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HDCT Success stories? I'm starting to freak out.

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  • HDCT Success stories? I'm starting to freak out.

    Hi Everyone,

    First post here, been lurking since diagnosed in January.

    Stage 2c 100% Seminoma. Bulky tumor. Primary tumor site was my left testi and a met into the lypmhs in my back, tumor was 9 inches, pressing against my kidney and spine, when we finally figured out what was wrong and why I was in blinding pain.

    4xEP with Orc and nerve sparing RPLND by Dr. Presti from Stanford, then about 4 months later had a recurrence in 3 lymphs in my retroperitoneum. AFP bumped up to 27 which my oncology team said was 3 possibilites: either my liver being a bit damaged, a mutation in my cancer, or (and this is rare) that my Seminoma released a little AFP, which has been documented. They rechecked all my paths and still came back 100% Seminoma. Bones clear, liver clear, brain clear, no mets anywhere except some lymphs, which I know is a blessing.

    My oncologist recommend 2x TIP then HDCT at Stanford and I'm currently post transplant for 1 with 2 more to go. Start my next one on the 27th. We are doing the MSKK protocol of 3x instead of the IU 2x, which is fine. So far I'm doing ok, tumor markers are down to normal for all three, blood work coming back good, kidneys and liver function holding up, weight is good, fatigue is brutal. Not on the TIGER trial just doing the standard care.

    I've been searching around here for people who went through HDCT and had it work. Found a few stories here of people who it didn't work for and it's freaking me the **** out.

    I'm 33 and just got married in September. I don't want to make my wife a widow. I need to know that this can work. I have lost a lot of faith in chemo since the recurrence after EP. Can anyone out there tell me they did this and had it work? I know that's a silly thing to ask for but I really need to hear some success stories as I fight this.

  • #2
    It worked for me. The hardest part is the not knowing.
    Your on roller coaster ride right now but please hang on.
    I'm coming up on 6yrs remission post HDCT. I had the same cell type as you. This is the time you really need to trust in yourself, loved ones and the medical staff taking care of you. So just hang in there and the ride will come to a stop.
    Jan 2012- U/S mass in Left testicle
    Feb 2012- I/O performed to remove cancer
    Mar 1,2012- pathology pure seminoma
    Mar 7, 2012 PET SCAN stage IIa
    April 2012 Mayo clinic carbolite.
    May 2012 carbolite failed, started BEP x3
    August 7th 2012- BEP complete
    April 2013 CT/PET show relapse
    May 2013 RPLND
    Aug 2013 Relapse again Started VIeP x2
    Oct 2013 HDC AUTOLOGOUS
    Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
    Feb 2014 confirmed false positive all clear FINALLY !
    Jan 2015 1 year cancer free Pet/CT scan
    Jan 2016 2 years cancer free "Pet/CT scan
    Jan 2017 3 years cancer free "Pet/CT scan
    Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

    Comment


    • #3
      Thank you for sharing! It's good to hear I'm not the only one out there. I'm ready for the fight.

      Comment


      • #4
        Hi 1 inCali,

        You are not alone. We are together with you. With this battle, no one is easy. In my memories, there are some successful cases with HDC . Don’t loos your faith. You will come to a cured end!

        Best wishes to you!

        Amy, Ran’s mom
        Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal

        08/23/2019 Bloodwork, Abdomen CT and Chest X-ray all normal

        Comment


        • #5
          The hardest part for me mentally was the being stuck in a room all day everyday. When I was able to get out and walk around I didnt want to go back. Just just have to be super careful about infections and secondary diseases coming in contact with you.
          Food wise I survived off of naked fruit drinks. I had such bad digestive ulcers from my mouth all thru my system. But again I found naked fruit drinks the only thing I could tolerate and didnt pay for it dearly.
          Jan 2012- U/S mass in Left testicle
          Feb 2012- I/O performed to remove cancer
          Mar 1,2012- pathology pure seminoma
          Mar 7, 2012 PET SCAN stage IIa
          April 2012 Mayo clinic carbolite.
          May 2012 carbolite failed, started BEP x3
          August 7th 2012- BEP complete
          April 2013 CT/PET show relapse
          May 2013 RPLND
          Aug 2013 Relapse again Started VIeP x2
          Oct 2013 HDC AUTOLOGOUS
          Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
          Feb 2014 confirmed false positive all clear FINALLY !
          Jan 2015 1 year cancer free Pet/CT scan
          Jan 2016 2 years cancer free "Pet/CT scan
          Jan 2017 3 years cancer free "Pet/CT scan
          Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

