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  • Moving straight from BEP to High dose TI-CE

    Hi everyone,

    A little background - im a 35 year old irish guy living in bangkok. I've been 'lucky' enough to pick up an unusual variety of TC.
    Here's my story so far:

    On May 15 2013 - i woke up coughing up blood - went to the hospital that morning and immediately got the news of what looked like secondary tumours in my lungs. This was pretty surprising as i've always been fit and run 4-8 kilometers a day with my dog.


    So we a a busy morning of CT scans and they found the following:
    I had multiple tumours in both lungs - the largest mass being 2.5cm*4.7cm.
    I had lesions in liver 0.3cm to 1.3cm in both hepatic lobes.
    Ill defined mass in right testis 3.5*3.6*4.3cm
    Matted heterogenous enhancing retroperitoneal nodes 4.9*7.9*11.5cm.

    By lunchtime they had good off righty...
    My HCG came in at 360,000 so we started chemo (BEP) the next day (16 May).

    I was diagnosed with Stage III C pure choriocarcinoma testicular cancer with metastatis to lymphs, lungs and liver (basically a germ cell tumour).
    The first few weeks were pretty tough and i dropped about 10 kg (from 82kg to 72kg)

    6/14 HCG dropped to 7,438 and lungs showed signs of reductions of tumours. I had already gained by 6kg. I've been genuinely lucky that the BEP doesnt seem to take too much out of me (apart from annoying amounts of hiccups!) so we performed this round as outpatient. Everyday i get out for a walk with the dog for an hour.
    I did day 1 to 5 of BEP but day 8 and 15 we skipped as the doctors wanted to do stem cell harvest - luckily we got 3 bags of 22m per KG of body weight.

    7/16 they performed CT scans and all the tumours were showing sign of reductions.
    My HCG continued dropping to 6,486 and in general the chemo seemed to be going well (and i was lucky enough to get pretty limited side effect - just more hiccups!).
    We had a file review performed by Sloan Kettering who recommended continuing on the BEP for a fourth round unless the markers started to rise.

    7/30 my HCG continued falling to 1827 - my weight continued to increase to 78kg.

    8/13 we reperformed the bloods and the bad news came in that the HGC increased to 3437.
    CT scans shows the lymph tumours were stable and the lungs continued to improve.

    The decision was made to move to High Dose chemo following the sloan kettering protocol - 2 rounds of TI (every 2 weeks) and then 3 rounds of TICE (every 2-3 weeks). This is new territory over here

    So we started TI that day - it went well but what i wasnt aware of the local doctor reduced the amount of taxol by 30% and ifosfamide by 50% as i was just coming off BEP. He made this decision without consulting the doctor at Sloan (nor informing me) so thats a bit of a worry (i only found that out august 26)

    8/22 No noticeable side effects from the TI (now i know i was on reduced dosage thats presumably why i felt so good).
    HGC continued to increase to 4797. Weight back to 80kg - i now have a huge belly

    8/27 HGC dropping again to 2251.
    Starting round 2 of the TI cycle today (this time on the full doses)

    Sorry to start off with such a long list but thats where we are.

    I'm going to try to organise a call with the consultant at Sloan Kettering to see the impact of the reduced
    first round of TI - anyone with any experience of that i'd love to hear about it.

    The plan is to go to the high dose of CE in 2 weeks. This involves 2-3 weeks in hospital each cycle (im due for 3) so im not looking forward to that too much.

    After that presumably i'll need to go for RPLND - im thinking of flying to Sloan Kettering for that - the 24 hours of flight time wont be fun but better to get it done at a center of excellence. I'm not sure at what point they might stop the high dose chemo and just move straight to surgery so if anyone has any experience of that too i'd love to hear it.

    thanks

    peter
    05/15 diagnosed stage III C choriocarcinoma - lost righty
    05/16 started BEP round 1 - HCG 360000
    06/14 started BEP round 2 - HCG 7438
    06/28 stem cells harvested
    07/16 BEP round 3 - HCG 6486
    07/30 HCG 1847
    08/13 - HGC 3437 - moved to high dose chemo. round 1 TI
    08/22 - HGC 4797
    08/27 - HCG 2251 - round 2 TI
    09/06 HCG 857
    09/10 HCG 279 - round 1 high dose CE

  • #2
    Peter, I have no advice for you. But I will include you in my prayers because you are going through a lot right now!

