Urachal Cancer Survivor

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RE: Urachal cancer is eligible for phase one clinical trials

by Michaelscrosby on Wed Feb 27, 2019 02:42 AM

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Hi Daniel, I flew down and back for my first treatment. (MDA has a travel agent in house that uses United, you aren't charged change fee's, etc, but it wasnt' any cheaper). But after my first flight I didn't feel well flying back after the Chemo. So from 2nd treatment forward I drove down by myself and had friends fly one way down on the last day of the cycle and drive back with me. It's about 2 days drive each way and it the casinos in Biloxi are exactly half way :-) . So 2 hotel nights each cycle was probably about the same or cheaper than a round trip flight, plus I had flexibility without having to rearrange flights each cycle with the inevitable delays. (and there will be delays) Out of the 6 cycles I only needed assistance getting home on the last 2. Cycles 2 and 3 I drove home while my friends tagged along and on cycle 4 I went by myself both to and from. 5 and 6 I drove down no problem but needed someone to drive back for me. Speak up if you are feeling ill and they will play around with your meds and steroid dosage to make you feel better. It's hard to explain the feeling I had after the chemo, it's feeling like I have the flu without the cold symptoms and the heavy doses of steriods I received made me feel like I was guzzling coffee 24/7. I know everyone is different, but I was expecting to lose weight during chemo, instead I put on almost 30 pounds (I was 160 to start with). Dr Pisters, who was my eventual surgeon, gave me some good advice on my first day at MDA, he said jump through every hoop Dr. Siefker tells you to jump through (she's the best with Urachal), and he told me not to worry about anything else except doing what she suggests. Otherwise turn my worrying off and focus on family and getting better. I had a 1 year old son at the time so I was highly focused on getting better. The whole chemo process became a job for me. Very mechanical, step by step, point A to point B. I think it really helped me get through it. Even today almost 2 years after my last round of chemo, flying down for my scans is a business like process for me. I'm happy to help however I can. Please let me know if you need anything or have any questions. A few notes: There is a Chick-fil-a in the cafeteria on ground floor in the main hospial building :-) Another good restraurant in Rotary House (steak, fish, etc). Free haircuts at the salon in main hospital building along with a laundry mat. They let me wander the hospital during treatment, so drag your IV machine up to the observation desk in main hospital if they let you. take your machine to the cafeteria to get out and get some food. There is another good place to sit and relax called "the park", it's actually inside. Room service food in the main hospital is actually pretty good. I'll try to think of more tips, but don't hesitate to ask anything you need. Best of luck. You can do this!

RE: Urachal cancer is eligible for phase one clinical trials

by dstef69 on Wed Feb 27, 2019 04:37 PM

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Thank you very much for the info,I really appreciate it! The insurance is still reviewing my case,hopefully I’ll have a answer tomorrow before the appointment with Dr.Siefke r. I’m focused on my treatment right now but I want to get it done and get back to my life. I’ll take your advice and make sure that I will do everything what Dr.Siefke r says!Like you mentioned traveling might be a problem but I’ll figure it out! Thank you again and if I’ll have any questions I’ll let you know!

RE: Urachal cancer is eligible for phase one clinical trials

by Michaelscrosby on Thu Mar 07, 2019 05:54 AM

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On Feb 27, 2019 4:37 PM dstef69 wrote:

Thank you very much for the info,I really appreciate it! The insurance is still reviewing my case,hopefully I’ll have a answer tomorrow before the appointment with Dr.Siefke " target="_blank" rel="nofollow">Dr.Siefke "" target="_blank" rel="nofollow">http://Dr.Siefke " target="_blank" rel="nofollow">Dr.Siefke " " target="_blank" rel="nofollow">Dr.Siefke " target="_blank" rel="nofollow">Dr.Siefke "" target="_blank" rel="nofollow">http://Dr.Siefke " target="_blank" rel="nofollow">Dr.Siefke " target="_blank" rel="nofollow">Dr.Siefke " target="_blank" rel="nofollow">Dr.Siefke r. I’m focused on my treatment right now but I want to get it done and get back to my life. I’ll take your advice and make sure that I will do everything what Dr.Siefke " target="_blank" rel="nofollow">Dr.Siefke "" target="_blank" rel="nofollow">http://Dr.Siefke " target="_blank" rel="nofollow">Dr.Siefke " " target="_blank" rel="nofollow">Dr.Siefke " target="_blank" rel="nofollow">Dr.Siefke "" target="_blank" rel="nofollow">http://Dr.Siefke " target="_blank" rel="nofollow">Dr.Siefke " target="_blank" rel="nofollow">Dr.Siefke " target="_blank" rel="nofollow">Dr.Siefke r says!Like you mentioned traveling might be a problem but I’ll figure it out! Thank you again and if I’ll have any questions I’ll let you know!
Hi Daniel, checking in on you. How are you doing?

