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TheraCys Shortage?

7 years 5 months ago #41915 by globalguy
Cynthia, thanks much for reaching out and for taking it to the next level. I've arranged a meeting with my doctor, scheduled for tomorrow morning, in order for me to put a plan in place, rather than cooling my heels. Please keep me informed as to the outcome of your efforts. Thanks again - Joe

Joe P

Diagnosed: 01/2012 - TCC CIS
All Clear: 06/2012
Diagnosed (Again): 02/04/2013 - TCC CIS
All Clear (Again): 05/03/2013
Diagnosed Yet Again 10/15/2014 - RCC
Working It
Mass General Hospital, Boston, MA.

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7 years 5 months ago #41914 by Cynthia
Here is a good article in the New England of Journal of Medicine published last Dec.

http://www.nejm.org/doi/full/10.1056/NEJMp1112633

It is a well known fact that this is a problem at the government level. I have been in contact with Senator Kerry's office of MA and talked to his aid in charge of health issues. I read her the conversation you had with Sanofi about holding back the drug due to cost issues. She has asked me to send her this thread as she would like to see it. She informed me that the President has just issued an executive order dealing with the shortages of drugs and that the FDA is looking into how to best deal with it. There is also legislation that should be passed this summer dealing with it as it is attached to a funding bill that has to be passed. However the proof will be in the pudding as they say will it change the situation?

My question for MGH or any institution providing BCG treatment is why they are not turing over every rock looking for a substitute? If Sanofi is shipping in early May did they have any idea when you could have treatment?

I know this is not of any help to you and I can understand the stress this is putting you under. I personally feel that if any company is found to be withholding drugs due to cost considerations that they should be held liable for any damages emotionally or health wise their actions cause. I want you to know that I voiced that opinion in the phone call I just placed and shall back it up in future correspondence.

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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7 years 5 months ago #41913 by globalguy
Well. I missed my last treatment today. There is no indication as to when Sanofi will be releasing TheraCys. There is an alternative treatment by the name of Oncotice. Both are interchangeable. I spoke with a rep at Mass General and was told Oncotice is not a solution which is viable for them. How about viable for me?

So I'm now in a holding pattern with my treatment and follow on care stalled. This is causing me lots of anxiety and am having a hard enough time dealing with cancer, let alone, being held hostage by Sanofi-Pasteur.

Done with my rant for today.

Joe P

Diagnosed: 01/2012 - TCC CIS
All Clear: 06/2012
Diagnosed (Again): 02/04/2013 - TCC CIS
All Clear (Again): 05/03/2013
Diagnosed Yet Again 10/15/2014 - RCC
Working It
Mass General Hospital, Boston, MA.

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7 years 5 months ago #41894 by upnorth
Huumm! Indeed. :huh:

Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
"Please don't cry because it is over..... Smile because it happened!" {Dr. Seuss} :)

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7 years 5 months ago #41890 by globalguy
Just got off the phone with Sanofi-Pasteur. It appears as if they will not have TheraCys availability until 07-May. I asked if there was a quality issue to which they replied, "no issues".

I've seen a local news report here in Boston stating several pharmaceutical companies are holding back cancer treatment stock, due to decreased profit margin. I asked if this was the case. When I asked the S-P rep if the report was true, she stated that officially she could not answer that question. I asked again and received the same response. Hmmm

So no availability here at Mass General Hospital. Also, the interchangeable Oncotice, is not on MGH's protocol. And so it goes.

Joe P

Diagnosed: 01/2012 - TCC CIS
All Clear: 06/2012
Diagnosed (Again): 02/04/2013 - TCC CIS
All Clear (Again): 05/03/2013
Diagnosed Yet Again 10/15/2014 - RCC
Working It
Mass General Hospital, Boston, MA.

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7 years 5 months ago #41880 by globalguy
Thanks all. I guess I'll have to stay on top of the hospital admins and Sanofi.

This weekend was pretty tough. Ridiculous fatigue and body aches but feeling better now. One to go!!!

Joe P

Diagnosed: 01/2012 - TCC CIS
All Clear: 06/2012
Diagnosed (Again): 02/04/2013 - TCC CIS
All Clear (Again): 05/03/2013
Diagnosed Yet Again 10/15/2014 - RCC
Working It
Mass General Hospital, Boston, MA.

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