    Jim
    March 2012 - I/O Right Testicle (pure Seminoma)
    April 2012 - July 2013 surveillance
    July 12, 2013 LDH 365, Node is in abdomen size = 2.7cm. (treatment needed)
    August 5, 2013 beginning 3xBEP

    http://www.caringbridge.org/visit/jimmiller71

    Comment


    • #3
      My husband was diagnosed with stage IIIC pure chorio last March. It has not been easy, but he has had normal hCG since Sept. 26, 2012. He also did high dose stem cell transplant, but Cedars-Sinai hospital follows a different protocol, Indiana's. Positive thoughts always helped my husband with his treatment. Positive thoughts your way.
      3/2/12 sciatic pain, ER visit-multiple lung mets, admitted. Multiple lung mets, RP masses 4.6x5.8 & 7.8x8.4, spleen 4.6, liver 2.5, 4 brain lesions (3 Cyberknife 3/8/12 DX pure Chorio with RP bx. 3/9/12 started BEPx4. HCG pre-chemo 330,000-after 3/15 759,672 -3/21 272,206 -3/28 46,486 -4/5 11,326 -4/18 2423- 5/4 871 -5/23 176 -5/30 105 -6/6 97 -6/27 29 -7/6 16 -7/1 20 -7/18 129 -7/25 3122, -8/4 1105, -8/10 122, -8/15 37, -8/22 7, 8/30 3!! -9/5 8.4 start of HDC -9/26 <2, 10/3 <2, 10/4 2nd HDC

      Comment


      • #4
        Sounds rough, man, but you will pull through and beat the beast. It sounds like you're a tough dude. Keep that HCG dropping and keep us updated.

        Did you not feel any testicular pain or have a primary tumor down there?
        6/28/13 - Diagnosed with TC
        7/02/13 - Left I/O
        Pre-I/O - AFP 232 | b-Hcg 276
        7/09/13 - CT scan CLEAN - negative for mets/lymph node enlargement
        7/28/13 - AFP 7 | b-Hcg <2
        7/30/13 - Pathology Result : pT1 NSGCT (15% EC , 10% Yolk Sac , 75% Immature Teratoma) no LVI/Epididymis/S.Cord involvement
        7/30/13 - Surveillance - Next CT + Blood in October 2013
        10/22/13 - AFP/HCG normal | CT Scan normal | 3-months all clear
        --Next Check-Up in February--

        Comment


        • #5
          Thanks all for the best wishes everyone.

          Actually I had pain in the testical since December (my dog ran over me so I just treated it as a big kick). After a few weeks I went for an ultrasound which didn't look good but they thought maybe an infection of a bruise. Towards mid jan they did an MRI with contrast and immediately came back with 'its just a big abscess'. It was too dangerous to biopsy due to the size of the abscess.

          Treatment advice was 'leave it alone' after about 6 weeks of antibiotics. It was still sore but the surgeon didn't recommend to operate as abscess's are tough to heal.

          In early may I went back in as the pain increased again and a semen culture showed an infection which I got antibiotics for. The week after I was coughing blood so then we moved to the kcancer diagnosis.

          A funny side effect of the choriocarcinoma is it seems to 'burn out' the primary site. The surgeon that removed it said it was about 90 abscess with 10 percent normal flesh around it. That's why it didn't show up as a tumour with a blood vessel of its own.

          Did day 1 of round 2 of TI today (just 400mg of taxol). No side effects yet which is nice (I drank 5 liters of water during the chemo which I think really helps (I just pretend its cider and I'm drinking pints (the irish in me then allows me to consume as much liquid as possible )
          05/15 diagnosed stage III C choriocarcinoma - lost righty
          05/16 started BEP round 1 - HCG 360000
          06/14 started BEP round 2 - HCG 7438
          06/28 stem cells harvested
          07/16 BEP round 3 - HCG 6486
          07/30 HCG 1847
          08/13 - HGC 3437 - moved to high dose chemo. round 1 TI
          08/22 - HGC 4797
          08/27 - HCG 2251 - round 2 TI
          09/06 HCG 857
          09/10 HCG 279 - round 1 high dose CE

          Comment


          • #6
            Thanks mikes wife, sounds like your husband and I have a very similar path, I hope to follow his all the way to remission. Appreciate you sharing

