Urachal Cancer Survivor

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RE: 43 yo with metastatic urachal adenocarcinoma

by pallizzie on Sun Aug 07, 2016 02:26 AM

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We all know what you are going through. Thank God that your doctor discovered that it is Urachal cancer and not just bladder cancer. I was diagnosed 6 years ago and I am still here fighting this battle daily. I just found out that after radiation treatment the tumor in my uterus only shrunk 10% which is considered a failure. I have had pain my my left side for well over a year now and the ct scan that was taken recently revealed that there is a tumor wrapped around my bowel. I've had chemo and three oral chemo meds, and radiation and they have all failed. The only thing that worked for me was surgery. I developed a severe infection my last surgery (which removed my ovaries) but I am alive right now and that is all that matters. You need to stay positive, eat healthy and organic and try making a ginger tea (I can send you the recipe) take Turmeric, eat the zest of an organic lemon every day, along with the lemon juice and make the best of the rest of your life! No one knows how long we will live but staying positive and research the hell out of this dreadful disease! When you open your eyes every morning give God thanks that you made it another day. Laugh as often as you can and spend time with loved ones. Listen to music and dance! Have fun! Don't worry about tomorrow - you will get there. Stress is not good for you! Geri

RE: 43 yo with metastatic urachal adenocarcinoma

by dayhawk on Sun Aug 07, 2016 02:47 AM

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On Aug 07, 2016 2:26 AM pallizzie wrote:

We all know what you are going through. Thank God that your doctor discovered that it is Urachal cancer and not just bladder cancer. I was diagnosed 6 years ago and I am still here fighting this battle daily. I just found out that after radiation treatment the tumor in my uterus only shrunk 10% which is considered a failure. I have had pain my my left side for well over a year now and the ct scan that was taken recently revealed that there is a tumor wrapped around my bowel. I've had chemo and three oral chemo meds, and radiation and they have all failed. The only thing that worked for me was surgery. I developed a severe infection my last surgery (which removed my ovaries) but I am alive right now and that is all that matters. You need to stay positive, eat healthy and organic and try making a ginger tea (I can send you the recipe) take Turmeric, eat the zest of an organic lemon every day, along with the lemon juice and make the best of the rest of your life! No one knows how long we will live but staying positive and research the hell out of this dreadful disease! When you open your eyes every morning give God thanks that you made it another day. Laugh as often as you can and spend time with loved ones. Listen to music and dance! Have fun! Don't worry about tomorrow - you will get there. Stress is not good for you! Geri

Thank you for the positive response! Really appreciate it! I would love your tea recipe!

RE: 43 yo with metastatic urachal adenocarcinoma

by pallizzie on Sun Aug 07, 2016 08:01 AM

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The recipe for my ginger tea:

Sauce pan full of filtered water. Add one cinnamon stick. Bring to boil. Shut stove off. Add about three inches of peeled and grated ginger root, turmeric (either powdered, dehydrated or fresh) two cloves of garlic, nutmeg and honey. Let sit on top of stove for 15-20 minutes. Try to use organic ingredients if possible. Drink this whole pot daily. The article I read was titled "Ginger tea that is 10.000 times  more powerful than chemo. I believe I found it on utube. I also found a clinical trial in Dallas at Mary Crowley Cancer Research Center that I intend to tell my doctor about. It was done in 2009 and might be available here. Just type in Urachal cancer in the search engine and look for Donna's story. I also take Turmeric Force and eat the zest of a organic lemon every day and then drink the lemon in my water. I feel that I am taking control of my body doing these things and trying to help myself. Good luck to you! Keep in touch! Geri

RE: 43 yo with metastatic urachal adenocarcinoma

by vtoole on Sun Aug 07, 2016 02:47 PM

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Welcome to this blog/website Dayhawk. As Pallizzie already said, we understand your sentiments- your anxiety, your fears... Also, like Pallizi, my husband has been a 6 year, 8 month survivor, already! I strongly encourage you to look back in this blog to lots of the previous comments- there are pages and pages. There are so many questions you will find in these pages to prepare you ask your doctor, therapies that are discussed - that many have gone through for options you can become aware of - tests to ask your doctor to do to help with appropriate therapies, and hope in that there are many with upward of 9-10 years of survival. This will give you much helpful background, facilities/doctors people have gone to, procedures that have been successful., etc. In the meanwhile, try to eat well- organic whole foods - look up "vociferous vegetables"- cancer fighting foods, add supplements (Tumeric, Curcumin) to your food intake and try Melatonin to help you sleep. My husband has been taking 20 mg per night for years. Many articles tout this as a cancer fighting sleep aid...research that, too, you'll see...hopefully, you have some support - an advocate for you who might be able to help you through this journey. Stay strong. As difficult as this diagnosis may be to face, having a can do, positive attitude has been shown to strengthen the immune system and prolong life. Much hope and positive energy being sent your way. Keep reading on here! ???? Vivian

