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  • Another Stage 3c - My Story

    First, a big thanks to everyone here for sharing your stories and insights. The information you guys post here has been priceless for me. Here is my story:

    Jan '10 - Told my GP that I am always getting sick (unusual for me) and I feel like "things are going down" during my annual check up. He said stress as usual. He also examined my testicals and did not find anything.

    June '10 - Carried a somewhat heavy luggage for a little bit and developed a back pain the next day. Feeling tired and getting sick.

    Oct '10 - Back pain is still there. Gets worse with sitting. I am doing 60 push ups and sit ups a day that provide some relief for a few hours, but then, it is back. Pain wakes me up at night. I avoid the doctor "knowing" that he/she will tell me that it is back injury and I need to do physical exercise to make it better.

    Nov'10 - Developing tongue sores that do not seem to heal. Never had any sores. Thinking I am under too much stress. BTW, I never ever felt anything in my testicles even though I check them regularly.

    Jan '11 - Went to emergency room due to blurred vision. I also had shortness of breath for the last three days. After an X-ray and some blood tests, I was diagnosed with Pulmonary Embolism (PE). Dr said it can be deadly and they need to find out why. They put me under a chest CT and found many blood clots in lungs as well as some suspicious looking nodules! And, incidentally a very large looking mass just under my diaphragm. Ordered more CT and saw a 7*7*10 cm mass in my abdomen pushing my spine (the back pain). They also saw some nodules on my liver. The ER doctor was very scared which made me scared as bad news kept coming. But I managed to stay calm (don't know how or why). I was admitted to the hospital. They put me on Heparin to thin the blood. Next night, an onco walked into my room and told me that my AFP was 13,000 and bHCG 110 and that with this spread pattern, this could only be testicular cancer. By that time, I knew it would be some kind of cancer. He then told me that he doesn't promise that I will win Tour de France, but he will put me back on my bike. I still remember how I felt after his words. Next day, ultrasound showed some non-homogeneous tissue (no mass or cancer looking formations) on the right testis. The pathology report showed necrosis. The docs thought that it started there and melted away after it spread. They also placed an inferior vena cava (IVC) filter due to PE. Because there were blood clots in the cava below the renal arteries, they had to put it above, in an unideal position. The mass completely occluded my vena cava. I also started injecting myself Lovenox in the belly everyday to thin the blood. Oh, also, as a bonus, I developed a huge hemantoma in my scrotum right after orchioctemy (size of a pine apple). I couldn't walk for a few months!

    Jan '11 - April "11 4*BEP - Can't walk much due to hematoma. Holding it up really helps btw. Other than that, relatively uneventful except for the second bleo of each cycle. Bleo caused fever and extreme chills for me. I also hated the steroids. AFP was 13,000 to start. It fell to 4,400, then to 238, then to 35. After that, it kept falling but at the end of my 4th cycle, it was still around 20. My CT scan showed significant resolution of cancer. Lungs and liver appeared clean. Abdomen mass was down to 3.5*3.5. Dr Einhorn recommended RPLND with Dr Foster. He was also OK with AFP not being less than five. He is OK as long as it doesn't rise. Dr Foster also said sometimes AFPs go down slowly and a high AFP doesn't necessarily mean active cancer.

    May '11 - RPLND with vena cava dissection at IU. Dr. Foster said I have developed collaterals to carry blood back to my heart and cutting my cava should not make a difference. He told me that "it should be relatively straight forward". I was really amazed by his words. How can it be straight forward when they cut one of the biggest veins in your body that goes into your heart? I guess that's why IU deserves to be called a center of excellence. The pathology of the remaining mass was 100% necrosis. Best possible news ever. My AFP also went down to 3 right after the surgery. Dr Einhorn told me there is a 90 percent chance that they would find necrosis if they were to biopsy the remaining small lymph nodes in my lungs.

    June '11 (today) - It has been three weeks since the surgery. I still can't walk straight and have some claudication in my right thigh, but it is getting better. My legs were swollen after the surgery (I was 180 lb after the surgery) , but they are normal now ( I am now 150 lb). I also kept having some blood in my urine for a while, but that also seem to be going away. I bought a ticket to Vegas the other day. I'll be there in a few weeks to play poker.

