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  • don't under estimate the power of GEM+EPI.

    Hi Forum Family,

    I thought we'd put the 'unexpected surgery' thread to rest. Been there, done that, moving on, thank you come again...

    Today, we had the great pleasure of meeting with Dr. Bosl. At this point, Danny and I are just so darn happy when we get to see him that our nipples simultaneously harden with glee when he walks in the room. I can't speak for my parent's outward signs of excitement because they generally wear thicker shirts then us, but I'm sure they become equally aroused at sight and sounds of the fine doctor.

    Looks like a nasty fight with Bosl over Danny's treatment timing that I had thoroughly prepared for will not be necessary. Bosl is taking the neurosurgeon's advice for treatment to begin 2 weeks post surgery. So he'll start GEM-EPI again one week from today as long as his platelets are close to 100. I admit, I was surprised. I think quite frankly, that Bosl was surprised to see Danny practically 'bouncing off the walls' healthy and energetic.

    Several things were discussed.

    1. Bosl says it's too soon to pass judgement on the efficacy of GEM-EPI although with some pressing I was able to SQUEEZE out of him that the initial response left him hopeful.

    2. We wanted to discuss the possibility under certain circumstances that Radiofrequency Ablation on the existing lung tumors be considered. Although this is a local therapy that only destroys the tumor itself and does nothing to treat the disease systemically, we wanted it to be an option on the table in case we wanted to act on it at some point. He poo-pooed it for reasons that I think a case can certainly be made against, but agreed that he'd refer us to an interventional radiologist (who he said would concur with him) if we really wanted to pursue it. We'll see on that one...

    3. We wanted to once and for all find out Bosl's final stance on the question of HDC. I laid out the precise hypothetical criteria that 'a doctor in the midwest' communicated to us as necessary to happen for him to seriously consider the administering of HDC with the intent of cure. Bosl said that given these circumstances or any other he would absolutely not consider HDC. It was then that swiftly kicked him in the groin and pinched his checks as he doubled over.

    Just kidding.

    4. Finally we discussed with him something totally different that I don't think I've mentioned here before. Over the past month, I've done quite a bit of research on a company called TGen and some of the very novel work they are doing to fight refractory tumors. TGen is quickly becoming a major player in the molecular biology research industry. We've been intouch with the patient coordinator and sent Danny's records to their headquarters in Phoenix (of all places). Several days ago, I got an email back saying that danny would be a candidate for what they have to offer and today I spoke with a nurse at TGen confirming that the doctors have reviewed his case and approved him for the study.

    This program is about as cutting edge as it gets. It involves the molecular profiling of dannys active cancer cell mutation and doing an array of the cancerous cells to predict and determine what chemotherapy drugs/ immunotherapy/inhibitors his individualized tumor make-up might be sensitive to. I was turned on the idea by Fed a long while back who had heard of this sort of thing being experimented with. From what I know, often times in patients who have been involved with this, a cocktail that NEVER would have been considered due to the type of cancer was attempted as a result of molecular profiling and showed great success. This type of individualized care could very well be the future of cancer care.

    For those interested in this you can watch a recent report on CBS News here:



    The company itself can be looked at on:


    &
    Caris fulfills the promise of precision oncology through advanced laboratory testing, including tumor profiling and blood-based cancer diagnostics.


    The specific study that is a possibility for Danny to become involved in can be looked at here:



    Of course it is first and foremost in our hearts and minds that Danny continues to respond in a most spectacular way to GemEpi. DON'T UNDERESTIMATE THE POWER OF GEM-EPI!!! We pray that Danny not need to ever be apart of this 'cutting edge' approach, but we are keeping it on the table as another option and I wanted to share it with you all.

    By the way, Bosl's response to all of this was that it would be very difficult to obtain the biopsy TGen would need for the profiling.

    He is swell.

    With that, Danny's appointment ended and we took turns giving Bosl great big warm bear hugs on the way out the door. Danny touched him inappropriately on the buttocks and Bosl giggled like a little school girl.

    Danny has an MRI tomorrow morning and appointments with his surgeon and*neurologist in the afternoon. The staples are coming out! YES!

    Anyway, that's the story. You know, today was actually a very special and important day. For us, it marks the beginning of the New Year. I believe that this is the year of hope. This is Danny's year.

    My whole family sends love to all of you!!!

    G'night,
    Mikey

  • #2
    What a great start to a new year. A year of hope sounds like a wonderful thing. Happy new year to you and your entire family.
    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.

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    • #3
      Having this thrust upon you, I must say All of you wear the mantle of Hero, Leader, and Inspiration extremely well. To a brand new year of hope. To Danny's year.
      I Love My Pack!

      sigpic

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      • #4
        I couldn't be more proud to call you both my friends. Keep it up!
        Scott, [email protected]
        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!

