will cross that bridge when we come to it.   

I had to make the same decision when I was diagnosed to go to Texas from Atlanta. Best decision I ever made to go to Texas to M.D. Anderson. Go, at least get Dr Seifkers opinion, you won’t regret it. Put money out of your mind, it means nothing compared to health. Talk to MD Anderson about assistance.

RE: Urachal Cancer Survivor

by PhilA on Sun Mar 18, 2018 03:10 AM

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On Mar 11, 2018 5:35 PM vtoole wrote:

On Mar 11, 2018 12:27 PM PhilA wrote:

On Oct 13, 2017 10:10 PM dzkimmi wrote:

Just posting to offer hope to any of you diagnosed with this dreaded disease.

I am a 22-year survivor of adenocarcinoma of the bladder, urachus. I was in my early 30s when I was diagnosed, with two small children. It was a scary time, but I am still here! I hope my story helps you, and gives you some hope! Whatever you do, dont listen to all the doom & gloom. You can beat this, but you have to believe you can! 

 I'll tell you a little about my cancer, and what they did for me. Back in June of 1995, I had blood clots in my urine & that sent me to a wonderful urologist, Dr Richard Nichols in Thousand Oaks, California. He saved my life! He did test after test, until he found something irregular. Any other doctor would have probably sent me home after the 3rd or 4th 'normal' test result. He just kept on keeping on! I had blood tests, various xrays, cat scans, cystoscopy, colonoscopy, had scopes put everywhere! Finally found the tumor with an xray taken as I was peeing (gross!!!). Because I was young, healthy and no longer was presenting any symptoms, he originally thought I had a cyst on my bladder.

He said he was not sure, though, so we scheduled surgery right away. He removed the tumor and the tip of my bladder. The tumor had gone through the bladder wall, just barely. It wasn't until I woke up from the anesthesia and saw my husband crying that I knew something was wrong! He told me it was cancer. I had a tumor a little bigger than a golf ball. After discussing things with Dr. Nichols and finding out that the borders were clear and there was no lymph node involvement, I felt a little better. But he had never seen a tumor like this, and other urologists he asked had not either. Our pastor came to visit and I immediately thought I was about to die! He was just being a friend, and being supportive - he was not there for my last rights. Whew! After the surgery an amount of time went by before we knew exactly what kind of cancer, the stage, etc. 

Dr. Nichols was great, he found me a very talented oncologist, Dr. Evans Slater in Ventura, California. Prior to my visit, Dr Slater did a bunch of research. The cancer is very rare, as you know. At the time there was very little information on this cancer. The internet was not as useful as it is now. He probably had to call tons of people to find info. He explained that this cancer is normally found in much older people, mostly men. Smoking and asbestos were the things, at that time, they thought caused it. Neither of these things were the case with me! I have never smoked! 

Anyway, Dr Slater wanted more info, so he sent me to the USC Norris cancer center to have my tumor evaluated by their tumor board. The guy there was kind of out there & wanted to immediately remove my bladder and make me a new one! I think he wanted to experiement on me but I was not going to go for that idea! They also agreed that this was a super rare cancer, and he also had never seen a case prior to mine. 

Dr Slater agreed with me that the USC dr (I cant remember his name) was too extreme in his ideas, so he did a bunch more research and decided to hit me with chemo & radiation and hope to get any 'cells' that may have broken off from the tumor. I was young, healthy (other than the cancer), and he felt that I could tolerate the treatment. I had 6 weeks of radiation combined with 6 rounds of chemo.

The combination wore me down pretty quickly. I had 5FU and Cistplatin (later changed to carboplatin) chemo treatments. The 5FU was in a pump that I kept on for 5 days each month. The cistplatin was given to me in the hospital & I had to stay overnight because it was such a dangerous drug. It could cause kidney damage, nerve damage & hearing loss! I would have the cistplatin & they would monitor me all night long, and then I could go home after it was all given to me. I would then have the 5FU for 5 days. A nurse would come to my house and unplug me at the end of the 5 days (loved that day). Then I had 3 weeks to build my body back up. Then do it all again. I only had the Cistplatin for 2 rounds because after the second round of it I started getting ringing in my ears. My doctor then switched it to carboplatin, which was not nearly as toxic to my body.

