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  • My long journey of TC

    While i'm a new member, i've been reading this forum for a while and thought i'd share my journey of TC with everyone as it's not a normal one! Sorry for the long read!

    I was diagnosed on March 17 / 2006, I was 23 years old, (Cruel ironic fate of it being St. Patrick's Day) when I had a DVT (Occured on a flight back from South America) and a Pulmonary Embolism in my left lung (blood clot). 1 month before this i was climbing at high altitude in the Andes of South America (6000 meters +), the doctors cant believe that I had no symptoms during this! The only positive thing was that I had nothing on the go at the time, I had just finished my Masters degree in Geography.

    Upon getting to the hospital, I was first diagnosed by an over zealous ER doctor to have TB when they did an x-ray of my lungs and a CT, a little while later the head urologist showed up and diagnosed me with Stage IIIA TC. The cancer essentially was everywhere below my neck line, and it had found a nice place in my lungs, there was in excess of 40 tumors and I was running on roughly 1/4 of my total lung capacity, my lungs looked like a mine field of golf balls (which oddly enough did not bother me). There was also a large donut sized tumor hanging onto the side of my liver, and all my lymph nodes were very unhappy with life. This all occurred while I was visiting family in Vancouver, so I was shipped back home to Calgary and set up with the Tom Bake Cancer Center (TBCC) (No thanks to both governments, AB and BC, my parents had to shell out the money for a private flight back).

    Upon getting to the TBCC the germ cell specialist (Dr. Tina Cheng) and my urologist (Dr. Jay Lee), decided to forgo the orchiectomy and jump right into treatment as my Beta HCG was one of the highest they've ever seen and my AFP was off the charts and the number of tumors was in excess! This is where it gets very interesting as i'm yet to find someone who has undergone the same chemotherapy regime as myself! From this day forward I would be giving myself Innohep injections (blood thinner) for a very long time. When it came down to it with discussing with the doctors, they figure I had cancer for over 2 years which is very strange with TC, and the slowest growing testicle they've ever seen in conjunction with absolutely no side effects until the day of the PE.

    I underwent 4xVIP (no bleo as my lungs were already demolished and it's not very good for high altitude climbing). Each session was 3 days long, and had constant chemotherapy running (72 hour cycle straight) with 3 weeks off in between cycles. This session brought my HCG to near normal levels (~6) for 3-4 months, but the excess turmors were still a very big issue. During this cycle, I lost 35lbs in just under 3 weeks. I was not expected to survive this because of the complications with my lungs, the only reason I am alive they attribute to the fact that I can in the best shape of my life. It took over 2 months for my left lung to recover from the PE. In September I finally underwent the orchiectomy to remove my right testicle. To this point it had only grown to twice its normal size.

    3 months after this initial treatment, the cancer was back (which wasn't totally unforeseen because of the number of tumors left behind). They decided to go ahead with 3xTIP, with a stem cell collection during the 2nd cycle. With this came a change of doctor and a move to the Bone Marrow Clinic and Dr. Doug Stewart. With this new doctor came a new style of cycle, a TIP cycle every 3 weeks, but the chemo was done in only 6 hours a day for 3 days. Unfortunately, I am the worst stem cell producer they've ever seen. They also attempted on the 3rd cycle to which I produced absolutely 0 stem cells. Since this 3xTIP occurred during winter, I was of course skiing all the time as soon as I could meander around the house. Not a recommended course of action when you have a CVC! During this 3xTIP's my body got so used to the drugs that they had very little effect on me. Recovery was 3-5 days max. However the cancer was still very unhappy with the chemotherapy, it just was not fully curing it.

    At this point I had a full check up (i've been having CT's and x-rays all the time) and had a bone marrow biopsy (not a fun activity!) and the there is now only a few tumors in my lungs (~ 4-6 left, none larger than about a nickle) and everything else has cleared up completely. They found only one thing from all this, my body was completely happy with life, no major issues. Only problem is the neuropathy, I can no longer feel my toes and most of my feet, and my fingers (makes life a lot more interesting!), however my hearing is still absolutely perfect (on the order of 1 in 10 million+ for my hearing level), and my lung capacity is above average.