RE: Urachal Cancer Survivor

by VinceC on Sat Mar 16, 2019 12:09 PM

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Good morning, My wife was diagnosed with Urachal cancer. She had surgery to remover the dome of the bladder, urachas, and umbillical. surgery took 5 hours. pathology came back that there is still disesa in the deep tissue margins. 5 of the 9 lymphnoids where hot. At 1st they said 4 rounds of chemo followed by complete bladder removal. then they change course after reviewing the case and said chemo and surgery is not and option. they are taking a wait and see approach. Of course we don't agree with this approach. We have reached out to MD Anderson in TX, and Memorial Sloan Kettering in NY closer to home. If anyone has experiance with this cancer, suggestion on where to go and treatment plans  would be greatly appreciated

RE: Urachal Cancer Survivor

by vtoole on Sat Mar 16, 2019 02:48 PM

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On Mar 16, 2019 12:09 PM VinceC wrote:

Good morning, My wife was diagnosed with Urachal cancer. She had surgery to remover the dome of the bladder, urachas, and umbillical. surgery took 5 hours. pathology came back that there is still disesa in the deep tissue margins. 5 of the 9 lymphnoids where hot. At 1st they said 4 rounds of chemo followed by complete bladder removal. then they change course after reviewing the case and said chemo and surgery is not and option. they are taking a wait and see approach. Of course we don't agree with this approach. We have reached out to MD Anderson in TX, and Memorial Sloan Kettering in NY closer to home. If anyone has experiance with this cancer, suggestion on where to go and treatment plans  would be greatly appreciated

Hello VinceC...So sorry for you and your wife’s journey...your instinct to get in touch with either/both MDAnderson and Sloan Kettering are exactly the right idea! Having had personal experience with Arlene Seifker Radtke at MDAnderson gives me great confidence in her abilities. She is one of the doctors in the Urology Dept there who has done and continues to do research on this rare cancer. She developed the original treatment there for Urachal Adenocarcinoma and continues to have it as one of her passions, treating many patients successfully. You should not wait a moment more to contact her! A removal of the tumor, bladder and an en bloc resection must be done and chemo treatment specific to her recommendation. A “wait and see” approach is unacceptable!!! That is what my husband’s local doctor had recommended...I went to MDAnderson and carved a new and fruitful path! After you have made your appointment (or before), go back on this forum and read through all the past posts. You will read of the many people who share their treatments plans, the chemos used, surgeries, etc. this forum has been going in for some time (at least 7 years I am aware of) and I got lots of ideas and kept a notebook of surgeries, chemo treatments, etc. and brought my notes with me to MDAnderson each time! I wish you and your wife a more fruitful journey and look forward to hearing when you plan to go to MDA and what Dr. A SR recommends and dies for your wife. Much positive energy...Vivian

RE: Urachal Cancer Survivor

by mmb617 on Sat Mar 16, 2019 05:16 PM

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On Mar 16, 2019 12:09 PM VinceC wrote:

Good morning, My wife was diagnosed with Urachal cancer. She had surgery to remover the dome of the bladder, urachas, and umbillical. surgery took 5 hours. pathology came back that there is still disesa in the deep tissue margins. 5 of the 9 lymphnoids where hot. At 1st they said 4 rounds of chemo followed by complete bladder removal. then they change course after reviewing the case and said chemo and surgery is not and option. they are taking a wait and see approach. Of course we don't agree with this approach. We have reached out to MD Anderson in TX, and Memorial Sloan Kettering in NY closer to home. If anyone has experiance with this cancer, suggestion on where to go and treatment plans  would be greatly appreciated

It's been over a year since I posted on this forum about my wife's experience battling urachal cancer so I thought an update might be in order. Rather than repeating what I've already posted I'll refer you to my post of 12-12-17 a couple pages back which details everything up to that point and simply report what's happened since then.

