Urachal Cancer Survivor

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RE: Urachal Adenocarcinoma

by ReggieTiongson on Fri Sep 23, 2016 08:33 AM

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Hello... my husband , 44 y/o was diagnosed with stage 4 urachal cancer in July 2016.. He already went through removal of tumor in the bladder but cancer spread in the nearby lymphnodes up to the neck... i just want to check if there are any new approach in the treatment of this since all doctors we consulted are saying its very rare...

RE: Urachal Adenocarcinoma

by vtoole on Fri Sep 23, 2016 12:35 PM

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On Sep 23, 2016 8:33 AM ReggieTiongson wrote:

Hello... my husband , 44 y/o was diagnosed with stage 4 urachal cancer in July 2016.. He already went through removal of tumor in the bladder but cancer spread in the nearby lymphnodes up to the neck... i just want to check if there are any new approach in the treatment of this since all doctors we consulted are saying its very rare...
Hello, So sorry for this diagnosis. We are all on this journey together. Please look back on this blog for invaluable comments about diagnosis, treatments of all kinds and varying degrees. It is a wealth of information truly and can help you gather ideas and questions to present to your husband's Doctor. Each person here has had some similar, and others different treatments. I gathered all this info in a notebook and advocated for my husband for the past 7 years. Each time someone would mention a treatment or testing, I would ask his doctor. Btw, most Urachal Diagnoses are stage 4, as the cancer is forming for many, many years undetected. That's the unfortunate nature of this cancer. We spent 5 years traveling to and from MDAnderson in Houston for treatments and experimental trials. We feel based on our living in Dallas - and its proximity and reputation -it provided cutting edge therapy/treatments. Good luck and hugs to you! Vivian T.

RE: Urachal Adenocarcinoma

by christobell1 on Fri Sep 23, 2016 04:36 PM

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Hi I am in the same boat as you. My boyfriend started chemo in August. Vivian suggested I read old posts so I have made notes. I would love to know how you get on. There is so little out there ! We live in London, U.K. Christina

RE: Urachal Mucinous Adenocarcinoma

by ReggieTiongson on Mon Oct 03, 2016 04:14 AM

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On Sep 05, 2016 12:41 PM vtoole wrote:

On Sep 05, 2016 7:28 AM HashimiSayed wrote:

I had stage 3 melanoma which spread to my lymph nodes. I did 3 months

of cannabis oil, 3X a day, and now am cancer free a year later. I had

a perfect CT scan (Sept 2015), a perfect brain scan (Feb 2016), and

recently a perfect PET scan. No cancer anywhere!

I didn't do any other form of treatment. No surgeries, no chemo,

nothing. I only used cannabis oil. I got my oil from this lady

za1121@outlook.com

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Is there a difference between Urachal Adenocarcinoma and Urachal Mucinous Carcinoma?
Hello , thank you all for your reply and really thankful i found this all your inputs are really helpful as we are in this stage that we are having a lot of questions... My husband is already on his 2nd cycle of his chemo and based from the recent blood test his CEA has dramatically increased by 30%... doctor said it can be the cancer is growing or the cancer cell is breaking bec it is being attacked aggressively... my husband is into treatment involving this meds Oxaliplatin + 5 flouruoracil, is there anybody here into the same meds? His doctors have already increased the dose but so far no side effects... we will find out if his body is really responding well once he gets the scan but right we are not yet sure if cancer is growing or just breaking but we would like to believe that the lump from his neck is nonlonger getting bigger... doctor is recommending him to eat more meat but i am trying to increase his vegetabel and fruits intake through juicing hemoglobin seems to be improving and he is gaining weight now... i am open to suggestions on what diet should be given to him while on treatment.. thanks and continuously praying for people battling cancer... Reggie

RE: Urachal Mucinous Adenocarcinoma

by julesgreenb on Mon Oct 03, 2016 08:49 AM

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Hi Reggie, His treatment sounds right. Many of us started with that one (FOLFOX or 5 FU)and found it effective. I'm doing a totally different chemo now but that's because over two and a half years in treatment those aren't working for me any more. Glad he is tolerating it well. That part varies. Regarding diet, I was vegetarian for 25 years prior to my cancer diagnosis and it was my oncology naturopath who told me to increase my protein intake so I started to eat meat. Now I find I'm very sensitive to cravings so I tend to follow whatever my body seems to be telling me it wants, which is often a protein. The main thing for diet or to reduce sugar including carbs. I also found as my digestive system got more sensitive eating vegetarian proteins like beans became more uncomfortable for me. Keep in touch! Hugs and prayers, Julia

RE: Urachal Mucinous Adenocarcinoma

by christobell1 on Mon Oct 03, 2016 01:21 PM

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Hi Reggie

My partner is also on his 2nd cylce - 3rd coming up this week. He is on the same drugs as your husband. Fingers crossed ro both of them.