    So in order to collect stem cells my doctor decided to go ahead with a cycle of DICEP. This is the last chemo I just had 3 weeks or so ago. DICEP is a Dose Increased - Etoposide (VB-16 undiluted), Cyclophosphamide, and Cisplatin. Needless to say this was a very unfun affair! My counts bottomed after only 4-5 days, and stayed low for nearly 2 weeks. However as my doctor was desperate to get stem cells from me, they started a course of 2 weeks of 'Stem Gen' and a max dose G-CSF shots a day. When this kicked in and started working, i've never had so much back pain in my life! Needless to say, they got the stem cells barely for 1 transplant (just above 5.5 million cells per kilo). At this point I finally was done with my own injections and they moved me to Warfarin to thin my blood out(rat poison!). The DICEP also once again pushed the cancer back and cleaned out more tumor mass from my lungs, my B-HCG level droped to a new number, 34. To this point i was always in excess of 300-1000 or at 10. Next week I will be back to skiing again!

    Now I have 1-2 weeks until they do the High Dose Chemotherapy (Cyclophosphamide, Etoposide (VB-16 undiluted), and Carboplatin) and an autologous stem cell transplant. This will be done the same as the TIP cycles, over 3 days with 6 hours a day of treatment. Post 3 days I will be given my stem cells back to rescue my bone marrow. Also, this will be my last chemotherapy, and then the surgeries begin to remove the residual tumors from my lungs (this will not be done until they stop shrinking). Weird enough no one ever discussed doing a RPLND.

    I used to think 4xVIP was bad enough.... after 3 I didn't want any more! Now, after a year and 8 treatments, one more doesn't seem bad at all! And I have to say, that the care and treatments and the discussions with the doctors has been great at the Foothills (Unit 57) and the Bone Marrow Clinic. In fact my doctors have actually been in contact with a bunch of doctors from around the world discussing treatment options. Apparently they said this even includes the doctors of Lance Armstrong, but who knows. Well that's my journey so far, I hope you enjoyed this long read! If you have any questions about my treatments and issues feel free to ask!

  • #2
    Wow, I've just added a hero to my list. You live strong, sir. Thanks for sharing your story and your fantastic attitude!
    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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    Comment


    • #3
      NS8000:
      That's quite a story thank's for sharing. You have now reached the summit of a mountain as tall as there is.
      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
        A little update for you here about my TC fun and issues. The doctors have decided that High Dose will not be effective as a DICEP did not put me into a durable remission period. So now the fun begins! I've been moved back to my original doctor (Dr. Tina Cheng) from when this whole thing began. I've been placed in a population of around 40 patients with similar problems (across north america), although i'm one of a very small few that is non-refractory (everything works very well on me, just does not cure it). So as i've seen on this forum, they are going to place me on some sort of Gemcitabine, oxaliplatin, paclitaxel combo with a backup of the lovely TIP cycle which had the biggest effect on me thus far. Also there is talk about the classic Phase 3 drug trials, including a new one that no one from the bone marrow clinic has even heard of. It involves a brand new drug in pill form that supposedly goes to work on T-Cells, but i'll find out more next week about that. Now i've got 2 more weeks of pacing around wondering what they will do with me!

        Comment


        • #5
          I'm sorry you're having such a tough time. Please keep us updated about your treatment and progress.
          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


          • #6
            I'll find out more about the pill today. I am heading back up to the hospital (i live right beside it luckly!) to show my displeasure with the speed of my next treatment. Apparently they believe if I wait a month it will not damage me, which I just cant believe especially when the #1 thing is never delay treatments and never mind the simple fact that my HCG is going up at a fairly steady peace again (hasnt been this high in over 6 months).

            Comment


            • #7
              Well, i'll be going for a TIP hopefully tomorrow (my HCG is going up a TON, sitting at 1500 right now from 500 1 week ago), for 2 or 3 cycles depending on how well it works. It had a very good impact last time. Otherwise i'll be going on GemOx once they get the paperwork to get the Gemcitabine.

              Robert, the pill i'm going on is 'Sutent'. Apparently i'm one of the first germ cell cancers to go on it, but who knows.