RE: 43 yo with metastatic urachal adenocarcinoma

by pwinter on Mon Aug 08, 2016 07:53 PM

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On Aug 07, 2016 1:53 AM dayhawk wrote:

I was recently diagnosed with a midline bladder dome mass that looks like urachal adenocarcinoma, biopsy pending. It also looks like I have few small lung nodules and liver mets, with one liver metastasis that's a little larger. All this info was discovered 2 days ago on CT after few months of what seemed like clinical prostatitis, and I'm just feeling depressed and hopeless right now from most things I'm reading online. I can't sleep well and my appetite is really poor. Found this great discussion board to find some hope. Bad news is that I'm young, but I'm trying to think that because I'm young without comorbidities I can fight longer and harder. I have a family with young kids who I want to be with for as long as possible. If there are any encouraging anecdotes from someone who was in similar shoes, please please share.

Hello,

I’m sorry to hear about your diagnosis. I assure you that it was also a shock to everybody on this site when we received our news, but hopefully you will take heart in the efforts and successes that people have experienced in fighting this disease. The learning curve is pretty steep once an accurate diagnosis is finally made and I wouldn’t want to jump to any conclusions about what might work best for you, but I will mention one thing that is important for you to consider as you begin this journey.

 

Because this is such a rare disease, I would highly recommend that you select an oncologist and a surgeon with an established history of treating urachal cancer. Based on the experiences of folks on this site, three of 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; and Dr. Jonathan Rosenberg at Memorial Sloan Kettering in NYC. Any of these docs will set you up with the most appropriate surgeon. Keep in mind that only 1 in 5,000,000 people will receive a diagnosis of urachal cancer so don’t hesitate to thank your local doctor for his/her help and then get a second opinion and your primary care from one of the experts in this field. (I’ve been to two fine oncologists and a long-practicing urologist who had never heard of urachal cancer before I walked through their doors.) You can still keep your local doctor who will ideally work in partnership with your specialist in providing your chemo and bloodwork panels, as well as monitoring and treating any symptoms you may have along the way.

 

I can’t emphasize enough that in addition to an oncologist familiar with this disease, a surgeon at a research/teaching hospital with experience in treating and removing these types of tumors, and who has the full support of a wide spectrum of specialists on staff, could make all the difference in your outcome. Getting the tumor out correctly and completely is critical – you can read old posts on this blog to understand this more fully but if it is within your means to travel, I would highly recommend a top doc at a top hospital. In my case I found recommendations for a surgeon on another blog and was fortunate that he had experience with urachal tumors. His name is Raj Pruthi and he is the Chair of the UNC Department of Urology at Chapel Hill, NC. I would recommend him as well. (Just ensure that when you go to any teaching hospital, the doctor you consult with will be the one to perform the actual procedure.)

 

It was two years ago that I was diagnosed and my life changed forever so I can readily imagine some of the questions and anguish that are now filling your every waking moment. Personally, I found it helpful to read everything I could, first concentrating on urachal cancer (which was rather depressing), and then expanding to an integrative approach to fighting cancer and living with cancer. Even for the experts, urachal cancer is a pretty big unknown so everything that you can do to complement the treatment your doctors recommend – diet changes, lifestyle changes, physical exercise, stress reduction, a good supplement regimen – is vital.

 

Take deep breaths – literally – and have patience with yourself as you begin to understand this new journey you are on. As a husband and a father you have the additional responsibility of carrying on in the face of danger, and you know very well that, while your family and friends will be of great support to you, they will also be watching you and learning from you as you deal with this life threatening experience. Even as you shake with uncertainty inside, you can be a model for strength and perseverance and peace that will enrich and awaken the lives of everyone around you.

