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Information about bladder removal

4 years 2 days ago #47678 by sara.anne
Here are a couple of good summaries...pros and cons

http://www.forbes.com/sites/matthewherper/2014/12/07/here-is-what-60-minutes-didnt-tell-you-about-the-billionaire-who-is-trying-to-disrupt-cancer-care/



http://www.forbes.com/sites/matthewherper/2014/09/10/medicines-manhattan-project-can-the-worlds-richest-doctor-fix-health-care/

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 2 days ago #47677 by breeze2001
I was wondering if anyone saw Dr. Soon Shiong on 60 minutes last night? Is anyone familiar with him and/or have an opinion of his unconventional cancer treatment?
Thank you,

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4 years 5 days ago #47657 by Cynthia
Your welcome. My son is in a clinical trial and we are of course hopeful for remission at last. As for the abriviation of blc it is for bladder cancer, breast cancer is bc so that is how it is done as not to cause confusion.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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4 years 5 days ago - 4 years 5 days ago #47648 by fighterm
Cynthia, thank you for your reply. I hope your son is completely cured. But the side effects can be lasting.
BTW, What is blc?
I like this forum and you guys are extremely helpful.

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.

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4 years 6 days ago #47644 by Cynthia
Fighterm, All are welcome here and we are all free to post as we wish as long as they adhere to the terms and conditions. Such as commercial posts or bullying or the such and we all try very hard to not give medical advise just share information. We feel that informed medical consumers are more able to make informed decisions with their medical team.

If you would like to post research article the Articals Of Interest section is provided for that. I find that once it is posted there one can provide the link to it in other posts quite easily.

You will find that everyone has a different way of using the forum some for information some for support some for both, every forum has its own character and is constantly evolving.

You will find that more than one of us are dealing with more than one cancer either concurrently or as survivors. Personally my oldest son is dealing with Lukemea (all) so I am very aware of tracking treatments that might be applicable to another form of cancer one day. I also have an intense interest in anything on metatastic blc as I get a lot of those calls at our office so I try to know what is available on that clinical trial front.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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4 years 6 days ago #47641 by fighterm
Hi Cynthia, thank you for your reply. Being a long term member on lymphoma forum I can share some of their experiences. They post regularly (almost every other day) news about lymphoma and sometimes include other cancers. We discuss different treatment options, results of different clinical trials, newer methods etc. That gives people hope of survival. And yes, the trials are very competitive. But I am not excited about combinations of old chemo agents. As I read in one paper there were no new drugs for 30 years for BC. So people are used to think along the old options. Besides, BC is not as deadly as some other cancers. At least estimated 800,000 people live now with it in the US. I hope the situation with new drugs and new options will change soon for all cancers, even difficult ones. Because there is a big breakthrough in cancer happening now. I do consider BC a difficult one because it has the highest rate of recurrence among all cancers. As to my lymphoma treatment I take a combination of a specific antibody and an alkylating agent. So far all my lympho masses have cleared on my midway scan in October, I will have my next scan after my last treatment cycle in January. Then I am ready to deal with TCC.
I hope you don't want me to stop discussions about new methods, right? I maybe a little ahead because some of the new ones are not offered for BC yet. From those that are offered now my biggest excitement is about PD-L1 antibody.
I mean this one
(MPDL3280A, an anti-PD-L1 antibody made by Roche/Genentech, is undergoing a phase I trial, which showed that it shrank tumors in 13 out of 30 patients who had been previously treated for metastatic bladder cancer, and the responses were rapid and ongoing. The trial is continuing (NCT01375842) and there is a phase II trial in bladder cancer patients which just started (NCT02108652).)

I live in Canada and not all trials are available here. Besides, I cannot qualify for any of them because I have two cancers and they want only one. :P

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.

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