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  • Helping Danny

    Putting out Some Ideas for the Family.
    I'll be e-mailing Michaels post to some of my colleagues who have contacts in Bristol Myers Squibb. I'll also send this to my Sister who works for Novartis to see what she can do.

    If you work for Pharma with an Oncology pipeline, send out Mihael's message. Let's see if we can get Danny on a Clinical Trial.

    I'll also be e-mailing my Primary Oncologist. Just because these Doctors aren't the "Quote, Un-Quote" specialists does not mean the aren't competent. They may have ideas or are willing to think outside the box. When the experts say no, they may say yes.

    I'm taking suggestions on what avenues to try and sharing mine. There's strengh and hope in numbers.
    I Love My Pack!


  • #2
    Here is what I have done so far. Have copied the post from Mikey! Please add to here because my skills are basic. To copy, highlight and then go to file. Choose save to and select text file, then save. You can then go to your e-mail choose this as an attachment and send to people through e-mail. I have mailed to all of our providers and some special people that I know. I e-mailed myself at work and will be sending to our oncologists. There are some good ones. Many of these people are so open to help....they are used to working with open ended questions. If I have extended my boundaries, they will let me know, they will just say no, or there will be no reply. The other thing that I did was to post the questions on Yahoo Answers. Of course I am getting some dorky ones, but willing to weed out these and then forward what might be an idea to Danny. Danny will know what sounds like a fit and what to toss. Once again, I will say that there is more going on here. The energy of this group has gone beyond most everything I have experienced so far. I'm not sure where this is going or what to do with it, but I am trusting the momentum of the group. Lance Armstrong helped us to understand that cancer survivors do not have to sit and take it. There is also something growing here about the power and energy of a group!!! Scott...once again....with deepest appreciation...thank-you!! Working on this is frustrating. There is no answer at this point. It is wandering in OZ, but also shares in the glow of the rainbow. Thanks to all, so glad you are there! Sharon
    Click here to support my LIVESTRONG Challenge with Team LOVEstrong.


    • #3
      The first thing that came to mind when I saw Mikey's post on Friday was to send him links to a several clinical trials running in Comprehensive Cancer Centers here in Southern California - some at USC Norris and some at City of Hope...there has to be more in other parts of the country. These were the two institutions that I came up with, perhaps there are other centers that other forum members may be aware of. Then, as Mikey already knows, I thought to cut and paste his post with a little background on Danny to an oncologist we met with in recent months at USC who oversees many of the trials - as he's also the director of curriculum for the medical school at USC. He was kind to have responded back over the weekend and I know Mikey will be trying to contact him on Monday to consult with him, because the original trial the oncologist suggested (not knowing what Danny has already been on) may not be the right fit. There's gotta be something out there...who knows, maybe word of mouth (or "word of email") may lead to the right channel for Danny.
      *Hubby Andy diagnosed 02/13/07, Left IO 02/16/07 *Stage 1A Non-Seminoma (65% Immature Teratoma / 35% Embryonal Carcinoma) *RPLND 04/27/07 Lymph Nodes-ALL CLEAR
      *Complications from Chylous Ascites so Laparotomy 05/03/07 *No food for 10 weeks, TPN only *07/18/07 Removed drains, tubes, picc line *CT Scan 07/31/07-ALL CLEAR
      *CT Scan 02/12/08-ALL CLEAR *Hydrocele surgery 06/19/08 *CT Scan 9/30/08 and 03/06/09 shows <cm left lung nodule - under surveillance


      • #4
        Just know, I thank you all. I know I'm not posting much or thanking you enough individually, but I do thank you.

        I have spent the past 72 hours doing research and compiling of possibilities for danny so that I can start a marathon of phone calls Monday morning. So far I have organized about 20 clinical trials around the country that I think could be beneficial to Danny. About 50% of them include Gemcitabine along with a new drug or a drug not usually associated with TC. Something along these lines might be danny's best chance. Another 25% include Sutent + a new drug or Avastin + new drugs. The other 25% include VERY new unknown therapies including B-Raf, MEK, H-Dak inhibitors and vaccine therapy.

        I need to find out which are open NOW and which Danny are definitely eligible for. The calls start again at the crack of dawn. In my estimation, looking at eligibility requirements, he is eligible for all of these. I then will take the narrowed down group of studies to Dr. Bosl and hope he will give us an opinion on which provide the most promise for Danny. Certainly, a study that uses Gemcitabine plus an experimental drug would be preferred to single agent Gemcitabine.

        As always ANY avenues that I may not know about are WELCOMED our way. Thank you, thank you, thank you.


        Danny has a CT scan to see the extent of what is happening.


        • #5
          An important note to add to anyone you may run Danny's case by:

          Is a doctor willing to use a novel way of combining Gemcitabine with other drugs to fight this disease. When asking this question it is important to include 'danny's stats' in terms of the drugs he has already seen.

          I think I've seen most of the Gem studies out there but there might be some being done privately by drug companies I may not be aware of, although I've found some of those too.

          Thank you again,


          • #6
            Michael, if you have tracked that many trials down you probably have this one on your list too??

            I'll ask Anthonys oncologist if he is aware of any as well. He does some research himself. He and another oncologist developed the treatment that cured my son in laws non hodgkins lymphoma 10 years ago, so he may be aware of other current studies.

            If I find anything else I will let you know..

            I know you will be very busy today and I pray that you get into one of these right away.

