Urachal Cancer Survivor

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RE: Urachal Cancer Survivor

by vtoole on Tue Oct 11, 2016 06:27 PM

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On Oct 11, 2016 4:47 PM bnelson wrote:

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
No, he was on Durvalumab with Micitinostat. We are about to do Amlita (chemo for mesothelioma) to see if it can extend his life. I think the 5 FU with Cisplatin and gemcidabine was best. Our doc at MDA added Vectibjx and that did the trick at the very beginning. In remission for 3-4 years. Thanks for your thiughts. Same to you!

RE: Urachal Cancer Survivor

by julesgreenb on Tue Oct 11, 2016 07:20 PM

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What was your experience with Cabo/nivo? That's not what you meant by immunotherapy right? Did it work for a while? What about side effects? Julia

RE: Urachal Cancer Survivor

by vtoole on Tue Oct 11, 2016 07:27 PM

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On Oct 11, 2016 7:20 PM julesgreenb wrote:

What was your experience with Cabo/nivo? That's not what you meant by immunotherapy right? Did it work for a while? What about side effects? Julia
Hi Julia, my husband has not been on Carboplatin or Nivulomab. Cisplatin is stronger than carbopkatin and has more side effects. Nivolumab sounds like an immunotherapy drug (all the "mabs" seem to be in your drugs) but he was not on that. The Durvulumab he was on had no apparent side effects, but we believe strongly that it hastened the progression quite seriously is a short period of time. Not a proponent of the immunotherapy for UA patients in my opinion.

RE: Urachal Cancer Survivor

by julesgreenb on Tue Oct 11, 2016 08:01 PM

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On Oct 11, 2016 7:27 PM vtoole wrote:

On Oct 11, 2016 7:20 PM julesgreenb wrote:

What was your experience with Cabo/nivo? That's not what you meant by immunotherapy right? Did it work for a while? What about side effects? Julia
Hi Julia, my husband has not been on Carboplatin or Nivulomab. Cisplatin is stronger than carbopkatin and has more side effects. Nivolumab sounds like an immunotherapy drug (all the "mabs" seem to be in your drugs) but he was not on that. The Durvulumab he was on had no apparent side effects, but we believe strongly that it hastened the progression quite seriously is a short period of time. Not a proponent of the immunotherapy for UA patients in my opinion.
Sorry I was asking Bonnie.

RE: Urachal Cancer Survivor

by bnelson on Sat Oct 15, 2016 07:21 AM

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On Oct 11, 2016 8:01 PM julesgreenb wrote:

On Oct 11, 2016 7:27 PM vtoole wrote:

On Oct 11, 2016 7:20 PM julesgreenb wrote:

What was your experience with Cabo/nivo? That's not what you meant by immunotherapy right? Did it work for a while? What about side effects? Julia
Hi Julia, my husband has not been on Carboplatin or Nivulomab. Cisplatin is stronger than carbopkatin and has more side effects. Nivolumab sounds like an immunotherapy drug (all the "mabs" seem to be in your drugs) but he was not on that. The Durvulumab he was on had no apparent side effects, but we believe strongly that it hastened the progression quite seriously is a short period of time. Not a proponent of the immunotherapy for UA patients in my opinion.
Sorry I was asking Bonnie.
Don't be sorry for asking. Cabo/nivo I think worked some a little for my dad, but not enough. Cabozantinib was started at 60mg. He had a lot of fatigue. Nivolumab (opdivo) gave him low magnesium and phosphorus. Otherwise he continued to work, running his own plumbing/electrical business and traveled acrossed the US every 2weeks to Bethesda, MD from Montana. There are 2 other urachal patients in the study. That's all I know. NCI study # NCT02496207 is online with some results. I'm going to send you a pm, too. Bonnie

RE: Urachal Cancer Survivor

by vtoole on Sat Oct 15, 2016 12:27 PM

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On Oct 15, 2016 7:21 AM bnelson wrote:

On Oct 11, 2016 8:01 PM julesgreenb wrote:

On Oct 11, 2016 7:27 PM vtoole wrote:

On Oct 11, 2016 7:20 PM julesgreenb wrote:

What was your experience with Cabo/nivo? That's not what you meant by immunotherapy right? Did it work for a while? What about side effects? Julia
Hi Julia, my husband has not been on Carboplatin or Nivulomab. Cisplatin is stronger than carbopkatin and has more side effects. Nivolumab sounds like an immunotherapy drug (all the "mabs" seem to be in your drugs) but he was not on that. The Durvulumab he was on had no apparent side effects, but we believe strongly that it hastened the progression quite seriously is a short period of time. Not a proponent of the immunotherapy for UA patients in my opinion.
Sorry I was asking Bonnie.
Don't be sorry for asking. Cabo/nivo I think worked some a little for my dad, but not enough. Cabozantinib was started at 60mg. He had a lot of fatigue. Nivolumab (opdivo) gave him low magnesium and phosphorus. Otherwise he continued to work, running his own plumbing/electrical business and traveled acrossed the US every 2weeks to Bethesda, MD from Montana. There are 2 other urachal patients in the study. That's all I know. NCI study # NCT02496207 is online with some results. I'm going to send you a pm, too. Bonnie
Hi Bonnie, so the Opdivo - that's typically for lung cancer patients, correct? Is it now FDA approved or is it still in trial status? (I thought it was approved already.) is the Opdivo being given with anything else- another drug? Sounds like it's a trial basis. So, what hospital is your dad getting treatment through? Thanks, Vivian

RE: Urachal Cancer Survivor

by bnelson on Sat Oct 15, 2016 09:11 PM

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He was in the clinical trial in Bethesda, Maryland. National institute of health. Opdivo is approved for lung cancer. They stopped his treatment in august.

RE: Urachal Cancer Survivor

by vtoole on Sun Oct 16, 2016 12:57 PM

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On Oct 15, 2016 9:11 PM bnelson wrote:

He was in the clinical trial in Bethesda, Maryland. National institute of health. Opdivo is approved for lung cancer. They stopped his treatment in august.
How long was your dad on Opdivo, Bonnie? Did it work initially? How long? What were the side effects? So, I'm assuming your dad's UA also metastasized to his lungs, correct? My husband refused to go on hospice and started on Alimta, a chemo, for advanced mesothelioma. He's not doing well at all. He's beyond a fighter. Hugs, Vivian

RE: Urachal Cancer Survivor

by julesgreenb on Sun Oct 16, 2016 01:46 PM

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On Oct 16, 2016 12:57 PM vtoole wrote:

On Oct 15, 2016 9:11 PM bnelson wrote:

He was in the clinical trial in Bethesda, Maryland. National institute of health. Opdivo is approved for lung cancer. They stopped his treatment in august.
How long was your dad on Opdivo, Bonnie? Did it work initially? How long? What were the side effects? So, I'm assuming your dad's UA also metastasized to his lungs, correct? My husband refused to go on hospice and started on Alimta, a chemo, for advanced mesothelioma. He's not doing well at all. He's beyond a fighter. Hugs, Vivian
Hi Vivian, He really is a fighter. Is that chemo for asbestos caused cancer? Is it helping his lungs? I totally empathize. I'm using a walker because the cancer in my back is causing me a lot of pain. I'm going to do some radiation starting end of October to hopefully alleviate some of the pain. But doing radiation means taking a break from chemo and my lungs and liver are worsening and need the chemo. It's such balancing act. Plus all the pressure in my abdomen is causing a lot of stomach issues. It's so tough. Julia

RE: Urachal Cancer Survivor

by Michaelscrosby on Wed Dec 07, 2016 11:16 PM

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Hello,

In Sept 2016 I went to the emergency room with stomach pains, not sure if related but CT scan showed Urachal Mass. Surgery in October 2016 confirmed Urachal Adenocarcinoma. Surgery went well, all of the mass was removed intact and mass was confined to the urachal mucosa and margins were negative. Surgeon removed mass en bloc and small part of bladder wall as precaution, but did not remove any more of the bladder, nor my belly button, nor any lymph nodes. The surgeon and hospital tumor board met to discuss treatment and recommended no further treatment, no further removals, no radiation, no chemo. Only plan is to follow up with CT Scans in 3 month intervals. Based on my understanding my surgery seemed to show best case scenario (assume stage 1). But I am concerned about not taking a more proactive approach to treatment. I don't really want to remove my entire bladder if not necessary but I'm not entirely comfortable with the sitting around and waiting approach either. I'd be interested to hear others opinions on the subject and if there are any other stage 1 or 2 people on here and what their treatment was? My hospital and Dr are with Piedmont Hospital here in Atlanta GA and I understand that they are somehow affiliated with MD Anderson in Houston. I am considering contacting MD Anderson for second opinion. Does anyone know of any other good hospitals for this type of cancer? Thank you all and may God bless us all.

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