Urachal Cancer Survivor

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RE: Urachal Cancer Survivor

by vtoole on Tue Dec 12, 2017 04:44 PM

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On Dec 12, 2017 4:07 AM Limarick wrote:

Hello all, I am a 71 year old.  I have been on line for some time today searching for more information on UC.  I have done a fair bit of research in medical journals for therapeutic options since my diagnosis in October 2016.

I had surgery within days of the diagnosis to remove the tumour, and a further and wider margin surgery two weeks later, which removed the bladder dome and the lower half of the urachus. The cancer was 2 cm in diameter, and had not yet started to bleed.  In fact, I did not have any symptoms.  The lump was picked up following a routine ultrasound scan of my bladder during a prostate examination.

Histology reports indicated that there was some spread to outside the bladder, but nowhere else.  At surgery, the surgeon found no spread and no lymph node involvement.  The margins of the excisions were clear of cancer.

Within a month of the second lot of surgery, I underwent chemotherapy, using Gemcitabine and Cisplatin regime, over a three weekly cycle for four cycles.  That finished in February this year.

Since then, I have had chest X-rays, bladder scans and cystoscopy under general anaesthetic, the last being 1 month ago.  I am advised that they show no signs of recurrence.

I have written a blog on Facebook over the past 14 months, under Urachal Adenocarcinoma.  So if you want to read the full story, it is all in there.  Start from posting #1.  It is now at posting #51.

What I am looking for is any information on immunotherapy for UC.  Immunotherapy seems to be the latest in the trend to treat cancers, using drugs to stimualte/awaken the body's natural immune response to cancer cells.  Seems very logical in that our immune system had failed to recognise the cancer cells were "bad cells" and now needs to be awaken to recognise the bad cells and remove them.

If you know of any research on the latter, please point me in the right direction.

Limerick, I am sorry to find you on this page. It sounds like you have done a lot of research. I’m wondering if you’ve gone back in these 90+ pages to read the wealth of information contained herein with regard to treatments, including experimental and immunotherapy? It’s a treasure trove of good info. My husband underwent the same surgery(ies) chemo treatments as you (where did you have your treatments?) and also several experimental treatments. He also underwent immunotherapy which did not work for him. His body did not have the capability to understand it must fight back. It only allowed the cancer to multiply and spread wildly. In retrospect, I have not understood why they did not test him for PDL-1 before beginning the immunotherapy since it was created to treat patients with that abberation. I also assume since he had a genetic abberation (he had the Foundation 1 genetic testing) called TP53, which technically was a “switch” that didn’t work to “turn off” the proliferation of the cancer cells, they should have considered this another missing piece and/or obstacle, if you will, to aid in his body responding to the immunotherapy. Perhaps, you might consider such a genetic test to discover what genetic components your body has or is lacking to help guide you and your team in further treatment options. Wishing you and all here on this site the best of luck in your journeys. This is a rare and difficult cancer.

RE: Urachal Cancer Survivor

by tkkc4421 on Wed Dec 13, 2017 12:26 AM

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I would recommend to anybody that has cancer they go ahead and have the tumour tested for what type of mutations it actually has genomic‘s for life does it here in Australia cost around $6000 but knowing exactly what you are trying to treat makes a lot of sense once I found the four mutations in my tumour my oncologist and I have been Searching for drugs that pacifically target my mutations I start a new treatment in a couple of days they are leukaemia tablets but unknown to have a direct effect on two of the no mutations in my tumour that drives the growth and also the scar tissue around the tumour the drug I will be taking is Iclusig Car T Cell therapy Is a very good option it would seem if you can have the right proteins to target and your tumour there are some trials happening in the US and they are only taking US patients they are also trialling this therapy in China

RE: Urachal Cancer Survivor

by Limarick on Wed Dec 13, 2017 01:58 AM

Quote | Reply

On Dec 12, 2017 4:44 PM vtoole wrote:

On Dec 12, 2017 4:07 AM Limarick wrote:

Hello all, I am a 71 year old.  I have been on line for some time today searching for more information on UC.  I have done a fair bit of research in medical journals for therapeutic options since my diagnosis in October 2016.

I had surgery within days of the diagnosis to remove the tumour, and a further and wider margin surgery two weeks later, which removed the bladder dome and the lower half of the urachus. The cancer was 2 cm in diameter, and had not yet started to bleed.  In fact, I did not have any symptoms.  The lump was picked up following a routine ultrasound scan of my bladder during a prostate examination.