            Originally posted by Mike'swife View Post
            My husband was diagnosed with stage IIIC pure chorio last March. It has not been easy, but he has had normal hCG since Sept. 26, 2012. He also did high dose stem cell transplant, but Cedars-Sinai hospital follows a different protocol, Indiana's. Positive thoughts always helped my husband with his treatment. Positive thoughts your way.
            05/15 diagnosed stage III C choriocarcinoma - lost righty
            05/16 started BEP round 1 - HCG 360000
            06/14 started BEP round 2 - HCG 7438
            06/28 stem cells harvested
            07/16 BEP round 3 - HCG 6486
            07/30 HCG 1847
            08/13 - HGC 3437 - moved to high dose chemo. round 1 TI
            08/22 - HGC 4797
            08/27 - HCG 2251 - round 2 TI
            09/06 HCG 857
            09/10 HCG 279 - round 1 high dose CE

            Comment


            • #7
              Welcome to the Forums

              Hello, I'm another Pure Chorio treated at IU.

              You and I have the same story basically, I was miss diagnosed with an infection as well then eventually cancer.

              Dr. Einhorn is the foremost expert for TC, especially Pure chorio.

              My advice would be to have your medical team consult with Dr. Einhorn, normally he is very willing as he is passionate about educating the medical community of the best practices for complete remission.

              My concern with the protocol you are on is the dosage. Do you know how much Carboplatin and Etoposide you will be getting?

              Please feel free to ask any Q's.

              John
              Last edited by TC Destroyer; 08-27-13, 11:13 PM.
              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


              • #8
                Here is the protocol and dosage I underwent @ IU.
                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


                • #9
                  Hey john,

                  You are a great example of getting to the other side of this so thanks for the note.

                  We consulted with doctor Feldman at Sloan Kettering and also one of the top guys back in Ireland (John McCaffrey)

                  Because my hgc rose up after my third round of BEP the guy at sloan recommended go straight to high dose.

                  First 2 rounds are TI

                  Pacitaxil at 200mg/ m2 for day 1
                  Day 2 to 4 then ifosamine at 2000mg / m2


                  Of course the Thai doctor decided to half that dose for round one as he was afraid I was just coming off BEP? Unfortunately he didn't consult the 2 guys at got him (a little Asian face saving I fear) so yesterday we had a strong 'discussion' on that and this round I'm on the full dose. That's a little of the amazing thailand experience - things get changed without permission so now I'm asking the nurses prior to the I ejections going in.

                  We'll have a call with the irish guy this week i hope to see if this means I need a third round of this as the first could have been a waste of time

                  For rounds 3-5 we'll be going with
                  Carboplatin dosed to auc 8 (I've no clue what this means) for day 1 to 3
                  Etoposide 200mg/m2 for 3 days
                  Day 5 will be stem cell replacement - I'm lucky and have 22m per kg so hopefully I'll bounce back pretty fast.

                  I'm 2m2 by the way so the doses are pretty high but I guess that the whole point.

                  I'll take your advice and contact doctor Eindhorn thanks, more opinions are always welcome. Hopefully we can get the tu ours small enough to operate and at that point I'll be hitting the states anyway for the rplnd operation (not done with any regularity here so better to get to the experts)

                  Day 2 of this cycle now, the paxitacil doesn't seem to have any bad effects yet (apart from making me strangely hungry) so long may that continue.

                  Thanks again

                  Pete





                  05/15 diagnosed stage III C choriocarcinoma - lost righty
                  05/16 started BEP round 1 - HCG 360000
                  06/14 started BEP round 2 - HCG 7438
                  06/28 stem cells harvested
                  07/16 BEP round 3 - HCG 6486
                  07/30 HCG 1847
                  08/13 - HGC 3437 - moved to high dose chemo. round 1 TI
                  08/22 - HGC 4797
                  08/27 - HCG 2251 - round 2 TI
                  09/06 HCG 857
                  09/10 HCG 279 - round 1 high dose CE

                  Comment


                  • #10
                    Originally posted by PeterC View Post
                    First 2 rounds are TI

                    Pacitaxil at 200mg/ m2 for day 1
                    Day 2 to 4 then ifosamine at 2000mg / m2


                    Of course the Thai doctor decided to half that dose for round one as he was afraid I was just coming off BEP? Unfortunately he didn't consult the 2 guys at got him (a little Asian face saving I fear) so yesterday we had a strong 'discussion' on that and this round I'm on the full dose. That's a little of the amazing thailand experience - things get changed without permission so now I'm asking the nurses prior to the I ejections going in.

