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  • TheraCys Shortage?

    Posted by globalguy on April 21, 2012 at 1:55 pm

    Hello All. I’m new to this web site and am just beginning to find my way around.

    I will be completing my BCG treatments next week with my sixth scheduled for Thursday. I was notified that my hospital (Mass General) may not have TheraCys available due to a shortage. I’ve contacted Sanofi-Pasteur and was told there is no shortage.

    So, has anybody out there been given this message from their hospital? I really want this over and don’t want a delay in my next surgery due to an availability issue.

    Thanks in advance for your reply.


    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.

    globalguy replied 12 years, 9 months ago 6 Members · 9 Replies
  • 9 Replies
  • globalguy's avatar

    globalguy

    Member
    April 26, 2012 at 6:47 pm

    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.

  • cynthia's avatar

    cynthia

    Administrator
    April 26, 2012 at 6:40 pm

    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
  • globalguy's avatar

    globalguy

    Member
    April 26, 2012 at 4:31 pm

    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.

  • upnorth's avatar

    upnorth

    Member
    April 24, 2012 at 12:22 am

    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} :)
  • globalguy's avatar

    globalguy

    Member
    April 23, 2012 at 6:34 pm

    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.

  • globalguy's avatar

    globalguy

    Member
    April 22, 2012 at 12:37 pm

    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.

  • warrentug's avatar

    warrentug

    Member
    April 21, 2012 at 10:43 pm

    When I started on my BCG treatment back on May 9th I had to wait a few days because they couldn’t get any. I’m not sure if that was because of a shortage or because my doctor had just left a large practice to start out on his own and I was his first patient to need BCG.

    Like HLamb, I also had a ton of “Stuff” come out but usally I was o.k. in a couple days, they did make me sit out a treatment to heal up. Hopefully they will have what you need for your 6th go-around, I know I didn’t like waiting to hear if it was a go or no go.
    Good Luck.

  • hlamb88937's avatar

    hlamb88937

    Member
    April 21, 2012 at 7:30 pm

    As far as I know there is no shortage of BCG. I just finished 6 rounds and there was no shortage. However, the shortage of Mitomyicin is very severe. I might have gotten the last of it. The company now says that they have just started producing again and recently produced around 1000 vials. During the time of the Bush administration the company was told to put a cap on the price as it was too expensive. They did, but the price of the ingredients kept rising so they stopped producing it…that is until now. The only place we could find mitomyicin (and it was the last lot) was from the CIGNA pharmacy warehouse. After this round of 8 instillations of mitomyicin I am going back to BCG for maintenance as the statistics for non reoccurence and non progression are a lot better for BCG. While on BCG I had a cornucopia of various things come out in my urine. Each instillation produced a different variety of things from the previous…but in the end every test for cancer was negative…what more could I want.

  • catherineh's avatar

    catherineh

    Member
    April 21, 2012 at 5:15 pm

    Just wanted to say hello and welcome to the site. It’s frustrating to receive such conflicting information about something as important as your BCG treatments.

    I hope your treatment is not interrupted by this news. Hopefully they will get their supplies (and stories) straightened out soon.


    Best wishes… Catherine

    TURBT 1/21/10 at age 55
    Dx: T2aN0M0 Primary Bladder Adenocarcinoma
    Partial Cystectomy 2/25/10
    Vanderbilt Medical Center
    Nashville, TN

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