              Comment


              • #8
                I missed the 3/11 post and am just catching up. I'll skip the "wow" and go straight to "holy s*@t"!!! You do sound like you have the right fighting attitude. Sorry to hear that you went through so much and are facing more ahead. Thanks for telling us your history with this...we're pulling for you!!!!
                Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

                Comment


                • #9
                  Hi,

                  I am also a new member on this forum and noticed your message.

                  It might be hard to believe, but my history is even longer than yours.
                  I have had multiple chemos and surgeries which all get me in a CR and then within a year I get into troubles again.

                  Currently I am also waiting for my doctor to see what the next action will be.
                  Our thought is also todo Gemcitabine + Oxyplatin, but first want to consult with two expert centers.

                  I am not sure if I am trying to fight the wind, I had some second thought if I should continue on my quest for a cure. However my thought is that I should give it a try and see what happens to my markers after the first two courses.

                  You first mentioned that your doctors were considering Gemcitabine/Oxiplatin/Taxol.
                  Is this still a option, or has your doctor decided todo Gemox. (without the Taxol?).

                  Also did they explain why they thought Sutent could be helpful (in your situation)?

                  Here is some reading for you todo on the three major trials done with Gemox.





                  The limited numbers indicate that this treatment seems to work better than Gemcitabine + Taxol. The combination of all 3 agents that you mentioned has also been done, but it looks like the toxicity profile is too high. (People can't complete all cycles without delaying in-between.)

                  I would love to hear what 'plan' your doctors have made. I saw that you were getting a but impatient. Give them some time though. I am also very impatient, but it takes time for them to consult different collegues and pass them your pretreatment information.

                  Regards,
                  David

                  Originally posted by NS8000
                  Well, i'll be going for a TIP hopefully tomorrow (my HCG is going up a TON, sitting at 1500 right now from 500 1 week ago), for 2 or 3 cycles depending on how well it works. It had a very good impact last time. Otherwise i'll be going on GemOx once they get the paperwork to get the Gemcitabine.

                  Robert, the pill i'm going on is 'Sutent'. Apparently i'm one of the first germ cell cancers to go on it, but who knows.

                  Comment


                  • #10
                    Welcome, David. I'm sorry to hear the road is so long, but your attitude is great. What was your pathology and staging? Keep up the fight.
                    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


                    • #11
                      David:
                      It certainly sounds as if you have done your own research on the treatments for tc. Thats great. I do have to ask this one question, have you been in contact with any of the centers of excellance for the treatment of tc. If not the link is here.
                      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


                      • #12
                        Hi Dadmo, Scott,

                        Originally posted by dadmo
                        David:
                        Thats great. I do have to ask this one question, have you been in contact with any of the centers of excellance for the treatment of tc. If not the link is here.
                        Yes, my dr. would consult with IU (Indiana) and he also indicated that he will also consult with a UK center.
                        We will wait what they have to say before we continue, however, the chance that they will agree that Gemox is the best choice is quite high.

                        While it is very premature, I would also like to take Oral Etoposide after the next treatment as maintenance therapy if I am able to achieve a CR again.

                        In 1998 I was diagnosed with a Extragonadal Retroperitoneum TC.
                        (Non Seminoma, I believe for most part EC).

                        Unlike Mediastinum Extragonal, the retroperitoneum does share the same (relative good) characteristics as Gonadal TC, but because you don't feel or see anything you catch it when it had time to spread and grow.

                        That was the case with me, although when I was diagnosed my organs were all still clean on the CT, I had a very bulky primary tumor with a lot of 'infected' spots.

                        In summary this happened:

                        Diagnosis - 1998
                        1. 4x BEP + 2x EP (CR)
                        2. RPNLD - only nectrotic, mature teratoma found.

                        Was put on survelience, any abnormality growing >3cm would be removed in the expectancy of mature teratoma.