                    We'll have a call with the irish guy this week i hope to see if this means I need a third round of this as the first could have been a waste of time

                    For rounds 3-5 we'll be going with
                    Carboplatin dosed to auc 8 (I've no clue what this means) for day 1 to 3
                    Etoposide 200mg/m2 for 3 days
                    Day 5 will be stem cell replacement - I'm lucky and have 22m per kg so hopefully I'll bounce back pretty fast.
                    Those doses seem pretty low, I don't know the conversion for 200mg/m2 to mg/mL Tracy any chance you could wave your genius wand for us? I tried googling it and nothing simple came up.

                    Carboplatin and Etoposide are the important drugs as those are the ones shown to work on Chorio. My fear is since your tumors are already showing resistance, giving to low of a dose will only increase there resistance further.


                    I'm 2m2 by the way so the doses are pretty high but I guess that the whole point.
                    Could you explain what 2m2 means? Chemo needs to be given at extremely high concentrations quickly (I received each dose of Etoposide in 30 min) in order to overcome the resistive nature of the cancer cells.

                    I'll take your advice and contact doctor Eindhorn thanks, more opinions are always welcome. Hopefully we can get the tu ours small enough to operate and at that point I'll be hitting the states anyway for the rplnd operation (not done with any regularity here so better to get to the experts)
                    RPLND is not the correct course of treatment for Chorio, Choriocarcinoma spread through the blood very easily and because of this, surgery in general brings great risk of causing more damage. Please get your physician in contact with Dr. Einhorn.



                    Please feel free to ask any Q's you might have.

                    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


                    • #11
                      Originally posted by TC Destroyer View Post
                      Could you explain what 2m2 means? Chemo needs to be given at extremely high concentrations quickly (I received each dose of Etoposide in 30 min) in order to overcome the resistive nature of the cancer cells.
                      In European terms i'm pretty sure it means he's 2 meters and 2cm tall.. so basically he's a giant, about 6'6". I'm Hungarian myself and that's how we measure it over there too so it's my best guess but i could be wrong.

                      I agree completely with you TC Destroyer. Peter you need to make sure you are getting the correct dosages before having them proceed - as difficult as it sounds. It's vital that you don't let the Chorio build resistance to the drugs
                      6/28/13 - Diagnosed with TC
                      7/02/13 - Left I/O
                      Pre-I/O - AFP 232 | b-Hcg 276
                      7/09/13 - CT scan CLEAN - negative for mets/lymph node enlargement
                      7/28/13 - AFP 7 | b-Hcg <2
                      7/30/13 - Pathology Result : pT1 NSGCT (15% EC , 10% Yolk Sac , 75% Immature Teratoma) no LVI/Epididymis/S.Cord involvement
                      7/30/13 - Surveillance - Next CT + Blood in October 2013
                      10/22/13 - AFP/HCG normal | CT Scan normal | 3-months all clear
                      --Next Check-Up in February--

                      Comment


                      • #12
                        hey guys,

                        thanks for the responses.

                        im 2 meter squared of surface area (182cm*79.7kg). so basically double the numbers for the meds. These numbers are coming from the Doctor at Sloan Kettering but you are right - i'll get onto Doctor Eindhorn as soon as i get the updated numbers from my scans (the last report in the CT scans was 'lite' on numerical comparisons to the last report so i have complained to them and asked for a real report. here is what i was on and the timing:

                        13-Aug-13 4 Anzatax 300mg + NIS 500 ML IV 3 Hr Day 1
                        4 Ifosfamide 2.2gm + NSS 500 ML IV 2 Hr Day 1 to day 3
                        4 Mesna 500mg + NSS 100 Ml IV 15 mins after start Ifosfamide at H4 4, Hr 8, Hr 12 Day 1 to day 3

                        27-Aug-13 5 Anzatax 400mg + NIS 500 ML IV 4 Hr Day 1
                        5 Ifosfamide 4gm + NSS 500 ML IV 4 Hr Day 2 to day 4
                        5 Mesna 1.2g every 4 hours on hour 0,4,8 Day 2 to day 4

                        I guess that if count by mg per ml it would be the following:
                        Round 1 TI:
                        Anzatax: 0.6mg per ML for a total of 500ml over 3 hours on day 1
                        Ifosfamide: 4.4mg per ml for a total of 500ml over 2 hours on day 1-3

                        For round 2 we increased the dosage to that which my doctor was told to use..:
                        Anzatax: 0.8mg per ML for a total of 500ml over 4 hours on day 1
                        Ifosfamide: 8mg per ml for a total of 500ml over 4 hours on day 1-3

                        The doctors here think the doses they are giving are huge (hence why he reduced them without telling me the first round - all medications in future will be discussed with me and checked). i have 2 weeks before we start anyway so have a little time to get proper details to doctor eindhorn and back to the guy at sloan.

