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  • high dose stem cell

    I got on this forum this morning to see if anyone had anything to say about stemcell/high dose treatment...little did I know I would read about the lives of some amazing men and women.

    My husband and I just returned from IU yesterday. Jon was diagnosed with tc May 22, stage 3 nonseminoma mostly immature teratoma, seminoma and yolk sac. Had OI May 26, went through 3 rounds of EP, but markers have been moving up and down. AFP has gone from 244, 169, 184, 158, 153, 135, 141, 94, 135, 108. The HCG which was at 11 prior to the OI and had gone to normal is now back up to 55. Dr Einhorn suggests foregoing the last round of EP and go for the stemcell/high does. Jon also has enlarged lymph nodes through his belly, chest and neck so three surgeries are in his future. Dr. Einhorn believes two reasons for the lack of normalization of the markers - the cancer is resistent to the chemo he has been on or the immature teratoma is changing to a malignancy that is emitting the tumor markes. So the high dose is 50/50 and whether it is successful or not, surgeries will be the next step. So a long way to go before Jon can be "cured" but we are still clinging to the fact that this disease is curable.

    Reading the stories here are so very inspiring. If any one has advice, thoughts or encouragement - we'd love to hear it!

    Lori
    Lori and Jon
    Diagnosed 5/22/2006
    I/O 5/26/2006, Stage 3, Good
    Teratoma (Majority), Seminoma (10%), Yolk Sac
    3xEP then determined not working
    HDC w/stem cell transplant 8/16/06 to 9/25/06
    Chest and Neck surgery 10/9/06 - immature teratoma
    RPLND 11/16/06 - immature Teratoma
    2/29/2008 - markers continue to be normal!
    9/16/2008 - released from Dr. Einhorn's care

  • #2
    Hang in there, Lori, and best wishes for the journey ahead. We'll all be here.
    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
      Lori:
      I know the road may be tough but it looks like you have taken all the right steps. Keep up the good fight and take comfort from how many here have successfully traveled that some route. Remember we're with you every step of the way.
      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


      • #4
        Lori,

        First off, welcome to the forum! As far as my thoughts on your and Jon's situation, all I can say is "Wow!". You two certainly have a lot to go through and a tough fight ahead but you're definitely handling it the best way possible by having the best doctor in the world in your corner.

        I just finished 4 rounds of EP and luckily the chemo did it's thing and all my markers have normalized. Now I wait to see if any lymph nodes need to come out.

        Please tell Jon that there a lot of people on this site that are here for him in lots of ways. I know it's made my battle with Cancer a whole lot easier by posting my questions and concerns here and getting answers from people that have gone through the same thing.

        On a lighter note, I see you're from Vermont. I spend a lot of time in the winter up there on my snowmobile. In fact, I have probably ridden more miles of trails than I've driven on the roads. My wife and I are hoping to purchase some land up there in the next few years and build a cabin someday that we can retire to. If Jon is into sledding, have him drop me a line and we can chat about that to take his mind off of the more serious issues.

        Hang in there.

        Dave
        TC diagnosed 4/3/06, [email protected]; Left I/O 4/10/06; Stage IIa Non-Seminoma, 100% Yolk Sac; Started 4xEP 5/22/06 with [email protected]; Finshed 4xEP 8/11, AFP normal, CT scans clear! Now on surveillance

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        • #5
          I just finished the first of two stem cell transplants with high dose etoposide and carboplatin. I really didn't get sick from the chemo. I would say the hardest part is staying in the hosptial for 2.5+ weeks. I found out that my AFP which was 600+ before the transplant is now at 97.5, being only two weeks from when the chemo was finished. . . so that means that it could continue to decline over the next few weeks! I'm happy with the result so far. I would not fret over the transplant, its really not as bad as most people think.

          My situation was i was diagnosed with 95% embryonal 5% seminoma. Had 4 x EP and markers normalized. AFP went up to 22 about 6 weeks later and then in May found a tumor wrapped around my spinal cord causing numbness in my hands/legs and walking normal was becoming difficult. My pet scan showed very little cancer other than the spine which shrunk due to radiation prior to chemo. .hopefully the chemo got rid of the rest of it if any was left.

          My point is that just because markers normalized at first you have to keep a close watch on things for a while. And keep in mind that stem cell tranpslants do work! Take care
          Diagnosed August 2005
          R/O August 2005 AFP 210

          4xEP beginning December 2005
          End Feb/March 2006 AFP 4.6
          April 2006 AFP 22 and rising

          Tandem Stem Cell Transplant 7/06 - 9/06
          December 07 AFP = 3.3
          December 07 CT = Clear!