Histology reports indicated that there was some spread to outside the bladder, but nowhere else.  At surgery, the surgeon found no spread and no lymph node involvement.  The margins of the excisions were clear of cancer.

Within a month of the second lot of surgery, I underwent chemotherapy, using Gemcitabine and Cisplatin regime, over a three weekly cycle for four cycles.  That finished in February this year.

Since then, I have had chest X-rays, bladder scans and cystoscopy under general anaesthetic, the last being 1 month ago.  I am advised that they show no signs of recurrence.

I have written a blog on Facebook over the past 14 months, under Urachal Adenocarcinoma.  So if you want to read the full story, it is all in there.  Start from posting #1.  It is now at posting #51.

What I am looking for is any information on immunotherapy for UC.  Immunotherapy seems to be the latest in the trend to treat cancers, using drugs to stimualte/awaken the body's natural immune response to cancer cells.  Seems very logical in that our immune system had failed to recognise the cancer cells were "bad cells" and now needs to be awaken to recognise the bad cells and remove them.

If you know of any research on the latter, please point me in the right direction.

Limerick, I am sorry to find you on this page. It sounds like you have done a lot of research. I’m wondering if you’ve gone back in these 90+ pages to read the wealth of information contained herein with regard to treatments, including experimental and immunotherapy? It’s a treasure trove of good info. My husband underwent the same surgery(ies) chemo treatments as you (where did you have your treatments?) and also several experimental treatments. He also underwent immunotherapy which did not work for him. His body did not have the capability to understand it must fight back. It only allowed the cancer to multiply and spread wildly. In retrospect, I have not understood why they did not test him for PDL-1 before beginning the immunotherapy since it was created to treat patients with that abberation. I also assume since he had a genetic abberation (he had the Foundation 1 genetic testing) called TP53, which technically was a “switch” that didn’t work to “turn off” the proliferation of the cancer cells, they should have considered this another missing piece and/or obstacle, if you will, to aid in his body responding to the immunotherapy. Perhaps, you might consider such a genetic test to discover what genetic components your body has or is lacking to help guide you and your team in further treatment options. Wishing you and all here on this site the best of luck in your journeys. This is a rare and difficult cancer.

Thank you vtoole.  I will go back and re-read the postings.

This is indeed a rare cancer. Because of the paucity of numbers of patients in any one location, research based on patient numbers and chemotherapy/immunotherapy regimes are difficult to establish.  Most reports are comparison of single cases matched against journal reports of a few cases.

Based on the oft quoted 1 in 1 million population gets this cancer, in Australia, there'd be 24 cases and the USA would have 320 cases spread throughout the respective countries.

China, with a population of 1.4 billion may have bigger patient samples and possibly be the place for the research.

RE: Urachal Cancer Survivor

by Limarick on Mon Jan 01, 2018 11:22 AM

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Hi tkkc4421

Thank you for your response.  I am certainly keen to learn more about Iclusig Car T Cell Therapy.

You mention that it costs $6000 in Australia.  Are you Australian?  Where are you getting your treatment and with whom?

I live in Brisbane, Australia.

RE: Urachal Cancer Survivor

by MarksMom on Mon Jan 01, 2018 11:51 PM

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An update on Mark. His first PET scan came back clear, which is wonderful. He and I travel to Houston on Jan. 3 to M.D. Anderson, and, on January 12, to Washington Univ. School of Medicine/Barnes in St. Louis to meet with a urologist/oncologist who has done the en bloc resection he still needs. This has been an incredible year, beginning on Jan. 29 with my husband, Mark’s dad, having a massive stroke caused by radiation-induced stenosis from his own battle with Stage IV cancer 13 years ago. He really fought back, just as he had with cancer, even returning to tutoring chemistry at our local college. About two weeks before Mark’s bleeding started him on his journey, Bob’s vascular surgeon found his remaining carotid had suddenly moved from 70 to more than 85 % blocked, and he had an 8-hour procedure right before Christmas. We cannot wait for February, hoping that, once Mark’s surgery is behind him, these will both become big bumps in the road, both needing still to be watched but, hopefully, Mark will be one of the lucky ones. Question — Mark had the partial cystectomy. How long will the recovery be from the en bloc resection? He is healthy. Thanks so much. And, happy new year, everyone!