                        With regards to surgery oddly the doctor at Sloan Kettering recommended lung and lymph surgery as soon as the markers are down (Sloan kettering seem to have a position that they always like surgery and think it makes a big difference in terms of chance of avoiding a repeat experience) - again i'll ask Dr Eindhorn.

                        thanks again for all the help
                        05/15 diagnosed stage III C choriocarcinoma - lost righty
                        05/16 started BEP round 1 - HCG 360000
                        06/14 started BEP round 2 - HCG 7438
                        06/28 stem cells harvested
                        07/16 BEP round 3 - HCG 6486
                        07/30 HCG 1847
                        08/13 - HGC 3437 - moved to high dose chemo. round 1 TI
                        08/22 - HGC 4797
                        08/27 - HCG 2251 - round 2 TI
                        09/06 HCG 857
                        09/10 HCG 279 - round 1 high dose CE

                        Comment


                        • #13
                          sorry it took me a while to track down the study from sloan kettering that they say they are practising now

                          http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3651604/

                          the dosages are in Appendix A1.
                          05/15 diagnosed stage III C choriocarcinoma - lost righty
                          05/16 started BEP round 1 - HCG 360000
                          06/14 started BEP round 2 - HCG 7438
                          06/28 stem cells harvested
                          07/16 BEP round 3 - HCG 6486
                          07/30 HCG 1847
                          08/13 - HGC 3437 - moved to high dose chemo. round 1 TI
                          08/22 - HGC 4797
                          08/27 - HCG 2251 - round 2 TI
                          09/06 HCG 857
                          09/10 HCG 279 - round 1 high dose CE

                          Comment


                          • #14
                            So I finished round 2 of the TI portion of the treatment yesterday. Pretty limited side effects so far (apart from a day of diarrhea today) so that's good. I'm trying out psyllium husks today to see will that help the diarrhea. Also giving cold pressed black sesame oil (3 spoons a day) to see will that boost my platelets in advance of the CE portionin 10 days. Will let everyone know if it works. Cancer markers next Friday so a bit of an off week from the hospital which is nice.
                            05/15 diagnosed stage III C choriocarcinoma - lost righty
                            05/16 started BEP round 1 - HCG 360000
                            06/14 started BEP round 2 - HCG 7438
                            06/28 stem cells harvested
                            07/16 BEP round 3 - HCG 6486
                            07/30 HCG 1847
                            08/13 - HGC 3437 - moved to high dose chemo. round 1 TI
                            08/22 - HGC 4797
                            08/27 - HCG 2251 - round 2 TI
                            09/06 HCG 857
                            09/10 HCG 279 - round 1 high dose CE

                            Comment


                            • #15
                              For dosing, here is what NCCN guidelines say for the "CE":

                              Carboplatin 700 mg/m2 (Body Surface Area)
                              Etoposide 750 mg/m2
                              administered 5, 4, and 3 days before stem cell transplant

                              This is done 2x

                              The MSKCC paper says that they use:
                              Etoposide 400 mg/m2 daily on days 1 through 3 for all patients
                              Carboplatin was AUC of 24 mg/mL/min over 3 days (hence the AUC of 8 per day)

                              This is done 3x

                              So the question is - are they planning on 2 or 3 cycles? That impacts dosing. IU does 2 rounds, MSKCC does 3.
                              Tracy
                              Cancer pharmacologist, caregiver blog here

                              Wife to Kel, dx 12/30/11 Stage IIIc (poor) embyronal, AFP 13700, 10x11 cm retroperitoneal mass, 1 cm^2 lung met
                              Left I/O 12/31/10.
                              4xBEP 1-4/11, AFP=22, 5*7 RP mass, tx failed
                              1.5 x VeIP 5-6/11; tx failed, AFP/b-hCG rising
                              Salvage RPLND @Indy 6/29/11, metastatic mixed germ cell tumor with yolk sac, seminoma and teratoma
                              Remission! AFP steady since 9/2011; 2+ years ALL CLEAR

                              Comment

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