                        This happened a few months later:
                        3. Surgery, removed a 3>cm spot, contained viable cells.
                        4. 2x VIP (Consolidation therapy)
                        About 6-12 month later down the road:
                        5. Surgery, removed another abnormality.
                        About 6-12 month later down the road:
                        6. Surgery, removed another abnormality.
                        About 6-12 month later down the road:
                        7. Surgery, removed another abnormality.
                        (In about 2-3 years I had the above 3 surgeries, in 2 cases my AFP had slightly risen, and normalized after surgery. In 1 case it was unclear if it was just mature teratoma.)

                        A few month after the last surgery my AFP started to go up again:
                        Surgery was getting harder, and my dr. didn't feel it wasn't a long term solution.
                        The next step:
                        8. High Dose chemo consisting of:
                        Induction, Etoposide + Ifosfamide. (This was enough to get my marker normalized again within 14 days after induction, AFP was 90 when we started.)
                        1x HD Etoposide + Carboplatin (without stemcell transplant.)
                        2x High Dose CTC (with stemcell transplant.)

                        After about 1 year after the end of HD course: AFP start rising.

                        9. Surgery to remove 2 abnomalities which both contained viable cells.
                        (AFP normalized after surgery.)

                        10. Got 'consolidation' radiation after surgery in my upper chest.
                        (Needs some explanation to understand this choice.)

                        About 1 year after the previous treatment:
                        Abnomality (in the lowest point of the scar, belly, from the previous surgery), AFP positive.

                        11. Surgery, removed abnomality, however, a CT a few weeks after surgery indicated that there were some new spots about 20 cm from the surgery site.

                        12. Received 4x TIP + 2x TIC. (The C in TIC is Carboplatin.)
                        My AFP normalized after the 4th round. (Was 900)

                        About 3 month after the last treatment my AFP went up again, a PET shows two spots at the Pleura of the Left Lung.
                        We can treat the two spots, but my dr. indicated that the Pleura is a relative open space which mean that it's (almost) sure that a larger area is already 'infected' than we can see on the PET/CT.

                        If there are any people here who have done Gemox with good results I would be happy to hear their story.

                        Regards,
                        David

                        Comment


                        • #13
                          Quiet a story: I don't envie you!

                          However one line of your post intrigued me: "Unlike Mediastinum Extragonal, the retroperitoneum does share the same (relative good) characteristics as Gonadal TC, but because you don't feel or see anything you catch it when it had time to spread and grow." Would you by any chance be aware of any primary literature to that effect?

                          /Matthias

                          P.S.: Best wishes, bro'.



                          Originally posted by dbo
                          Hi Dadmo, Scott,



                          Yes, my dr. would consult with IU (Indiana) and he also indicated that he will also consult with a UK center.
                          We will wait what they have to say before we continue, however, the chance that they will agree that Gemox is the best choice is quite high.

                          While it is very premature, I would also like to take Oral Etoposide after the next treatment as maintenance therapy if I am able to achieve a CR again.

                          In 1998 I was diagnosed with a Extragonadal Retroperitoneum TC.
                          (Non Seminoma, I believe for most part EC).

                          Unlike Mediastinum Extragonal, the retroperitoneum does share the same (relative good) characteristics as Gonadal TC, but because you don't feel or see anything you catch it when it had time to spread and grow.

                          That was the case with me, although when I was diagnosed my organs were all still clean on the CT, I had a very bulky primary tumor with a lot of 'infected' spots.

                          In summary this happened:

                          Diagnosis - 1998
                          1. 4x BEP + 2x EP (CR)
                          2. RPNLD - only nectrotic, mature teratoma found.

                          Was put on survelience, any abnormality growing >3cm would be removed in the expectancy of mature teratoma.

                          This happened a few months later:
                          3. Surgery, removed a 3>cm spot, contained viable cells.
                          4. 2x VIP (Consolidation therapy)
                          About 6-12 month later down the road:
                          5. Surgery, removed another abnormality.
                          About 6-12 month later down the road:
                          6. Surgery, removed another abnormality.
                          About 6-12 month later down the road:
                          7. Surgery, removed another abnormality.
                          (In about 2-3 years I had the above 3 surgeries, in 2 cases my AFP had slightly risen, and normalized after surgery. In 1 case it was unclear if it was just mature teratoma.)

