HDC with stem cell! Please share experience

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  • Lovemyman
    Registered User
    • Apr 2011
    • 96

    HDC with stem cell! Please share experience

    We found out today the the RPLND is cancelled for now because AFP is 1800 and rising. We met with Sheinfeld today and he sent us to see Dr. Feldman. Dr. Feldman is the HDC oncologist at MSK. He was awesome! Since the AFP is rising they want to do the HDC now because of the high risk of a nephrectomy during RPLND. 2 kidneys are better than one if you need HDC. If you only have one kidney you may not be a candidate fir HDC. The Dr. Was very good at explaining his plan of care but the advice on the forum is both comforting and informative. Please respond if you have any experience you can share. Thank you
    Liz
    Left Orchiectomy 6/10, pathology MGC with EC/teratoma mostly yolk sac. AFP >700 HCG >500 4 cycles EP July-Oct. AFP and HGC normal. Jan/11 AFP >1000. 4 cycles of TIP planned stopped after 3 for elevated AFP 3000. Stem cells harvested 8/22-8/25/11. AFP over 8000. HDC 10/17/11 -12/20/11. RPLND 1/16/12. Pathology MGC tumor mostly yolk sac. 45 lymph nodes negative.AFP 2.1 4/12/12. AFP22 6/12 new lesions in liver and abdomen. Gem/Ox start 7/2.
  • Aegean
    Administrator
    • Nov 2008
    • 3163

    #2
    Hi Liz,

    This thread currently going on has some of your answers.

    Sorry, I do not have much HDC experience, only what my good friend John(TC Destroyer) tells me. Either way, positive thoughts your way.
    Best,

    Zsolt


    Friendship is born at that moment when one person says to another; "What! You too? I thought I was the only one." - C.S Lewis

    “Experience: that most brutal of teachers. But you learn, my God do you learn.” - C.S. Lewis


    Mass found 11/20/08
    Left I/O 11/25/08
    Pathology: Seminoma, Stage 1
    Surveillance: All Clear since

    Comment

    • TC Destroyer
      Administrator
      • Apr 2009
      • 968

      #3
      Hello Liz,

      Please feel free to ask any questions you may have.

      Do you know which HDC protocol you will undergo? knowing this will better help us to answer your questions.
      Diagnosed 4/17/08
      Right orchiectomy 4/18/08
      Pure choriocarcinoma; HCG 715,000; lungs, lymphnodes, liver, and random other places
      4X VIP chemo at IU with Dr. Einhorn 4/25/08-7/4/08
      HCG down to 7.2 10/28/08
      HCG back up to 198 12/29/08
      1 X PVB 1/2/09-1/6/09
      2 X HDC w/ stem cell rescue 2/4/09-3/14/09
      Follow-up with Dr. Einhorn 4/22/09
      HCG 1.2
      3 rounds, 21 days, twice daily, VP-16 50mg 4/24/09-7/10/09

      http://www.caringbridge.org/visit/johncovell

      Comment

      • TC Destroyer
        Administrator
        • Apr 2009
        • 968

        #4
        Not to be redundent, but I will repost the protocol I underwent @ IU.

        HDC is High Dose Chemo therapy There are two big ones right now I will focus on the one I underwent @ IU. HDC is Etoposide and Carboplatin (penetrates the blood brain barrier) @ 5X the typical dosage.

        The order of treament is as follows:
        Stem cell collection--
        4-5 Days of Nuepogen
        Stem cell collection for 1 -2 days

        Begin chemo:3 days (days -5, -4, -3)(20 hours inbetween treatments)
        Etoposide 1500mg (75mL) infuse at a rate of 37.5mL/hr (2 hours)
        Carboplatin 1400mg (250mL) infuse at a rate of 700mL/hr (30minutes)

        2 days of rest (days -2, -1)

        Begin recovery: (day 0)
        1/2 of stem cells collected given back via a syringe push

        Recover and monitor blood counts daily (days 1-14)

        Leave Hospital for 7 -10 days after blood levels rise

        Repeat from Chemo step.