It's now been 3 1/2 years since her initial diagnosis and she's doing reasonably well considering that she was told at first that she probably only had a few months left.

At the time of my previously mentioned post she was still on the immunotherapy drug Tecentriq, but a CT scan in Feb 2018 showed some progression of the urachal cancer so she was taken off the Tecentriq and put back on chemo, going to a Folfox regemin. She is still getting the immunotherapy drug Herceptin for her stomach cancer since it's still working to control that primary.

To date she has received 19 rounds of Folfox. The doctors say she will stay on it till it stops working, and then switch to something else. In her case they say the cancer is not curable so she will never be done with treatment. This may be partly because she's battling two different primary cancers, both urachal adenocarcinoma and linitis plastica (stomach cancer).

Our financial position did not allow us to consider any of the well known major cancer centers that are distant to us, but I feel fortunate to have gotten into the Hillman Cancer Center in Pittsburgh PA which is about 95 miles from us. She has to go for treatment every 2 weeks which would be impossible if it was farther than we can easily drive.

After her first surgery in July 2015 her local oncologist also suggested a wait and see approach before doing anything more. We weren't comfortable with that which is why we contacted Hillman, and she's been a patient there ever since. I really like the team approach they take to find the best options.

The past 3 1/2 years have been a real roller coaster with times when she's been pretty sick, and she's been hospitalized more than a few times, but also with times that she's felt real good.

Right now she's doing well other than needing to be on oxygen, but they are working on that. She was referred to a pulmonologist who said she's having a lot of inflammation in her lungs caused by her chemo drugs but he's started her on Prednisone for that and it seems to be working.

No matter what they tell my wife she doesn't give up and I think that's very important.

Wishing your wife all the best.

RE: Urachal Cancer Survivor

by pwinter on Sat Mar 16, 2019 05:16 PM

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On Mar 16, 2019 12:09 PM VinceC wrote:

Good morning, My wife was diagnosed with Urachal cancer. She had surgery to remover the dome of the bladder, urachas, and umbillical. surgery took 5 hours. pathology came back that there is still disesa in the deep tissue margins. 5 of the 9 lymphnoids where hot. At 1st they said 4 rounds of chemo followed by complete bladder removal. then they change course after reviewing the case and said chemo and surgery is not and option. they are taking a wait and see approach. Of course we don't agree with this approach. We have reached out to MD Anderson in TX, and Memorial Sloan Kettering in NY closer to home. If anyone has experiance with this cancer, suggestion on where to go and treatment plans  would be greatly appreciated

Hello Vince,

My heart goes out to you and your wife. I’ll mention a few things here and if you’re interested in any of this I would be happy to follow up with you. Firstly, heading to MD Anderson or Sloan Kettering seems very wise at this point and I would do the same. But I would also work toward making appointments with at least one integrative oncologist, who I assure you will provide a more comprehensive plan of treatment than the protocol recommended by traditional docs. In the five years since I was diagnosed with urachal cancer I have not had one oncologist, physician or surgeon EVER mention any dietary or lifestyle changes that they would recommend I make. This is despite the fact that the scientific literature is dense with evidence based research that speaks unequivocally to the importance of diet and lifestyle (stress reduction, healthy sleep cycles, exercise) in not only preventing cancer but in achieving remission as well. This is not new age, hippy, save-the-planet stuff. It should be taken seriously.

I have been to the Block Center for Integrative Cancer Treatment in greater Chicago (Skokie, IL) and I would highly recommend them. They are an integrative care facility, which means they have MDs on staff as well as nutritionists, counselors etc. They also provide chemo to patients (and can likely provide whatever regimen may be recommended by Dr. Seifker Radtke, for example) but in a much more individualized way than one might receive in a conventional medical facility. I have also heard good things about Paul Anderson at the Anderson Medical Specialty Associates (AMSA) in Kansas and the Stengler Center for Integrative Medicine in California.