    It has been quite a ride since the ER doc thought that I didn't have much time to live six months ago. I am in remission now. I can't say that I am cured yet, but I wanted to let everybody out there know that there will be better days. I am still not on my bike, but almost there. Congrats if you read it all and didn't get bored. Thanks again for all the information you guys post in here.
    Jan '11 - Stage IIIc, Mets in lungs and liver, abdo 7*7, pulmonary embolism
    Right I/O AFP 13,000, bHCG 110, Scrotal Hematoma, IVC Filter
    4*BEP AFP 20 end of 4*BEP
    May '11 - RPLND @ Indiana U - inferior vena cava dissected, necrosis, AFP<5
    Surveillance (blood & X rays) and all clear for 24 months
    April '13 - AFP 26 , went up to 46 in a week, Negative CT Scan, Ultrasound and head MRI
    4xTIP - almost normal AFP, but started rising again
    2 x HDC with Autologous Stem Cell Transplant - AFP almost normal but started rising again
    Lost kidneys, damaged liver, chirhosis, ascites 2 liters per day, dialysis 3 times per week, disabled
    2 Lung Wedge Resections -

  • #2
    Bored?! I can think of a lot of adjectives to describe your story but "boring" is definitely not one of them!

    All I can say is, I'm very sorry you've had to go through all this but I'm glad you worked with Einhorn, I'm glad you told your story, and I'm glad you're here. Thanks for sharing, and keep up the great recovery work!
    Husband Shaun diagnosed March 2010. AFP 4571, HCG 3340.
    6cm x 6cm x 8cm retroperitoneal mass + 1cm nodule in right lung.
    Stage IIIb, Intermediate Risk.
    Left I/O March 9/10: 75% EC, 20% Teratoma, 5% Yolk Sac + Seminoma.
    3xBEP + 1xEP March 15 - May 21/10: markers normal.
    Bilateral RPLND July 28/10: 9.5 x 7 x 4.5cm mass, teratoma only.
    Chylous Ascites Aug/Sep.
    November 2012 All Clear
    Continuously monitoring 0.9 x 1.7cm omental nodule (possible fat necrosis)

    www.teamshaun.wordpress.com

    Comment


    • #3
      Thank you for sharing your story - I am going to send the link to my husband, because your stories sound so similar, minus a few days difference in the timeline (his severe backpain escalated just before new year's eve rather than Jan).

      I am intrigued by the RPLND at an AFP of 20 - Kelcy's (husband) went down to 35 after 3rd cycle and to 22 by 4th, was determined to be refractory and went to salvage ~ 6 weeks later rather than RPLND. Now refractory to that and working to schedule tandem transplant, and traveling to see Einhorn.

      It is great to hear such a similar story be such a success! Thanks.

      Tracy
      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


      • #4
        Thanks for sharing, and im glad everything is looking good from here on out.

        The two best days in my life was first finishing BEP, and the 2nd was a few days later when all my markers were perfect
        Initial diagnoses: Elevated hCG, Left I/O 17-June-2010. Prosthetic implant.
        Pathology: Stage 1b, Seminoma/Teratoma
        Treatment: Surveillance. hCG normalised 07/10
        Relapse: Elevated hCG. 3xBEP finished 24/01/2011

        Comment


        • #5
          A tough 18 months my friend but you're a true warrior!

          Here's to brighter days ahead!
          Dave Hanson
          Found lump 18/02/2011
          Ultrasound confirmed mass 23/02/2011
          CT Abdomen, pelvis, chest (clear) 24/02/2011
          Left I/O 1/03/2011
          99% Seminoma <1% Unknown germ cell 10/03/2011
          Staging T1 - 1A 10/03/2011

          2 month - 27/04/2011 - All clear!
          5 month - 16/07/2011 - All clear!
          9 month - 22/12/2011 - All clear!
          14 month - 22/12/2011 - All clear!


          Yesterday was history, tommorrow a mystery, but today is a gift. That's why it's called the "present"

          Comment


          • #6
            Welcome to the forum. This story is absolutely amazing, and it is very reassuring to read that even in advanced cases, this disease is beatable. No doubt you will be back on that bike before you know it.
            "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
            11.22.06 -Dx the day before Thanksgiving
            12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

            Comment


            • #7
              Thanks for sharing your story, and glad to hear that things are going well! Also interesting to see yet another arlingtonian on the board. My urologist and oncologist both said they had seen a spate of TC cases in the area in the past year or so, must be odd luck.

              Comment


              • #8
                Never boring. You have been through very much. I wish you the best in your complete recovery. My Jay was diagnosed 3Cbulky. He had the largest tumor that his doctor had seen in the abdomin and it was smaller then yours I think. He had a RPLND after 4*BEP. I am glad that you are doing well. Keep your surveillance check-ups.