                          A few month after the last surgery my AFP started to go up again:
                          Surgery was getting harder, and my dr. didn't feel it wasn't a long term solution.
                          The next step:
                          8. High Dose chemo consisting of:
                          Induction, Etoposide + Ifosfamide. (This was enough to get my marker normalized again within 14 days after induction, AFP was 90 when we started.)
                          1x HD Etoposide + Carboplatin (without stemcell transplant.)
                          2x High Dose CTC (with stemcell transplant.)

                          After about 1 year after the end of HD course: AFP start rising.

                          9. Surgery to remove 2 abnomalities which both contained viable cells.
                          (AFP normalized after surgery.)

                          10. Got 'consolidation' radiation after surgery in my upper chest.
                          (Needs some explanation to understand this choice.)

                          About 1 year after the previous treatment:
                          Abnomality (in the lowest point of the scar, belly, from the previous surgery), AFP positive.

                          11. Surgery, removed abnomality, however, a CT a few weeks after surgery indicated that there were some new spots about 20 cm from the surgery site.

                          12. Received 4x TIP + 2x TIC. (The C in TIC is Carboplatin.)
                          My AFP normalized after the 4th round. (Was 900)

                          About 3 month after the last treatment my AFP went up again, a PET shows two spots at the Pleura of the Left Lung.
                          We can treat the two spots, but my dr. indicated that the Pleura is a relative open space which mean that it's (almost) sure that a larger area is already 'infected' than we can see on the PET/CT.

                          If there are any people here who have done Gemox with good results I would be happy to hear their story.

                          Regards,
                          David
                          Last edited by matthias; 05-02-07, 10:05 PM.

                          Comment


                          • #14
                            Originally posted by matthias
                            However one line of your post intrigued me: "Unlike Mediastinum Extragonal, the retroperitoneum does share the same (relative good) characteristics as Gonadal TC, but because you don't feel or see anything you catch it when it had time to spread and grow." Would you by any chance be aware of any primary literature to that effect?
                            The TCRC website does mention this:



                            Patients with mediastinal nonseminomatous EGC are typically classed as poor risk patients because these cancers often have unusual biological features that diminish cure rates and add additional complexities to treatment. Despite these unusual characteristics, about half of even these patients are cured. Other extragonadal sites do not share these same adverse biological features and are usually classified with an intermediate prognosis. For all extragonadal seminomas, the outlook is identical to metastatic testicular seminomas with the same high prospect of cure.

                            BTW, I feel that some information on the TCRC website is getting a bit outdated.

                            Here is a more scientific article which mentions this:



                            A quote from the article:

                            Mediastinal nonseminomas have certain unique aspects. They are more frequent in individuals with Klinefelter's syndrome and are associated with a risk of subsequent development of hematologic neoplasia that is not treatment related.[15,16] Approximately 50% will survive with appropriate management.[17] High risk is partially related to tumor bulk, to chemotherapy resistance, and to a predisposition to develop hematologic neoplasia and other non-germ cell malignancies.

                            The prognosis of retroperitoneal nonseminoma is reasonably good and, similar to the situation with nodal metastasis from a testicular primary, is related to tumor volume.


                            However, as I indicated, you begin noticing problems when the disease had time to grow and spread and generate a lot of volume.
                            I know that on my first CT there were slides where 25% of a CT-slice area were taken by the TC.

                            I have asked myself many times if there were signs that could have told me that I should have gone to the dr. earlier. I had some night sweats and uncomfortable back ''pressure'' (I can't call it pain.).
                            But that was only a few weeks before I went to the dr. and it had probably also had spread by then.

                            Regards,
                            David

                            Comment


                            • #15
                              Originally posted by Robert2112
                              I was reading about a study on something like that today that they were finding good results on Tc cases.It "weakened" the cancer cell enough for the chemo to zap it. just courious about that, as it seemed there were alot of places doing studies on it. It sounds exactly like what you were talking about
                              Robert, is it possible to give some pointers finding the information you read.

                              I did find that Memorial is busy starting a Phase II trial with this drug.

                              It seems that it is a great leap forward for kidney cancer patients.

                              Regards,
                              David

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