          15+ months remission

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          • #6
            Dave, glad to hear your doing well and thanksfor the well wishes. Sometime later would love to hear more about the "roads" you've traveled in VT.

            tccancercop - good news from you too. Glad to hear your first round is done! Where are you having treatment?
            Lori and Jon
            Diagnosed 5/22/2006
            I/O 5/26/2006, Stage 3, Good
            Teratoma (Majority), Seminoma (10%), Yolk Sac
            3xEP then determined not working
            HDC w/stem cell transplant 8/16/06 to 9/25/06
            Chest and Neck surgery 10/9/06 - immature teratoma
            RPLND 11/16/06 - immature Teratoma
            2/29/2008 - markers continue to be normal!
            9/16/2008 - released from Dr. Einhorn's care

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            • #7
              Jewish Hospital in Cincinnati
              Diagnosed August 2005
              R/O August 2005 AFP 210

              4xEP beginning December 2005
              End Feb/March 2006 AFP 4.6
              April 2006 AFP 22 and rising

              Tandem Stem Cell Transplant 7/06 - 9/06
              December 07 AFP = 3.3
              December 07 CT = Clear!

              15+ months remission

              Comment


              • #8
                Hi Lori.

                Hang in there during the high dose chemo/stem cell transplant. You are not alone on this site who has seen a loved one go through it. My husband went through that treatment in Indiana last year. The staff at Indiana are fantastic and he is in fantastic hands.

                Holler if you need ANYTHING!!! You have a very interesting and unique experience coming up.

                Patti
                Wife of Kevin Murphy
                Diagnosed 7/16/04 100% Choriocarcinoma
                Oriechtomy 7/20/04
                4xBEP 8/04-11/04 BHCG:1200 (lung only)
                Rediagnosed 12/27/04 BHCG: 50
                1xVIP 1/05 (lung)
                HDC/Stem cell Indiana 2/05-4/05 BHCG: 51-4.5 (lung)
                HDC failure 5/05
                3xGemzar/Taxol 6/05-9/05 (lung only)
                VP-16 w/Avastin 9/05-1/06 (lung only)
                Cyberknife 5" lung tumor 2/06
                cyberknife 6 brain tumors 3/06
                1xOxaliplatnin 3/06 (liver, lungs, kidneys, left hip)
                Passed away 4/13/2006

                Comment


                • #9
                  Lori,

                  You are doing a great thing by being your husband's patient advocate. Keep asking questions both here and to Dr. Einhorn. You are in great hands....as is your husband by having your support.

                  Keep us posted on how things develop. And do your best to stay positive...Jon will need that!
                  _____________________________________________

                  Left I/O 5/7/05, Stage 1(pT1)
                  No VI or LI, Normal Markers
                  70% Embryonal, 30% Seminoma
                  Surveillance
                  1st child born on 8/08

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                  • #10
                    Going through something very similar myself right now. Finished 4xBEP and my HCG, which normalized after the second cycle, rose to 65 the last day of my chemo. On the orders if Dr. Einhorn, I received a shot of testosterone, waited 10 days and checked my markers once more. Low and behold the HCG dropped to <0. But, that same blood test showed that my AFP had risen to 100. This was a few days ago and now, my onc is waiting to hear from Dr. Foster as to know whether to operate now or get more chemo. I’ve got a 10x12x18cm bad boy in my abdomen that could be releasing AFP from already dead tumor. Does your husband have a large tumor? Is it cystic? I’ve read some articles about tumors like this holding both HCG and AFP. The only advice I know is to listen to the guys in Indiana, where most if the writers of the articles I just mentioned practice.

                    Does anyone know how long one should have to wait before beginning a second line of chemo? It’s been 17 days since the last day of my chemo and I’m getting a bit nervous just sitting here waiting for my AFP to keep rising.

                    Comment


                    • #11
                      Stem cell high dose update

                      Hi everyone, thanks for the support! Jon and I are in Indy. We told the nurse we could pack up and leave at anytime and we wanted to start a week early. Luckily they said come on out so we traveled from VT out to Indy. Jon started the neuprogen shots on Friday, the Cathetier is placed tomorrow and the stem cell extraction on Tuesday. High dose on wed or thurs. We developed our own little motto - instead of asking why? we are saying "why not!" Wny not, Jon be cured! I'm scared about what is to come over the next two months, but man do I believe it is going to work.

                      Ryan1, keep us posted on your progress. All i can provide is feedback from our experience, but ask a lot of questions. If they say you still need chemo ask how quickly you can start. The nurses needed to see that jon's platelets were okay, but it does appear we may be finished with the 3 days of high dose a week before we had originally planned - simply because we asked.