          Comment


          • #6
            Originally posted by eodtech2001 View Post
            The hardest part for me mentally was the being stuck in a room all day everyday. When I was able to get out and walk around I didnt want to go back. Just just have to be super careful about infections and secondary diseases coming in contact with you.
            Food wise I survived off of naked fruit drinks. I had such bad digestive ulcers from my mouth all thru my system. But again I found naked fruit drinks the only thing I could tolerate and didnt pay for it dearly.
            So much this. I hate the feeling of being trapped. I'm a very social person, used to have people over for dinner once or twice a week and now I usually only "hang out" with people when playing video games online. So far I've been lucky with being able to eat basically everything, but my goto is Carnations instant breakfast chocolate, it's a life saver when I'm simply just not hungry for anything else. I miss my life so much, and can't wait to get back to living it.

            Comment


            • #7
              At least you have video games to occupy your time. I had 5 or 6 channels on the TV. I had my cell phone to stream movies but I went stir crazy. I wasn't allowed to leave my room during the chemo days and for a week after wards. I was like a caged pigeon just pacing back and forth.
              Video gaming wasn't the hot trend for portable 6 yrs ago. I was alot luckier then the guys across the street at the Nashville hospital. Those guys couldn't level the isolation area ever. So they just walked in circles all day every day. I would walk across the walkway from the VA hospital and go try and mouth thru the glass to say hello. Didnt work out very well. I would walk the halls on the 5th floor where the mental health ward was at. Got to hear and see all kind of crazy thru the doors and glass.
              Jan 2012- U/S mass in Left testicle
              Feb 2012- I/O performed to remove cancer
              Mar 1,2012- pathology pure seminoma
              Mar 7, 2012 PET SCAN stage IIa
              April 2012 Mayo clinic carbolite.
              May 2012 carbolite failed, started BEP x3
              August 7th 2012- BEP complete
              April 2013 CT/PET show relapse
              May 2013 RPLND
              Aug 2013 Relapse again Started VIeP x2
              Oct 2013 HDC AUTOLOGOUS
              Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
              Feb 2014 confirmed false positive all clear FINALLY !
              Jan 2015 1 year cancer free Pet/CT scan
              Jan 2016 2 years cancer free "Pet/CT scan
              Jan 2017 3 years cancer free "Pet/CT scan
              Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

              Comment


              • #8
                At least you have video games to occupy your time. I had 5 or 6 channels on the TV. I had my cell phone to stream movies but I went stir crazy. I wasn't allowed to leave my room during the chemo days and for a week after wards. I was like a caged pigeon just pacing back and forth.
                Video gaming wasn't the hot trend for portable 6 yrs ago. I was alot luckier then the guys across the street at the Nashville hospital. Those guys couldn't level the isolation area ever. So they just walked in circles all day every day. I would walk across the walkway from the VA hospital and go try and mouth thru the glass to say hello. Didnt work out very well. I would walk the halls on the 5th floor where the mental health ward was at. Got to hear and see all kind of crazy thru the doors and glass. But at 1 point I got so sick from a blood infection I was in a coma for about a week. But thank god all that is over. Matter of fact I grafted my second round yesterday 6 yrs ago
                Jan 2012- U/S mass in Left testicle
                Feb 2012- I/O performed to remove cancer
                Mar 1,2012- pathology pure seminoma
                Mar 7, 2012 PET SCAN stage IIa
                April 2012 Mayo clinic carbolite.
                May 2012 carbolite failed, started BEP x3
                August 7th 2012- BEP complete
                April 2013 CT/PET show relapse
                May 2013 RPLND
                Aug 2013 Relapse again Started VIeP x2
                Oct 2013 HDC AUTOLOGOUS
                Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
                Feb 2014 confirmed false positive all clear FINALLY !
                Jan 2015 1 year cancer free Pet/CT scan
                Jan 2016 2 years cancer free "Pet/CT scan
                Jan 2017 3 years cancer free "Pet/CT scan
                Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