RE: Urachal Cancer Survivor

by vtoole on Tue Jan 02, 2018 01:58 AM

Quote | Reply

On Jan 01, 2018 11:51 PM MarksMom wrote:

An update on Mark. His first PET scan came back clear, which is wonderful. He and I travel to Houston on Jan. 3 to M.D. Anderson, and, on January 12, to Washington Univ. School of Medicine/Barnes in St. Louis to meet with a urologist/oncologist who has done the en bloc resection he still needs. This has been an incredible year, beginning on Jan. 29 with my husband, Mark’s dad, having a massive stroke caused by radiation-induced stenosis from his own battle with Stage IV cancer 13 years ago. He really fought back, just as he had with cancer, even returning to tutoring chemistry at our local college. About two weeks before Mark’s bleeding started him on his journey, Bob’s vascular surgeon found his remaining carotid had suddenly moved from 70 to more than 85 % blocked, and he had an 8-hour procedure right before Christmas. We cannot wait for February, hoping that, once Mark’s surgery is behind him, these will both become big bumps in the road, both needing still to be watched but, hopefully, Mark will be one of the lucky ones. Question — Mark had the partial cystectomy. How long will the recovery be from the en bloc resection? He is healthy. Thanks so much. And, happy new year, everyone!
Hello Mark’s Mom, My goodness, you surely have your hands more than full. This caretaking of two - not just one - people must be so hard on you! My thoughts are with you. My husband had the partial cystectomy at the same time as the en bloc resection and he was 59. He was back at work part time within a week...Your son should be doing vwell within short order. They had my husband up and walking the day after the surgery; they don’t like to waste any time getting patients back on their feet and headed toward a quick recovery. Question - why are you going to MDA and St. Louis? Just curious? Are both hospitals conferring? Wishing you and your family some recuperative time soon. Please keep us posted on Mark’s and your husband’s progress! Vivian

RE: Urachal Cancer Survivor

by MarksMom on Tue Jan 02, 2018 12:49 PM

Quote | Reply

On Jan 02, 2018 1:58 AM vtoole wrote:

On Jan 01, 2018 11:51 PM MarksMom wrote:

An update on Mark. His first PET scan came back clear, which is wonderful. He and I travel to Houston on Jan. 3 to M.D. Anderson, and, on January 12, to Washington Univ. School of Medicine/Barnes in St. Louis to meet with a urologist/oncologist who has done the en bloc resection he still needs. This has been an incredible year, beginning on Jan. 29 with my husband, Mark’s dad, having a massive stroke caused by radiation-induced stenosis from his own battle with Stage IV cancer 13 years ago. He really fought back, just as he had with cancer, even returning to tutoring chemistry at our local college. About two weeks before Mark’s bleeding started him on his journey, Bob’s vascular surgeon found his remaining carotid had suddenly moved from 70 to more than 85 % blocked, and he had an 8-hour procedure right before Christmas. We cannot wait for February, hoping that, once Mark’s surgery is behind him, these will both become big bumps in the road, both needing still to be watched but, hopefully, Mark will be one of the lucky ones. Question — Mark had the partial cystectomy. How long will the recovery be from the en bloc resection? He is healthy. Thanks so much. And, happy new year, everyone!
Hello Mark’s Mom, My goodness, you surely have your hands more than full. This caretaking of two - not just one - people must be so hard on you! My thoughts are with you. My husband had the partial cystectomy at the same time as the en bloc resection and he was 59. He was back at work part time within a week...Your son should be doing vwell within short order. They had my husband up and walking the day after the surgery; they don’t like to waste any time getting patients back on their feet and headed toward a quick recovery. Question - why are you going to MDA and St. Louis? Just curious? Are both hospitals conferring? Wishing you and your family some recuperative time soon. Please keep us posted on Mark’s and your husband’s progress! Vivian
I am so glad to hear that news! Thank you. Mark is disabled and relies on medicare/medicaid for his healthcare. Medicaid is only good in the state of residence, unless the hospital or doctor has signed an agreement to be a provider for that state. Barnes has signed that agreement, since it sees so many patients from Illinois, and we were very fortunate to find a surgeon there who has experience with the en bloc resection. No one in Central Illinois, in spite of our having an excellent teaching hospital, Memorial in Springfield, has experience with urachal cancer. His oncologist here will take the recommendations from M.D.Anders on to guide his follow-up work with Mark and from the urologist/oncologist in St. Louis who will do Mark's surgery. We were prepared to pay and have Mark's surgery in Texas, but it happened Bob's surgery, because it was so risky and unusual, was done at Barnes by a vascular surgeon there with experience with the complexity presented by Bob's situation, and he suggested our oncologist check with Barnes and Washington Univ. about Mark's procedure. We were thrilled to find someone closer, a three-hour drive instead of a flight.