                      Jon has a lot of teratoma and a lot of enlarged lymph nodes. Several in his chest, neck and stomach. So we know surgery is in the future. I just wish surgery was the option now rather than high dose. seems to me it would be better to take the tumors out - but Dr. Einhorn says no.

                      Will keep everyone posted - thanks again for the support. This forum helps keep me sane!
                      Lori and Jon
                      Diagnosed 5/22/2006
                      I/O 5/26/2006, Stage 3, Good
                      Teratoma (Majority), Seminoma (10%), Yolk Sac
                      3xEP then determined not working
                      HDC w/stem cell transplant 8/16/06 to 9/25/06
                      Chest and Neck surgery 10/9/06 - immature teratoma
                      RPLND 11/16/06 - immature Teratoma
                      2/29/2008 - markers continue to be normal!
                      9/16/2008 - released from Dr. Einhorn's care

                      Comment


                      • #12
                        Glad to hear from you, Lori. Your attitude is terrific! Keep us posted as much as time allows. We'll be thinking of Jon and you.
                        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


                        • #13
                          Lori:
                          Stay strong and stay positive. You guys are on track for a successful outcome and your attitudes are terrific.
                          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


                          • #14
                            Hi, thanks for your support. This forum is a good outlet for me. Jon's stem cell collection went great and we were able to start high dose today, a day early. Markers were taken today for the base line and the AFP was 85 down from 118 last week, but the HCG went from 16 to 101. Just always seems to be bad news with good news. I'm reading more and more about the tumors themselves giving off markers and Jon has a lot of tumors. Just seems crazy to me that they just don't do surgery first then chemo, but obviously Dr. Einhorn knows what he is doing. We know surgery will be the next step. We just need this high dose to normalize the markers. Keeping our thoughts positive and doing a lot of visualization and praying!

                            Hope the others who are going or about to go through high dose are doing great!
                            Lori and Jon
                            Diagnosed 5/22/2006
                            I/O 5/26/2006, Stage 3, Good
                            Teratoma (Majority), Seminoma (10%), Yolk Sac
                            3xEP then determined not working
                            HDC w/stem cell transplant 8/16/06 to 9/25/06
                            Chest and Neck surgery 10/9/06 - immature teratoma
                            RPLND 11/16/06 - immature Teratoma
                            2/29/2008 - markers continue to be normal!
                            9/16/2008 - released from Dr. Einhorn's care

                            Comment


                            • #15
                              If its any consolation. Your husband has a great chance of cure being that he was initally good risk and has low markers. His chance of cure with the high dose is near 50% or greater. The raise in HCG really doesnt change the prognosis. Below is an abstract of a presentation Dr. EInhorn gave at ASCO this year.

                              Abstract No: 4549
                              Citation: Journal of Clinical Oncology, 2006 ASCO Annual Meeting Proceedings Part I. Vol 24, No. 18S (June 20 Supplement), 2006: 4549
                              Author(s): L. H. Einhorn, S. Williams, R. Abonour
                              Abstract: Background: We began studies with HDCE for patients (pts.) with recurrent GCTs 20 years ago. During the past decade, better supportive care and use of PBSCT allowed outpatient therapy and more rapid hematopoietic recovery between the 2 courses of HDCE. Methods: Retrospective review of 184 consecutive pts. treated with HDCE at Indiana University from 2-96 to 12-04. Late relapse (> 2 years from prior therapy) and primary mediastinal non-seminomatous germ cell tumor pts. were not offered HDCE. Cytoreduction with 0-2 courses of vinblastine + ifosfamide + cisplatin preceded HDCE. C dosage was 700 mg/M2 × 3 and E 750 mg/M2 × 3. A second course was given after hematologic recovery. Results: Toxicity was as previously described (JCO 18:3346, 2000). There were 3 drug- related mortalities. An additional 3 patients developed AML (2 fatal), and 1 glioma following CNS XRT for metastases. 11 pts. did not receive second course (8 due to progression or HDCE mortality). Median time to second course HDCE was 28 days (range 20 to 42). 116 of 184 pts. are alive and continuously (cont) NED (63%) with median followup 42 months (range 11 to 118). 113 (97%) of these are 12+ months NED. 5 additional pts. are currently NED with further therapy. Results are tabulated below. Conclusions: HDCE has a high cure rate with acceptable toxicity as salvage therapy for GCT pts.

                              No. pts. No. cont. NED (%)
                              Entire series 184 116 (63%)
                              Second-line therapy 136 92 (68%)
                              Third-line or later 48 23 (48%)
                              hCG > 1,000* 20 12 (60%)
                              AFP > 1,000* 7 2 (28.6%)
                              Platinum refractory+ 30 15 (50%)

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