        HDC completely wipes out your bone marrow that is why the stem cell rescue is needed. Please ask any Q's you may have I will do my best to answer them,
        Diagnosed 4/17/08
        Right orchiectomy 4/18/08
        Pure choriocarcinoma; HCG 715,000; lungs, lymphnodes, liver, and random other places
        4X VIP chemo at IU with Dr. Einhorn 4/25/08-7/4/08
        HCG down to 7.2 10/28/08
        HCG back up to 198 12/29/08
        1 X PVB 1/2/09-1/6/09
        2 X HDC w/ stem cell rescue 2/4/09-3/14/09
        Follow-up with Dr. Einhorn 4/22/09
        HCG 1.2
        3 rounds, 21 days, twice daily, VP-16 50mg 4/24/09-7/10/09

        http://www.caringbridge.org/visit/johncovell

        Comment

        • Lovemyman
          Registered User
          • Apr 2011
          • 96

          #5
          Thank you for that information. Sounds like PJ will gave the same treat me t that you did. It is called TICE.
          Left Orchiectomy 6/10, pathology MGC with EC/teratoma mostly yolk sac. AFP >700 HCG >500 4 cycles EP July-Oct. AFP and HGC normal. Jan/11 AFP >1000. 4 cycles of TIP planned stopped after 3 for elevated AFP 3000. Stem cells harvested 8/22-8/25/11. AFP over 8000. HDC 10/17/11 -12/20/11. RPLND 1/16/12. Pathology MGC tumor mostly yolk sac. 45 lymph nodes negative.AFP 2.1 4/12/12. AFP22 6/12 new lesions in liver and abdomen. Gem/Ox start 7/2.

          Comment

          • Lovemyman
            Registered User
            • Apr 2011
            • 96

            #6
            Thank you for that information. Sounds like PJ will gave the same treat me t that you did. It is called TICE.
            Left Orchiectomy 6/10, pathology MGC with EC/teratoma mostly yolk sac. AFP >700 HCG >500 4 cycles EP July-Oct. AFP and HGC normal. Jan/11 AFP >1000. 4 cycles of TIP planned stopped after 3 for elevated AFP 3000. Stem cells harvested 8/22-8/25/11. AFP over 8000. HDC 10/17/11 -12/20/11. RPLND 1/16/12. Pathology MGC tumor mostly yolk sac. 45 lymph nodes negative.AFP 2.1 4/12/12. AFP22 6/12 new lesions in liver and abdomen. Gem/Ox start 7/2.

            Comment

            • Lovemyman
              Registered User
              • Apr 2011
              • 96

              #7
              Originally posted by TC Destroyer View Post
              Not to be redundent, but I will repost the protocol I underwent @ IU.
              Did you have chemo prior to stem cell extraction? If so can you tell me how many days you were hospitalized for that? They said PJ will have TI for 3 days, then he will need the neupogen. What is the time frame for this? Can he go home after the three days and get the neupogen at home?
              Left Orchiectomy 6/10, pathology MGC with EC/teratoma mostly yolk sac. AFP >700 HCG >500 4 cycles EP July-Oct. AFP and HGC normal. Jan/11 AFP >1000. 4 cycles of TIP planned stopped after 3 for elevated AFP 3000. Stem cells harvested 8/22-8/25/11. AFP over 8000. HDC 10/17/11 -12/20/11. RPLND 1/16/12. Pathology MGC tumor mostly yolk sac. 45 lymph nodes negative.AFP 2.1 4/12/12. AFP22 6/12 new lesions in liver and abdomen. Gem/Ox start 7/2.

              Comment

              • ryder
                Registered User
                • Nov 2008
                • 182

                #8
                Hello Lovemyman

                My husband had ICE which may be similar to your husbands TICE prior to his collection, unfortunetly while on ICE his tumour markers still rose so we went on to TIP which he had in conjunction with the nuprogeon shots prior to the collection of the stem cells. We did this for three rounds total, two rounds did not produce enough stem cells. Then off to the HDC. During the collection we had to stay in the hosptial for the first 2 rounds becasue he was had got pretty sick when the cancer had spread during the ICE protocol but then the third cycle we did as an outpatient, he gave himself shots of neuprogen at our apartment, we could not go home home, had to remain in the city during this time to have his blood tested daily so there was no chance of missing a GOOD collection day, but didn't have to remain at the hospital..

                I am sure TCDestroyer can fill in any blanks I Have left. Best wishes!
                Last edited by ryder; 07-15-11, 01:15 PM.
                Dawn Ann (Ryder)
                Caregiver
                Husband diagnosed Oct 2008 Pure choriocarcinoma., HCG 425000, 4xBEP, Left orchiectomy, marker did not normalize, 1xICE, Found 3 Tumours in Brain and more in Lungs and spinal area, radiation on brain and back, 2xTIP, 2 rounds HDC with Stemcell transplant, markers still did not normalize, lost the love of my life, my best friend and soul mate on September 23, 2009.