I had two small children, 6 and 4 years old. I tried to be as normal as possible. I tried to stay positive and at the same time be honest with the kids. I went and watched all their sports, school things, and helped them understand that even thought I was sick, the medicines were necessary & hopefully curing me! Hopefully this taught them about hope & living for the moment. 

Towards the end of my treatment, maybe the 4th month I had to start taking some drugs to build my blood cells back up (neupogen/epogen??), but other than that no other major problems. I really was wiped out. It was like having a really bad flu for 6 months. Headaches, body aches, diarrhea, nausea, and weakness. Everything tasted and smelled like metal! I think they have much better meds now to help with those side effects. I took Zofran and that helped, but towards the end I couldn't even keep that down. I lost a ton of weight and was really weak, but it was only temporary.

I completed all my treatment Dec. of 95. Have been fine ever since. I did get some 'after effects' from treatment. I was put into premature menopause, I have some nerve damage in my spine that basically makes me jittery at times, but thats it. I am alive & well & live a nice, normal life! 

The treatment was not fun, I felt like crap for that full 6 months, but it was worth it :) I know not everyone is as lucky, but I think having a positive attitude and just going on with life really helps! I also believe in the power of prayer. My church family was always there ... 

You asked about the prognosis. Sadly, it was not good. But my doctor never told me how dire the outlook was - so I never knew! Ignorance is bliss sometimes. They said because I was stage 3, the odds of surviving more than 2 years was like 30% or something. After I was cancer-free for maybe 5 years, thats when he told me!  You just never know what the future holds. 

I will be praying for all of you! Hoping that you can come back in a few years and offer some hope & encouragement to others! 

I hope my story helps you feel a little more optimistic about things. Sometimes just hearing of someone else who has been through something similar & survived helps. Good luck!!!

Hi, Thank you for writing this story. I am a 6 year survivor of urachal cancer and went through a similar experience as you did when I was 44. All has been good so far, although my kidney function has been affected and I’m under the supervision of a nephrologist. Must be the cisplatin I took. Other than this blog, have you been involved in any awareness or fundraising campaigns for urachal cancer? I’m wondering if we survivors can put something together. Best, Phil
I was wondering the same thing. I recall someone (was it you?) who was doing “bikus urachas?” I think it would be wonderful to do a fund raiser for this rate and mostly unchartered disease.
Yes, that’s me. I lead the Bikus Urachus team and we’ll be participating in our 6th ride to conquer cancer this July. You can find our more about us at www.urachalcancer.com Or on our ride page at www.conquercancer.ca /goto/bikusurachus2018 Always looking for more riders and to help others get fundraising initiatives off the ground. Phil

RE: Urachal cancer is eligible for phase one clinical trials

by Ribz99 on Mon Mar 19, 2018 01:26 AM

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Personally, being treated directly by an expert will avoid any opportunity for mismanagement or mistakes.

RE: Urachal cancer is eligible for phase one clinical trials

by MarksMom on Tue Mar 20, 2018 05:31 PM

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Dr. Seifker-Radtke saw our son Mark as a consiltatiom, reviewimg his tests and files and meeting with him and developing a treatmemt plan for him. Mark's insurance covered much of the cost. His oncologist is following that plan. We may, at some point, returnfor a second consult, especially once all the initial treatment is done and we will want a plan for follow-up. 

It was expensive but we worked through their travel. All told, about $2500 out of pocket, but knowing this is the best plan available, money well spent. 