RE: Urachal Cancer Survivor

by vtoole on Tue Jan 02, 2018 06:01 PM

Quote | Reply

On Jan 02, 2018 12:49 PM MarksMom wrote:

On Jan 02, 2018 1:58 AM vtoole wrote:

On Jan 01, 2018 11:51 PM MarksMom wrote:

An update on Mark. His first PET scan came back clear, which is wonderful. He and I travel to Houston on Jan. 3 to M.D. Anderson, and, on January 12, to Washington Univ. School of Medicine/Barnes in St. Louis to meet with a urologist/oncologist who has done the en bloc resection he still needs. This has been an incredible year, beginning on Jan. 29 with my husband, Mark’s dad, having a massive stroke caused by radiation-induced stenosis from his own battle with Stage IV cancer 13 years ago. He really fought back, just as he had with cancer, even returning to tutoring chemistry at our local college. About two weeks before Mark’s bleeding started him on his journey, Bob’s vascular surgeon found his remaining carotid had suddenly moved from 70 to more than 85 % blocked, and he had an 8-hour procedure right before Christmas. We cannot wait for February, hoping that, once Mark’s surgery is behind him, these will both become big bumps in the road, both needing still to be watched but, hopefully, Mark will be one of the lucky ones. Question — Mark had the partial cystectomy. How long will the recovery be from the en bloc resection? He is healthy. Thanks so much. And, happy new year, everyone!
Hello Mark’s Mom, My goodness, you surely have your hands more than full. This caretaking of two - not just one - people must be so hard on you! My thoughts are with you. My husband had the partial cystectomy at the same time as the en bloc resection and he was 59. He was back at work part time within a week...Your son should be doing vwell within short order. They had my husband up and walking the day after the surgery; they don’t like to waste any time getting patients back on their feet and headed toward a quick recovery. Question - why are you going to MDA and St. Louis? Just curious? Are both hospitals conferring? Wishing you and your family some recuperative time soon. Please keep us posted on Mark’s and your husband’s progress! Vivian
I am so glad to hear that news! Thank you. Mark is disabled and relies on medicare/medicaid for his healthcare. Medicaid is only good in the state of residence, unless the hospital or doctor has signed an agreement to be a provider for that state. Barnes has signed that agreement, since it sees so many patients from Illinois, and we were very fortunate to find a surgeon there who has experience with the en bloc resection. No one in Central Illinois, in spite of our having an excellent teaching hospital, Memorial in Springfield, has experience with urachal cancer. His oncologist here will take the recommendations from M.D.Anders "" target="_blank" rel="nofollow">http://M.D.Anders " target="_blank" rel="nofollow">M.D.Anders on to guide his follow-up work with Mark and from the urologist/oncologist in St. Louis who will do Mark's surgery. We were prepared to pay and have Mark's surgery in Texas, but it happened Bob's surgery, because it was so risky and unusual, was done at Barnes by a vascular surgeon there with experience with the complexity presented by Bob's situation, and he suggested our oncologist check with Barnes and Washington Univ. about Mark's procedure. We were thrilled to find someone closer, a three-hour drive instead of a flight.
Well, then, I am so grateful that they will follow the guidelines of MDAnderson!!! I went back on the thread and noticed I had been in touch with you before and had recommended MDA. I am grateful you can combine the two doctors/hospitals. That’s really how our medical system should work! I wish the very best for your son and your husband. Most especially, I am thinking of you in the difficult role of caretaker. Best wishes!!!

RE: Checking in

by BunnyBaby on Wed Feb 21, 2018 07:22 AM

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Hi. Just wondering how is everything going now? Do you need to go back to Japan in future for check up? I was diagnosed with uterine carcinosarcoma in Nov 2017.  Operated on 7 Dec 2017 and remove uterus, ovaries, fallopian tubes, cervix and surrounding tissues and also 2 lymph nodes (as cancer cells spread to lymph nodes).  I am going to Japan for immunotherapy from Sydney on 27 Feb 2017. Hopefully everything will go well.

RE: Checking in

by vtoole on Wed Feb 21, 2018 05:12 PM

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On Feb 21, 2018 7:22 AM BunnyBaby wrote:

Hi. Just wondering how is everything going now? Do you need to go back to Japan in future for check up? I was diagnosed with uterine carcinosarcoma in Nov 2017.  Operated on 7 Dec 2017 and remove uterus, ovaries, fallopian tubes, cervix and surrounding tissues and also 2 lymph nodes (as cancer cells spread to lymph nodes).  I am going to Japan for immunotherapy from Sydney on 27 Feb 2017. Hopefully everything will go well.

This is a site for people with urachal adenocarcinoma!
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