I have changed his diet to organic fruit, veg, meat and fish. No sugar at all.

Prays to you both.

Keep in touch - it seems that we are on a similar timeline with this journey.

Christina

RE: Urachal Cancer Survivor

by bnelson on Mon Oct 10, 2016 06:17 AM

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On Aug 23, 2016 1:17 PM vtoole wrote:

On Aug 23, 2016 7:08 AM christobell1 wrote:

Thank you for asking. Terrified! Trying to be positive.
Oh, one more thing. Don't be afraid to ask LOTS of questions and/or seek second opinions. Looking back over this blog, I compiled a long list of treatments others had had and presented them to my husband's doctors every step of the way. Also, inquire about genetic testing (known as Fiundatiin One testing here in the states). My husband has been on 3 different trials that have extended his life. They are continually blazing new trails in cancer every day now! Immunotherapy is one. But genetic testing pinpoints your specific gene abberations and those work for a number of months to slow the progress and/or partial remission. Let us know how you're doing as you go along!!! Hugs.
Can you tell me what 3 different clinical trials your husband has been in. My dad has been battling this horrible disease for 6.5 years. This past year has been a tough one. He did join a clinical trial in Bethesda, MD at the NIH hospital from March 2016 to august 2016. Treatment didn't work on him so they stopped his treatment. I'm desperately looking for another trial or treatment protocol for him. He is slowly getting weaker by the day. Thank you for your time. Bonnie

RE: Urachal Cancer Survivor

by julesgreenb on Mon Oct 10, 2016 08:57 AM

Quote | Reply

On Oct 10, 2016 6:17 AM bnelson wrote:

On Aug 23, 2016 1:17 PM vtoole wrote:

On Aug 23, 2016 7:08 AM christobell1 wrote:

Thank you for asking. Terrified! Trying to be positive.
Oh, one more thing. Don't be afraid to ask LOTS of questions and/or seek second opinions. Looking back over this blog, I compiled a long list of treatments others had had and presented them to my husband's doctors every step of the way. Also, inquire about genetic testing (known as Fiundatiin One testing here in the states). My husband has been on 3 different trials that have extended his life. They are continually blazing new trails in cancer every day now! Immunotherapy is one. But genetic testing pinpoints your specific gene abberations and those work for a number of months to slow the progress and/or partial remission. Let us know how you're doing as you go along!!! Hugs.
Can you tell me what 3 different clinical trials your husband has been in. My dad has been battling this horrible disease for 6.5 years. This past year has been a tough one. He did join a clinical trial in Bethesda, MD at the NIH hospital from March 2016 to august 2016. Treatment didn't work on him so they stopped his treatment. I'm desperately looking for another trial or treatment protocol for him. He is slowly getting weaker by the day. Thank you for your time. Bonnie
Hi Bonnie, Would you mind sharing what treatments your father has done over the years, especially those that you believe worked the best for him? I'm at 2 1/2 years and 6 1/2 sounds great to me right now. Thanks! Julia

RE: Urachal Cancer Survivor

by vtoole on Mon Oct 10, 2016 12:00 PM

Quote | Reply

On Oct 10, 2016 6:17 AM bnelson wrote:

On Aug 23, 2016 1:17 PM vtoole wrote:

On Aug 23, 2016 7:08 AM christobell1 wrote:

Thank you for asking. Terrified! Trying to be positive.
Oh, one more thing. Don't be afraid to ask LOTS of questions and/or seek second opinions. Looking back over this blog, I compiled a long list of treatments others had had and presented them to my husband's doctors every step of the way. Also, inquire about genetic testing (known as Fiundatiin One testing here in the states). My husband has been on 3 different trials that have extended his life. They are continually blazing new trails in cancer every day now! Immunotherapy is one. But genetic testing pinpoints your specific gene abberations and those work for a number of months to slow the progress and/or partial remission. Let us know how you're doing as you go along!!! Hugs.
Can you tell me what 3 different clinical trials your husband has been in. My dad has been battling this horrible disease for 6.5 years. This past year has been a tough one. He did join a clinical trial in Bethesda, MD at the NIH hospital from March 2016 to august 2016. Treatment didn't work on him so they stopped his treatment. I'm desperately looking for another trial or treatment protocol for him. He is slowly getting weaker by the day. Thank you for your time. Bonnie
Hello...sounds like your dad has had a similar timeline as my husband. My husband has been on specific trials based on his genetic aberrations. These genetic abberations have to be determined by your doctor sending your tissue from one/several of tumors to Foundation One Genetic Testing. He has about 4 major genetic aberrations (there are more) that 3 of which were treated. These experimental treatments were 5 FU chemo regimen, Vectibix (Panitumumab), BVD523, BMN673 (PARP inhibitor), and Durvolumab with Mocetinostat (immunotherapy trial). These treatments were all determined by and administered at MDAnderson in Houston except the last one. We opted to do the last one here closer to home. The first line of defense of chemo worked as did the Vectibjx. The BVD523 did not work, the BMN673 did work for about 5 months (this is typical time frame for these trial drugs), and the last treatment - the immunotherapy did not work and actually hastened/increased the disease. Hopefully, this is helpful. We are about to embark on a systemic chemo called Alimta as my husband's cancer has gotten worse on this last trial treatment. This last drug is one used for certain cancers including lung. It was created with the mesothelioma patients. Hugs and best wishes.

RE: Urachal Cancer Survivor

by bnelson on Tue Oct 11, 2016 04:47 PM

Quote | Reply

On Oct 10, 2016 12:00 PM vtoole wrote:

On Oct 10, 2016 6:17 AM bnelson wrote:

On Aug 23, 2016 1:17 PM vtoole wrote:

On Aug 23, 2016 7:08 AM christobell1 wrote:

Thank you for asking. Terrified! Trying to be positive.
Oh, one more thing. Don't be afraid to ask LOTS of questions and/or seek second opinions. Looking back over this blog, I compiled a long list of treatments others had had and presented them to my husband's doctors every step of the way. Also, inquire about genetic testing (known as Fiundatiin One testing here in the states). My husband has been on 3 different trials that have extended his life. They are continually blazing new trails in cancer every day now! Immunotherapy is one. But genetic testing pinpoints your specific gene abberations and those work for a number of months to slow the progress and/or partial remission. Let us know how you're doing as you go along!!! Hugs.
Can you tell me what 3 different clinical trials your husband has been in. My dad has been battling this horrible disease for 6.5 years. This past year has been a tough one. He did join a clinical trial in Bethesda, MD at the NIH hospital from March 2016 to august 2016. Treatment didn't work on him so they stopped his treatment. I'm desperately looking for another trial or treatment protocol for him. He is slowly getting weaker by the day. Thank you for your time. Bonnie
Hello...sounds like your dad has had a similar timeline as my husband. My husband has been on specific trials based on his genetic aberrations. These genetic abberations have to be determined by your doctor sending your tissue from one/several of tumors to Foundation One Genetic Testing. He has about 4 major genetic aberrations (there are more) that 3 of which were treated. These experimental treatments were 5 FU chemo regimen, Vectibix (Panitumumab), BVD523, BMN673 (PARP inhibitor), and Durvolumab with Mocetinostat (immunotherapy trial). These treatments were all determined by and administered at MDAnderson in Houston except the last one. We opted to do the last one here closer to home. The first line of defense of chemo worked as did the Vectibjx. The BVD523 did not work, the BMN673 did work for about 5 months (this is typical time frame for these trial drugs), and the last treatment - the immunotherapy did not work and actually hastened/increased the disease. Hopefully, this is helpful. We are about to embark on a systemic chemo called Alimta as my husband's cancer has gotten worse on this last trial treatment. This last drug is one used for certain cancers including lung. It was created with the mesothelioma patients. Hugs and best wishes.
Thx for your reply. He has had some genetic testing. I'm with you I think he got worse on the immunotherapy. He was on Cabo/nivo. Which of the treatments do you feel worked the best? Did they use in combination with 5FU or xeloda? My thoughts and prayers are with you and your husband. Bonnie
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