            God Bless

            Son Anthony DX 12/11/06
            L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
            4XEP 1/29-4/6/ 07
            AFP started increasing3 wks later
            Residual abdominal mass found on CT
            RPLND 6/8/07
            Cancer in pathology-
            80% mature teratoma, 20% Yolk Sac. --
            No adjuvent chemo and
            AFP normalised

            July 22, 2010 ---- 3 years all clear!


            • #7

              Michael, can I also assume you're already working with EmergingMed in addition to doing your own legwork?
              right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since

              Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!


              • #8
                Originally posted by Scott
                Michael, can I also assume you're already working with EmergingMed in addition to doing your own legwork?
                Have you also tried ?
                I Love My Pack!



                • #9
                  Here's another

                  I Love My Pack!



                  • #10
                    I've reached out to Jeff's ocologist at Jefferson and Jay's doctor who is now at Emory. I am praying for a response. Dianne
                    Spouse: I/O 8/80; embryonal, seminoma, teratoma; RPLND 9/80 - no reoccurrence - HRT 8/80; bladder cancer 11/97; reoccurrence: 4X
                    Son: I/O 11/04; embryonal, teratoma; VI; 3XBEP; relapse 5/08; RPLND 6/18/08 - path: mature teratoma


                    • #11
                      Hi Mikey, Hi Danny,
                      In addition to the Genentech info, will update my info and share with the oncologists at work today. I will try to look at Roche and keep going. With you, Sharon
                      Click here to support my LIVESTRONG Challenge with Team LOVEstrong.


                      • #12
                        Can anyone with access to any clinical trial database other then find any study for soild tumors that include:

                        Gemcitabine + something

                        Patupilone or ixabepilone + something

                        thanks for any info,


                        • #13
                          yes working with emerging med.



                          • #14
                            Open Letter To Doctor

                            This is an open letter that I have sent to Einhorn, Skinner, Quinn, Kantoff, and Jewitt.

                            Anyone else who feels this would be well served in the hands of anyone else, feel free to send it along, or let me know who to copy. If you would like to send it and don't have my phone number to punch into the letter, let me know and I'll PM you.

                            Thanks Everyone So Much,
                            Back to the phone/computer,

                            Dear Doctor,

                            My name is Michael Aurit. I am writing on behalf of my younger brother
                            Danny, 20 from New York City, Sloan-Kettering where Danny is currently
                            a patient. Maria Ulwelling gave me your information and suggested I email you.

                            This is a brief overview of his treatment thus far:

                            Diagnosed July 2006, Testicular Cancer non-seminoma, choriocarcinoma
                            Elevated HCG 470,000, mets in liver, lungs, abdomen
                            3 rounds BEP, 1 round EP-- HCG down to 72 and rising.
                            5 small brain mets found, radiated. Brain Mets shrunk, no active disease.
                            3 rounds TIP--- HCG down to 7 and rising.
                            Enrolled on Clinical Trial: FOLFOX 5fu + Flavopuridol, 7 rounds---
                            much success. Stablized all disease in liver, abdomen. Still disease
                            progression in left lung.
                            Tumor resection of active sites in left lung.
                            During 3 week recovery from surgery new mets appeared in RIGHT lung.
                            HGC now 12,000 and rising.
                            I should also note that a very small area of bleeding was noted on a
                            recent brain MRI. Follow-up proved brain stable. Non-sympomatic, no
                            mass efect, no enfarction.

                            Danny is very active, very fit and has alot of energy. Unbelievable
                            considering this amount of chemo, but true. He runs/exercises everyday
                            and feels good. He has normal liver and kidney function. His white and
                            red counts are good. He has run into some issues with low platelets on
                            the TIP protocol. His platelets during the FOLFOX protocol
                            administered every two weeks ranged between 80-100. However during his
                            surgery break they did recover to over 200.

                            At this point we do realize the situation. There are very few
                            conventional options left. Dr. Bosl is recommending single agent
                            therapy, Gemcitabine or oral itoposide. Or some sort of novel clinical
                            trial. They have said that HDC is off the table.

                            Danny feels very strongly about being aggressive as possible and
                            honestly wants to find something more creative, more potent and with
                            obviously unknown potential in terms of continuing with treatment. He
                            is the ultimate fighter and risk taker and feels this way about this
                            fight of his life.

                            I have searched clinical trials that combine Gemcitabine with another
                            agent, some experimental. I have also found various TKI Inhibitor
                            trials some of which combine another agent such as avastin or
                            carboplatin. I have also heard much about a class of drugs called
                            epothilones in terms of treating platinum refractory solid tumors with
                            no studies being done in germ cell cancer. Doctors at Sloan have
                            mentioned the novel idea of possibly enrolling Danny in a B-raf or MEK
                            inhibitor study.

                            I would be grateful for any opinions, advice, counsel, ideas ect. that
                            you may be able to offer. We DO have the ability, means and desire to
                            travel if necessary if it means enrolling danny in a trial that could
                            be more beneficial to him then what is being offered at Sloan or if
                            other options are given to us elsewhere that we feel are of greater
                            benifit to Danny.

                            Thank you in advance for you time and consideration. I can be reached
                            on my cell phone 24 hours a day at 646-***- ****. I would be grateful
                            to discuss with you your thoughts on Danny and can definitely provide
                            more information.

                            Thank you again,
                            Michael Aurit
                            646-***- ****


                            • #15
                              Have you tried
                              The American Society of Clinical Oncology
                              Email: [email protected]
                              Phone: 703-519-2927 or 888-651-3038
                              Fax: 703-299-1014
                              Mailing address: American Society of Clinical Oncology, 1900 Duke Street, Suite 200, Alexandria, VA 22314, Attn: Communications and Patient Information Department
                              Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                              Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.