As you seek the best treatment for your wife, I would not rule out potentially complementary recommendations from a variety of modalities as you will find that urachal cancer, and most cancers, tend to defy purely medical interventions, certainly in the long run. Lastly, if and when you decide to have chemotherapy, I would recommend reading a bit of Dr. Valter Longo’s material on the fasting mimicking diet as this has been clinically shown to improve chemotherapy outcomes while diminishing side effects. Longo is a gerontology and biological researcher at the University of Southern California and the Director of the USC Longevity Institute.

Quite possibly you will do some of your own research into ways of achieving remission. As you work to get a handle on how best to address your wife’s condition, and again, as you wait to see the docs on your list, I would respectfully suggest that you pull out all the stops to help your wife regain some of her physical and emotional health by taking a proactive approach to all things within your realm – most importantly diet. If you do this it is possible that your wife may not only begin to feel differently, but that when you follow up with new labs in a month or so you may already see improvements.

While you await appointments at the various facilities I would advise your wife to make an immediate and drastic change to her diet by following a whole food, plant based diet and eliminating all food products with added sugar (soda, desserts, processed foods), refined carbs such as bread and pasta, and all animal products, as well as drinking and cooking with only clean water (never tap water). I know that this may sound extreme and, based on your familiarity with this, quite possibly nonsensical, but I can assure you that after five years of my own daily research, if there is anything that can turn a cancer diagnosis around it is fanatical devotion to the absolute healthiest diet on the planet. From my perspective, changing one’s diet, while challenging, is nowhere near as disruptive or traumatic as chemo – so if your wife has the fortitude to accept a chemotherapy regimen, changing her diet is a walk in the park.

A final word – I would recommend listening to inspiring talks by people who have beaten cancer or overcome insurmountable odds in their life. I began doing this after I returned home from my initial surgery with a catheter the size of a garden hose in me and significant pain and weakness, not to mention the horror and disbelief at this person who had shifted from being strong and invincible to enfeebled and nearly bedridden. The stories of people who had overcome huge challenges reached deep inside me, way past my own fears and insecurities, and gave me hope and inspiration, which is utterly vital to the healing process. I would recommend www.chrisbeatcancer.com as a good place to start. Whether you go the traditional route or are open to alternative therapies, the message that these folks convey can renew your faith.

Again, let me know if you want additional information on any of this. Best of luck to you and your wife.

Paul

RE: Urachal Cancer Survivor

by superbowl52 on Tue Mar 19, 2019 10:55 AM

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Hello,

Has anyone here been on the NIH study (or other similar study) for combination immunotherapy and targeted therapy (nivolumab and cantozantinib?) 

Also, has anyone tried Car-T cell therapy? tIt is very experimental - they are trying it on a lot of different cancers although with varying success.

My dad has had a partial cysectomy, HIPEC, and two chemo regimes and we are now trying this. 

Thanks for any feedback.

Best to all

Par

RE: Urachal Cancer Survivor

by SMMile on Tue Mar 19, 2019 12:22 PM

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In response, I am in 2nd stage of a clinical trial, initial Yervoy/Opdivo 4 cycles (21 days); now entering Opdivo IV only portion. Stable disease (which is same as with prior chemo as far as I can tell but as time is not  my friend vis-a-vis cancer metastasis, then I'm grateful for "stable".) So, I am a candidtate for what's next. These drugs work but they don't work for everyone.

RE: Urachal Cancer Survivor

by Ribz99 on Wed Mar 20, 2019 01:42 PM

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Hi Paul - Your message is written so beautifully and intelligently - I only wish your protocol would be offered as the priority treatment for anyone with cancer. In fact - I’m my opinion - consider putting your words into a book. Author your message so others can be helped. Reach out to Dr. Caldwell Esselstyn, famed from the movie FORKS NO KNIVES, to help get your survival message out. It’s crazy how cancer has become so mainstream with the overflow of patients at Sloan Kettering and all the big pharma paid advertising on all major network television programs - like we are just supposed to accept as the norm now in 2019. It’s disgusting and sad. Your message is so powerful and so well written - my sincere plea to you, Paul, is to consider sharing your thoughts publicly to nudge those that do not take the diet piece of the puzzle seriously enough - and sadly they do when it’s too late - like with my SIL. Warm regards to you “Cancer Warrior”, Robin
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