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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!
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!
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