                Diagnosed Mixed Germ Cell tumor Carcinoma and classic seminoma StageIIC 6*8cmbulky June 26-08
                Left I/O June 26-08 4*BEP July-08-Sept-08
                Mets to Abdomin/chest,
                Stage III, , 6*8 cm Jul 08
                Markers normalized Nov08, residual tumor 3*2cm in abd. 13mm in chest. Spinal Stenosis,Neuropathy RPLND feb 09
                Found all three: Cancer, teratoma and scar tissue
                10/09 B-HCG up to 39.90, recurrent TC, 2*VIP 12/09, TI started 05/11/2010, stem cell infusion 5/18/2010 day of rebirth
                08/10 all clear

                Comment


                • #9
                  Hi,

                  Sorry that you have gone through so much but thank you for sharing your story and also the positive outcome.

                  Take care of yourself and wishing you all the best for the future.
                  Val Brother (23 when diagnosed) : Dianosed 14/09/2009, testicle removed, Non sem diagnosed. Tumour markers 36000 before op and dropped to 17000 after operation.. Chemo started end of september 4 x BEP. Tumour markers normal at end of chemo. RPLND 26 Feb 2010 No cancer found. Latest Appointment November 2013- CT and markers normal http://www.tc-cancer.com/forum/core/...es/biggrin.pnghttp://www.tc-cancer.com/forum/core/...es/biggrin.pnghttp://www.tc-cancer.com/forum/core/...es/biggrin.png

                  Comment


                  • #10
                    Amazing story, you are a fighter for sure. Glad to know that you are beating it and wish you a full recovery very very soon.

                    Thank you for posting and sharing with others it gives hope to other people who read these boards.

                    Good luck in Vegas are you going to the WSOP? I am also a big fan of playing poker but can not go to Vegas this year due to BEP.

                    Cheers!
                    Right I/O 4/6/11
                    Stage II embryonal carcinoma
                    Chemotherapy: 3xBEP
                    1st Cycle - 5/9/11
                    2nd Cycle delayed low Neutrophil
                    2nd Cycle - 6/6/11
                    3rd Cycle - delayed lung/breathing issues

                    Comment


                    • #11
                      Thanks

                      Thank you for your post. I may even be able to sleep tonight.


                      Originally posted by Tarc79 View Post
                      First, a big thanks to everyone here for sharing your stories and insights. The information you guys post here has been priceless for me. Here is my story:

                      Jan '10 - Told my GP that I am always getting sick (unusual for me) and I feel like "things are going down" during my annual check up. He said stress as usual. He also examined my testicals and did not find anything.

                      June '10 - Carried a somewhat heavy luggage for a little bit and developed a back pain the next day. Feeling tired and getting sick.

                      Oct '10 - Back pain is still there. Gets worse with sitting. I am doing 60 push ups and sit ups a day that provide some relief for a few hours, but then, it is back. Pain wakes me up at night. I avoid the doctor "knowing" that he/she will tell me that it is back injury and I need to do physical exercise to make it better.

                      Nov'10 - Developing tongue sores that do not seem to heal. Never had any sores. Thinking I am under too much stress. BTW, I never ever felt anything in my testicles even though I check them regularly.

                      Jan '11 - Went to emergency room due to blurred vision. I also had shortness of breath for the last three days. After an X-ray and some blood tests, I was diagnosed with Pulmonary Embolism (PE). Dr said it can be deadly and they need to find out why. They put me under a chest CT and found many blood clots in lungs as well as some suspicious looking nodules! And, incidentally a very large looking mass just under my diaphragm. Ordered more CT and saw a 7*7*10 cm mass in my abdomen pushing my spine (the back pain). They also saw some nodules on my liver. The ER doctor was very scared which made me scared as bad news kept coming. But I managed to stay calm (don't know how or why). I was admitted to the hospital. They put me on Heparin to thin the blood. Next night, an onco walked into my room and told me that my AFP was 13,000 and bHCG 110 and that with this spread pattern, this could only be testicular cancer. By that time, I knew it would be some kind of cancer. He then told me that he doesn't promise that I will win Tour de France, but he will put me back on my bike. I still remember how I felt after his words. Next day, ultrasound showed some non-homogeneous tissue (no mass or cancer looking formations) on the right testis. The pathology report showed necrosis. The docs thought that it started there and melted away after it spread. They also placed an inferior vena cava (IVC) filter due to PE. Because there were blood clots in the cava below the renal arteries, they had to put it above, in an unideal position. The mass completely occluded my vena cava. I also started injecting myself Lovenox in the belly everyday to thin the blood. Oh, also, as a bonus, I developed a huge hemantoma in my scrotum right after orchioctemy (size of a pine apple). I couldn't walk for a few months!

