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  • Third Line?

    got the ever dreaded news today that high dose chemo (with 1 transplant) is totally ineffective against my buddies embryonal carcinoma.he is being treated at sloan,and went for 4 doses of taxol,ifosfamide,carboplatin,and etoposide.numbers dropped to an all time low of 8,000 hcg.in ONE week after his last chemo,the numbers jumped to 56,000.the lower back pain started again,and the tumor in his abdomen is the culprit,putting pressure on his kidneys.he now has multiple bi lateral lung mataphasis that have re-appeared.he is going for an EXTRA expierimental chemo regimen tommorrow.oxaliplatin,and gemcitabine.einhorn himself is going to review the case cause motzer and bajorin requested it.rplnd is NOT an option because the recovery time would take away too much from chemo.hes gone for 8 cycles,starting his ninth tomorrow.hes now also accepts that this is essentially just to extend his life period.when he asked his hometown oncologist,dr. cooper of yale,if his "cancer was as bad as Lance Armstrong's",the onc told him hed rather have Armstrongs cancer any day.his hcg was more then triple his(363,760) compared to (109,000),and he is absolutely platinum refractory.these are probably the lowest hours of my life.

  • #2
    I'm so sorry, Derek.
    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


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    • #3
      Derek:
      I cannot even begin to express my sorry for you and your friend. Stay strong for him and for yourself.
      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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      • #4
        a prayer was just asked for you and your friend! please be strong and dont ever give up hope. there are always set backs but never give up!!!! my thoughts and prayers are with you each day!!
        diagnosed 01/15/2005 bi-lateral seminoma stage IIa,4cm lymph node, right I/O & partial left I/O mar/2005, 18 days of radiation, remaining left I/O- aug/2005, surveillance, Wife did IVF oct/2005, DAD OF BABY GIRL born 08-02-2006!!! testosterone implants May 2008

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        • #5
          thanks guys for the support.i have a little information on the two newest drugs which id like to share.gemcitabine,or Gemzar is the treatment method Einhorn preferred in my friends case because he wasnt sure if oxaliplatin would be to caustic for him to handle.nonetheless,he was given his first dose of both drugs yesterday.they are both colorless liquids,but oxaliplatin seems to give people an extreme adverse reaction to cold.he was told he should wear gloves while reaching nto the refrigerator and and freezer because he could do some nerve damage by not protecting exposed skin on his extremeities especially.he has to wear a scarf,hat and hood when going outside,and the car should be warmed up ahead of time.the reason him and his oncologists disregarded Einhorns direction,is because it has come to the desperation point,and my buddy thinks he can handle both,and why not give it a try.after getting the drugs,he drank a lukewarm sip of vitamin water,which felt so cold to him in his throat,that his airway constricted and he had a non rebreather mask placed on him for a few moments afterwords,and the feeling subsided.his hometown onc told him he would treat him as long as my buddy wanted treatment.he told me he would take the treatment until the very last day,whether he went into remission or died from it.we are looking into hollistic medicines now,and from what im told there ARE a few more chemotherapy drugs out there which he hasnt tried.im looking into an herb called Artemisinin,which could have some effect.any other ideas or advice?

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          • #6
            It sounds like you're covering all possible options.

            You and your friend are in my thoughts and prayers.

            Jim
            Fish
            TC1
            Right I/O 4/22/1988
            RPLND 6/20/1988
            TC2
            Left I/O 9/17/2003
            Surveillance

            Tho' much is taken, much abides; and though we are not now that strength which in old days moved earth and heaven; that which we are, we are; one equal temper of heroic hearts, made weak by time and fate, but strong in will; to strive, to seek, to find, and not to yield.

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            • #7
              .

              I can no more read your story because I'm going to cry. It's simply terrifying....
              2005-03
              Stage III EC 85% + Sem 15%
              AFP=2.6; HCG=10, 20,28 and rising
              FULL CAT scan:
              -abdominal lymph clear
              -subpleural lungs metastasis [bipulmonary lesions with diam <= 1cm]
              4 x BEP changed to 3 x BEP at my request
              from 2005-05....Surveillance

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              • #8
                sorry.unfortunately this is actually my life.

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                • #9
                  Hi Derek,

                  I cant offer any real help or advice, but you might be interested in reading these:

                  Gemcitabine and oxaliplatin (GEMOX) in patients with cisplatin-refractory germ cell tumors

                  Activity of Oxaliplatin in Patients With Relapsed or Cisplatin-Refractory Germ Cell Cancer

                  Combination Chemotherapy With Gemcitabine Plus Oxaliplatin in Patients With Intensively Pretreated or Refractory Germ Cell Cancer

                  I hope things work out for your friend,

                  Steve
                  Left I/O March 05, nonseminoma;
                  Relapse July 05, single lymph node 3cm;
                  2 x BEP Aug / Sept 05, node grown to 4.7cm;
                  2 x VeIP Sept / Oct, node grown to 6.7cm, markers normalised;
                  RPLND Dec 05, no active cancer;
                  back on surveillance

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                  • #10
                    I'm so sorry to hear about this, Derek. You're a good friend.
                    Left I/O 5/9/05, 100% Embryonal Call Carcinoma, Stage IIIa, Laparoscopic RPLND 7/19/05, 4X EP 9/05-11/05

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                    • #11
                      I don't know what to say.

                      Stay positive, and do whatever you can to cheer your buddy up.

                      As a person in surveillance, your story is IMMENSLY saddening.

                      However... Thanks for writing it.

                      Merc.
                      Diagnosed TC 3rd Sep 2005
                      Right I/O 6th Sep 2005
                      10% carcinoma, 5% seminoma, 50% mature teratoma, 35% Yolk-sac tumor
                      AFP: 20 Oct 05: 3; 9 Dec 05: 4; 12 Jan 06: 6
                      CT scan: nodes adjacent left renal hilum, 6/7 mm (Sept 05)
                      Surveillance

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                      • #12
                        thanks for the articles.long term survival rate of 5 percent is what they told him,and i just read the same,cause he is heavily pretreated.very saddening indeed.there was some response in patients with absolutely refractory disease though,so ill focus on the WHAT IF.

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                        • #13
                          also im so sorry my messages have been a BUMMER to read lately.i just went back and read some of my most recent ones,looking at it from the outside in,and they are such a drag.so again,apologies.u guys are a great source of info for me,so i guess ill try to lighten up if i see its at all possible.

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                          • #14
                            thanks for sharing

                            I know it is hard to share this and to go through this. My prayers are with you both. All I can say is be there which you already are. Remember that there is a life after this one, it is not the end.

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                            • #15
                              Derek:
                              Please feel free to unload. Shareing your experiance will help others to not feel so alone. We all grow by learning form our collective experiances. Stay strong.
                              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.

                              Comment

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