 

My best,

Pwinter

 

 

 

 

RE: 43 yo with metastatic urachal adenocarcinoma

by christobell1 on Mon Aug 22, 2016 09:21 AM

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Dear Mr Winter

Thank you for your inspiting entry.

My boyfriend has Urachal Cancel and had surgery to remove a tumour last April. They have now discovered 3 lung nodules and he starts chemo on Thursday.

We live in the UK, however this site seems to have a wealth of information.

My question is has chemo been a success for any readers and what side effects have they experienced?

Also we have drastically changed his diet (started a couple of weeks ago), any further tips would be greatly appreciated. He is 49.

C

RE: 43 yo with metastatic urachal adenocarcinoma

by julesgreenb on Mon Aug 22, 2016 01:13 PM

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On Aug 22, 2016 9:21 AM christobell1 wrote:

Dear Mr Winter

Thank you for your inspiting entry.

My boyfriend has Urachal Cancel and had surgery to remove a tumour last April. They have now discovered 3 lung nodules and he starts chemo on Thursday.

We live in the UK, however this site seems to have a wealth of information.

My question is has chemo been a success for any readers and what side effects have they experienced?

Also we have drastically changed his diet (started a couple of weeks ago), any further tips would be greatly appreciated. He is 49.

C

Do you know which chemo your boyfriend will be getting? They are all different. Most of us have gone through chemo, many of us more than one. As the docs will tell you everyone is different so no two people will have exactly the same reaction. Plus the dose is a factor. I usually end up having a lot of side effects after the first round then my oncologist lowers the dose a bit which helps a lot. Other people find the effects of chemo are accumulative and get worse after more rounds.

RE: 43 yo with metastatic urachal adenocarcinoma

by vtoole on Mon Aug 22, 2016 02:02 PM

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On Aug 22, 2016 9:21 AM christobell1 wrote:

Dear Mr Winter

Thank you for your inspiting entry.

My boyfriend has Urachal Cancel and had surgery to remove a tumour last April. They have now discovered 3 lung nodules and he starts chemo on Thursday.

We live in the UK, however this site seems to have a wealth of information.

My question is has chemo been a success for any readers and what side effects have they experienced?

Also we have drastically changed his diet (started a couple of weeks ago), any further tips would be greatly appreciated. He is 49.

C

Christobel, my husband has has UA for almost 7 years now. After the partial removal of his bladder, he did not have chemo for about 7 months. However, there had been no CT's showing metastasis- as you have seen. But, he did undergo chemo about 7 months later - the one most typically used at MDAnderson in Houston. It was called 5 FU. It included Cisplatin, Gemcidabine, etc. It was very lengthy each month - every 3 weeks - he was in the hospital for almost 1 week at a time. (Dr. Arlene Seifert Rathke " invented this regimen specifically for UA patients, but its efficacy is not by any means fool proof.) My husband tolerated it fairly well, but, they did a lot to manage any potential side effects with anti nausea meds, etc. He lost some weight over the 6 months he was on it. His doc at MDA wanted to continue the treatments for another 6 months, but my husband did not want to. It weakend him greatly and he wanted to contnue to work, so he took every 3 week infusions of Vectibix (Panumitab) another "chemo" - if you will - with virtually no side effects. As Winter says, there are a number of chemo treatments that different hospitals/docs recommend fo this cancer as none of them seem to be the one size fits all. There is someone on this discussion group who has been on FOLFIRI and FOLFOX at separate times; all of these varying treatments seem to work for a while and then they seem to no longer work, so folks with UA may undergo several different chemo treatments over time. Another doc at MDA in Houston recently mentioned Mitomycin - an older drug - that seems to have had some good results here again, though it is by no means new. I wish you both all the best of luck in this journey. As you can see, by going back page by page in this blog , a wealth of information on strategies and treatments so many patients have undergone with this rare form of cancer. My best to you. Your boyfriend is fortunate to have you as his caretaker. Be strong. Vivian T.

RE: 43 yo with metastatic urachal adenocarcinoma

by christobell1 on Mon Aug 22, 2016 03:30 PM

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Dear Vivian

Thank you for taking the time to respond and for your kind words.

I will read old posts as you suggest. I wish you and your husband all the best.

C

RE: 43 yo with metastatic urachal adenocarcinoma

by christobell1 on Mon Aug 22, 2016 04:10 PM

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Hi

Thank you for your response. I am not sure but will check.

Kind regards

C

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