RE: Urachal cancer is eligible for phase one clinical trials

by Angie420 on Tue Mar 20, 2018 11:38 PM

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I wish the best for your son . thank you for your reply . I appreciate the info . After heavy consideration I had decided to remain here in Colorado.  The logistics of traveling there for treatment just seemed to hard with my little one in school . I hope I have made a good decision.  I feel pretty confidant in my surgeon. Guess we will see very soon.   Did your son have surgery to remove the tumor at Md Anderson? 

RE: Urachal cancer is eligible for phase one clinical trials

by MarksMom on Wed Mar 21, 2018 01:22 AM

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I understand. Dr. radtke, although I may be speaking out of turn, seems amenable to communicating with oncologists. She also has written two chapters in textbooks, one the chapter on Bladder Cancers including urachal in a 2018 imprint of Rare Cancers published by John Wiley and a chapter specifically on urachal in the 2016 Genitourinary Cancers. She sent those to Mark’s oncologist. Mark has not had the en bloc resection, which worries me a lot in my darker moments. Since it wasn’t done right away, Dr. seifker-Radtke and Mark’s oncologist both felt the chemo was more expedient, and, after he is done with the chemo, he will have the en bloc resection at Barnes Jewiish in St. Louis where there is a urologist/oncologist experienced with the procedure. The urologist in Springfield was absolutely certain the mass was benign and did a partial cystectomy. He wouldn’t even discuss the possibility of a malignancy and his nurse was who told me it was malugnant. Not happy. We were stupid in assuming that he would do the en bloc and in thinking that would just be done as a matter of course. I sure hope it will all work out. Good luck to you. With a little one in school, your decision-making becomes a lot more about others than just yourselves. Stay positive. My husband, Mark’s dad, is a 12-year survivor of Stage 4 cancer (different and totally not related). About 2 weeks before his diagnosis I happened to hear an interview on the radio about cancer and the person said you learn a lot more about living than dying with cancer. I sure found that to be true. Focus on living, focus on joyand love.

RE: Urachal cancer is eligible for phase one clinical trials

by Merel on Wed Mar 28, 2018 06:12 PM

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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

RE: Urachal cancer is eligible for phase one clinical trials

by vtoole on Wed Mar 28, 2018 06:45 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 highly recommend Dr. Arlene Seifert Radtke at MD Anerson. Dr Radkte’s team 713-745-7575. I have not had personal contact/experience with Sloan Kettering but have seen several people highly recommend a Dr. Rosenberg there for this cancer. There are immunotherapy trials/treatments available, but he sure that you are tested for genetic abberations that actually will likely respond well to them. Be sure to check your PDL1 before embarking on certain immunotherpies. Be sure to also check for your TP53 gene to be sure it is not an abberration, as that is the “switch” that is able to turn off the cancer cells developing. If you have that abberration, the immunotherapy might/could exacerbate the cancer cells’ growth. All these genetic abberrations can be determined/uncovered by The Foundation One Gene Testing. Continued good luck.

RE: Urachal cancer is eligible for phase one clinical trials

by Ribz99 on Wed Mar 28, 2018 06:57 PM

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Such excellent advice about immunotherapy. I can only tell you my experience with my SIL's case-she was not tested thoroughly before the doctor's in New Jersey gave her the immunotherapy recommended by Dr. Ratdke from MD Anderson. She had a UTI they never tested her for and passed 3 days later. She was in good enough shape to offer her the immunotherapy, but did not check on existing infection or the items listed in the post above. I wish I could turn the clock back. Good luck with your journey. I know the DIET you are on is the best healer of all. Robin

RE: Urachal cancer is eligible for phase one clinical trials

by Merel on Fri Apr 06, 2018 11:10 AM

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Thank you for your help!! I be sure to make sure I gettested before embarking any treatment with immunotherapy! Ill have a appointment with one of the immunotherapy doctors at my hospital in the next few weeks to discuss my options. Ill let you all know what we decide to do. All the best for all of you, keep faith xx Merel
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