                Comment

                • Jay68442
                  Registered User
                  • Jul 2007
                  • 1648

                  #9
                  I did HDC with stem cell over 20 years ago and I'm still going strong. I can't add much because things have changed quite a bit since I had it done. I just wanted to let you know that it isn't so bad and a wonderful life lies ahead.

                  LiveSTRONG,
                  Jason
                  If you look for the truth outside yourself, it gets farther and farther away. ~ Tung-Shan
                  If you love life, don't waste time, for time is what life is made up of. ~ Bruce Lee
                  Please sponsor me for the 2011 LiveSTRONG Challenge Philadelphia.
                  My Blog

                  Diagonosed 1988. Left I/O - 3 rounds of chemo
                  Relasped 1989. RPLND - 3 rounds HDC - Bone Marrow transplant.
                  There is Army Strong, There is Live Strong and then there is me. Crazy Strong

                  Comment

                  • Lovemyman
                    Registered User
                    • Apr 2011
                    • 96

                    #10
                    Thank you Jason you have a remarkable story. It helps to know that PJ still has a fighting chance.
                    Liz
                    Left Orchiectomy 6/10, pathology MGC with EC/teratoma mostly yolk sac. AFP >700 HCG >500 4 cycles EP July-Oct. AFP and HGC normal. Jan/11 AFP >1000. 4 cycles of TIP planned stopped after 3 for elevated AFP 3000. Stem cells harvested 8/22-8/25/11. AFP over 8000. HDC 10/17/11 -12/20/11. RPLND 1/16/12. Pathology MGC tumor mostly yolk sac. 45 lymph nodes negative.AFP 2.1 4/12/12. AFP22 6/12 new lesions in liver and abdomen. Gem/Ox start 7/2.

                    Comment

                    • TC Destroyer
                      Administrator
                      • Apr 2009
                      • 968

                      #11
                      I did recieve one round of chemo as soon as I could, about 5 days after a rise in markers was noticed. I recieved one round of BEP (5 days with one bleo push). This was mainly meant to slow the progression of the then growing tumor. Dr. E. said I could get 4X BEP, but chorio would eventually just come back.

                      TICE is not the same as IU's protocol. I am not as versed in it's protocol or success rate.

                      Maybe someone else who has undergone this therapy with success can weigh in.

                      John
                      Diagnosed 4/17/08
                      Right orchiectomy 4/18/08
                      Pure choriocarcinoma; HCG 715,000; lungs, lymphnodes, liver, and random other places
                      4X VIP chemo at IU with Dr. Einhorn 4/25/08-7/4/08
                      HCG down to 7.2 10/28/08
                      HCG back up to 198 12/29/08
                      1 X PVB 1/2/09-1/6/09
                      2 X HDC w/ stem cell rescue 2/4/09-3/14/09
                      Follow-up with Dr. Einhorn 4/22/09
                      HCG 1.2
                      3 rounds, 21 days, twice daily, VP-16 50mg 4/24/09-7/10/09

                      http://www.caringbridge.org/visit/johncovell

                      Comment

                      • Lovemyman
                        Registered User
                        • Apr 2011
                        • 96

                        #12
                        Thank you John. I think the differences are that PJ will get Taxol and Ifosfamide prior to stem cell collection not BEP. Otherwise it sounds very similar. Am I correct in reading that you had to get a daily blood test during stem cell collection? What was your average time frame during each HDC session that you were in the hospital? Were they able to control the nausea and vomiting? How did you feel after the stem cells were given back to you? Did it make you feel better? Sorry for all the questions but I like to be prepared for him and me. Thanks, any information would be appreciated.
                        Liz
                        Left Orchiectomy 6/10, pathology MGC with EC/teratoma mostly yolk sac. AFP >700 HCG >500 4 cycles EP July-Oct. AFP and HGC normal. Jan/11 AFP >1000. 4 cycles of TIP planned stopped after 3 for elevated AFP 3000. Stem cells harvested 8/22-8/25/11. AFP over 8000. HDC 10/17/11 -12/20/11. RPLND 1/16/12. Pathology MGC tumor mostly yolk sac. 45 lymph nodes negative.AFP 2.1 4/12/12. AFP22 6/12 new lesions in liver and abdomen. Gem/Ox start 7/2.

                        Comment

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