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        • #5
          Quite a post...the Aurits are moving forward as ever. I can just see the imp in Danny giving Dr. Bosl a "pat." I am sure he has never come across a family like yours before. Happy New Year, wishing you the absolute best. 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

          Comment


          • #6
            Michael, I swear you should write a section in the New York Times, your writing is so powerful with a witty edge.

            I am really proud of all of you. Go get em!
            Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
            Current DVT
            Current testosterone replacement therapy, Testim.

            "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

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            • #7
              Once again! i have to say that you and Danny are AMAIZING people!! you get'em Danny!!! this cancer is going to loose its battle once and for all!! yes yes yes!!!


              GO DR BOSL!! GO DANNY!!!! GO MICHAEL!!! DIE CANCER!!!!!!!!!


              hugs to you!

              Dawn
              Fiance Brian, dx:stage IIIC non-sem 4/18/07
              mets to lungs,liver,abdomin,large tumor near kidney
              hcg was 176,000!
              completed 1 rnd of TIP(had bad reaction to taxol)
              BEPx3 until 7/13/07
              7/26/07 post chemo ct-scan shwd shrinkage & fewer lung tumors
              10/17/07 @ MSKCC Liver FREE of cancer! necrotic & small focus of teratoma.
              AFP & HCG normal
              12/7/07 RPLND,right orchiectomy @ MSKCC
              12/18/07, rcvd pathology,all clear! no cancer!
              2/11/08 -Lung surgery dne @ MSKCC
              ALL CLEAR

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              • #8
                Mikey,

                All I can say is that everything you wrote is full of good promise. I'm glad you guys are moving ahead with the molecular profiling. Although, like Bosl said, there could be potential difficulties in obtaining a biopsy sample, if you're able to pull it off, it would be a great way to get "personalized medicine", an idea that has been gaining some traction in the cancer biology community. I'd be very interested in hearing how that will work out.

                It is also fantastic that Danny will start with the Gem-Epi soon. Like you, I am very hopeful that this will provide a great avenue for treatment.

                Shana tova to you and your family,
                "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
                11.22.06 -Dx the day before Thanksgiving
                12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

                Comment


                • #9
                  Occasionally I slip into the druthers of work...and take a quick break to the tc forums....(which makes me wonder, did I ever think I'd be pulling myself out of the mundane issues of work, with a visit to a cancer forum...)

                  and I read a post like this and it makes my day....great mix of humor & hope all in one update.

                  best wishes & happy new year.

                  pete
                  - lump first noticed 11/20/2005
                  - I/O right Dec 8, 2005
                  - 95% embryonal / 5% seminoma
                  - normal markers PRE surgery
                  - no vascular invasion, tunica free of cancer, epididymis free of cancer, lungs free, lymph free
                  - Stage I diagnosis
                  - surveillance
                  - mid feb '06, beta hcg slightly elevated = 4.6...small enlarged lower node seen on CT scan...
                  - 3BEP began feb 20, 2006
                  - finished 3 BEP, last bleo, april 17, 2006
                  - CT scan, blood markers, chest..all clear
                  - back on surveillance

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                  • #10
                    What a great first day of the New Year!!!!

                    You are one "patient advocate" NOT to be messed with!!!!!!!!!

                    Love to you both.
                    Rob and Stacy
                    DX: 3/10/05, AFP: 15,047, L I/O: 3/28/05, Yolk sac tumor & teratoma, Stage IIIC, 3xBEP & 1xEP: 4/4/07 - 6/25/07, AFP: 14, RPLND 8/10/07, w. left kidney removed. 10/19/07, AFP: 1.9

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                    • #11
                      It's out past words for me right now. Just picture the smile on my face. Half here on earth, half someplace way out near Saturn. Livestrong, Lovestong, Sharon
                      Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

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                      • #12
                        I'm so glad to hear the news!!!! Your happiness is jumping right out of the computer screen.

                        Danny you are truly an amazing human being, you have been knocked down many times but you keep getting back up stronger than ever. Cancer doesn't have a shot with you.

                        As for you Mikey, what can I say but YOUR THE BEST
                        WATCH OUT CANCER, WATCH OUT WORLD ! ! ! ! ! ! !

                        Your family must be so proud of you guys, true warriors!
                        Krista
                        Brother Diag. 10/05 Non-Sem.
                        Right I/O 11/05
                        Surv
                        4XBEP 8/06
                        RPLND 12/06
                        2X VIP 1/22/07
                        Only completed 1 Rd.

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                        • #13
                          Wonderful post Mikey. Gave me smiles and goose bumps.
                          Happy New Year to you, Danny and your family.

                          Diane

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                          • #14
                            Originally posted by dannysbrother
                            So he'll start GEM-EPI again one week from today as long as his platelets are close to 100.
                            Is today the day?
                            Scott, [email protected]
                            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!

                            Comment


                            • #15
                              Thinking about you!!!!! Sharon
                              Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

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