                Comment


                • #9
                  It most definitely can be effective. The forum here has its own selection bias, where folks that are going through treatment successfully generally have no need to register or post. 2nd line or HDC definitely are effective in many situations.
                  6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                  6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                  7/7/15: bHCG 56, AFP 42, LDH 322
                  7/13/15: begin 4xEP, end 9/18/15
                  10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                  10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                  4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                  4/20/16: RPLND @ IU - teratoma only!
                  10/22/19: all clears up to this date!

                  Comment


                  • #10
                    Just catching up on your posts. So your AFP went up to 27 and they saw 3 nodes in your abdomen, 4 months after EP, and started HDC w/ stem cell rescue? Out of curiosity how big were the nodes?

                    In your situation I would have full faith that the HDC treatments will be more than effective as you seem to be in a good situation as far as relapses can go after EP. Your labs are relatively low, the relapse was at 4 months, there is no bone or brain involvement, etc.

                    Biwi is right in that many times, the forums will select for the guys that have had a harder go and the others after HDC are off living their life and not posting so please keep that in mind and keep faith that the HDC will be more than effective.

                    Mike
                    Oct. 2005 felt lump but waited over 7 months.
                    06.15.06 "You have Cancer"
                    06.26.06 Left I/O
                    06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                    06.30.06 It's Official - Stage I Seminoma
                    Surveillance...
                    Founded the Testicular Cancer Society
                    6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                    For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                    Comment


                    • #11
                      Originally posted by Mike View Post
                      Just catching up on your posts. So your AFP went up to 27 and they saw 3 nodes in your abdomen, 4 months after EP, and started HDC w/ stem cell rescue? Out of curiosity how big were the nodes?
                      Yes that's correct, first time the AFP rose at all during all of this. It's back down to 3 now, has been since the first round of TIP. The nodes were a "mantle" of three nodes that had grown to about 8cm. My oncologist said it was a bit of an aggressive growth but that aggressive growth is also more susceptible to chemotherapy.

                      Comment


                      • #12
                        Originally posted by 1inCali View Post

                        Yes that's correct, first time the AFP rose at all during all of this. It's back down to 3 now, has been since the first round of TIP. The nodes were a "mantle" of three nodes that had grown to about 8cm. My oncologist said it was a bit of an aggressive growth but that aggressive growth is also more susceptible to chemotherapy.

                        The 8 cm isn't terribly large by any means and I would have full faith that the HDC will have the best of outcomes.

                        Mike
                        Oct. 2005 felt lump but waited over 7 months.
                        06.15.06 "You have Cancer"
                        06.26.06 Left I/O
                        06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                        06.30.06 It's Official - Stage I Seminoma
                        Surveillance...
                        Founded the Testicular Cancer Society
                        6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                        For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                        Comment


                        • #13
                          Just wanted to update everyone. 2nd transplant went well, unfortunatly caught C. Diff and was in the hospital for 4 days. Worse thing ever, thought my guts were going to exit my body, but after some solid antibiotics and fluids I'm feeling much stronger, have engrafted and am able to relax at home.

                          3rd transplant is happening on the 25th. Praying that after this I'll be able get some all clear scans going and move on with my life.

                          Comment


                          • #14
                            Good luck tomorrow, 1inCali.

                            Comment


                            • #15
                              Originally posted by ERDR View Post
                              Good luck tomorrow, 1inCali.
                              Hey thanks so much! As with all things nothing is certain. Had to delay for a few days, my platelet count was still a bit low so we're doing bloodwork on Wednesday and hopefully will be admitted next Thursday. Fingers crossed!

                              Comment

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