                      Jan '11 - April "11 4*BEP - Can't walk much due to hematoma. Holding it up really helps btw. Other than that, relatively uneventful except for the second bleo of each cycle. Bleo caused fever and extreme chills for me. I also hated the steroids. AFP was 13,000 to start. It fell to 4,400, then to 238, then to 35. After that, it kept falling but at the end of my 4th cycle, it was still around 20. My CT scan showed significant resolution of cancer. Lungs and liver appeared clean. Abdomen mass was down to 3.5*3.5. Dr Einhorn recommended RPLND with Dr Foster. He was also OK with AFP not being less than five. He is OK as long as it doesn't rise. Dr Foster also said sometimes AFPs go down slowly and a high AFP doesn't necessarily mean active cancer.

                      May '11 - RPLND with vena cava dissection at IU. Dr. Foster said I have developed collaterals to carry blood back to my heart and cutting my cava should not make a difference. He told me that "it should be relatively straight forward". I was really amazed by his words. How can it be straight forward when they cut one of the biggest veins in your body that goes into your heart? I guess that's why IU deserves to be called a center of excellence. The pathology of the remaining mass was 100% necrosis. Best possible news ever. My AFP also went down to 3 right after the surgery. Dr Einhorn told me there is a 90 percent chance that they would find necrosis if they were to biopsy the remaining small lymph nodes in my lungs.

                      June '11 (today) - It has been three weeks since the surgery. I still can't walk straight and have some claudication in my right thigh, but it is getting better. My legs were swollen after the surgery (I was 180 lb after the surgery) , but they are normal now ( I am now 150 lb). I also kept having some blood in my urine for a while, but that also seem to be going away. I bought a ticket to Vegas the other day. I'll be there in a few weeks to play poker.

                      It has been quite a ride since the ER doc thought that I didn't have much time to live six months ago. I am in remission now. I can't say that I am cured yet, but I wanted to let everybody out there know that there will be better days. I am still not on my bike, but almost there. Congrats if you read it all and didn't get bored. Thanks again for all the information you guys post in here.
                      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


                      • #12
                        Thanks everybody for your good wishes! When will I start walking with my back straight after RPLND? It has been four weeks and I am still not there.

                        CW406 - I was treated at VHC in Arlington. Did you go there as well? My doc has just mentioned that he has yet another new patient. I guess DC Metro area has a lot of young working people due to government and military

                        Originally posted by LION View Post

                        Good luck in Vegas are you going to the WSOP? I am also a big fan of playing poker but can not go to Vegas this year due to BEP.
                        Unfortunately, not to the WSOP. I'll be playing at the more modest tournaments. The idea of just getting out of home/bed is exciting just by itself.
                        Jan '11 - Stage IIIc, Mets in lungs and liver, abdo 7*7, pulmonary embolism
                        Right I/O AFP 13,000, bHCG 110, Scrotal Hematoma, IVC Filter
                        4*BEP AFP 20 end of 4*BEP
                        May '11 - RPLND @ Indiana U - inferior vena cava dissected, necrosis, AFP<5
                        Surveillance (blood & X rays) and all clear for 24 months
                        April '13 - AFP 26 , went up to 46 in a week, Negative CT Scan, Ultrasound and head MRI
                        4xTIP - almost normal AFP, but started rising again
                        2 x HDC with Autologous Stem Cell Transplant - AFP almost normal but started rising again
                        Lost kidneys, damaged liver, chirhosis, ascites 2 liters per day, dialysis 3 times per week, disabled
                        2 Lung Wedge Resections -

                        Comment


                        • #13
                          Tarc Thanks for sharing, no TC story is ever boring especially 3C stagers. I am glad things worked out for the better and that you consulted IU.revovery sucks, but this will all be just a good story in the near future. A true worrior indeed, Stay on top of those surveillance dates, no excuses to miss one after all you have been through.

                          Good Luck!

                          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


                          • #14
                            Wow, incredible story, Tarc79. I also received my treatment at VHC in Arlington. Hope they're taking as good care of you as they did me.

                            JPM
                            JPM

                            March 2011: Right I/O, Stage IA classic seminoma, 5.0 x 4.5 x 3.5 cm
                            May 2011: Single-Agent Carboplatin
                            Currently ALL CLEAR

                            Comment


                            • #15
                              I got my treatment through virginia cancer specialists, with the first round out at their fairfax office and the second round at their infusion center in VHC. My experience with them was very, very good.

                              Comment

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