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  • New member about to start HDCT and looking for advice

    Hi everyone,

    I am Patrick, a 43-year-old eager to share his story and meet other TC survivors / fighters. I come from Brussels, Belgium, and I am married with 2 kids. I am currently treated in one of the leading centers against cancer here in Belgium.

    I was initially diagnosed with an extra gonadal germ cell tumor (pure seminoma) in September 2020. I had a large retroperitoneal mass (92 X 77 mm) surrounding my left kidney as well as several smaller lymph nodes. No lung, liver or brain metastases. Decision was made to do 3 X BEP which I started in early October and completed in early December. All my tumoral markers went down during the treatment (LHD was 953 U/L in early October but quickly fell to 170 in early November; alpha foeto protein was 4.9 ug/L in November while hcG + beta was < 0.6 IU/L). Overall, BEP was no picnic but I managed reasonably well.

    A PET scan taken in early January 2021 revealed the persistence of a smaller retroperitoneal mass (46 X 33 mm) but the disappearance of the lymph nodes. Decision was made to go for an open left RPLND which was done in the second half of January. Despite this being a difficult procedure in the case of seminomas, the surgeon apparently managed to remove every bit of tumor (at the expense of my left kidney, which I lost).

    Since the resected mass contained about 5% of active cells (confirmed to be an anaplastic seminoma), I was advised to do 2 extra rounds of chemo (Taxol + Gemcitabine; these drugs were apparently chosen in light of their low nephrotoxicity). Adjuvant chemotherapy started in early February and was completed in early March. Although it was shorter than the BEP, it proved to be more difficult as it took place just after the surgery and I was obviously feeling very weak.
    However, my efforts seemed to pay off: a CT scan and a MRI taken on March 31 gave me the all clear and I was eventually declared in remission. I was told that my chances to relapse were low (5-10% max.). I was already moving on with my new life...

    Exactly 2 months later, I felt some kind of abdominal pain, which made me go to the emergency out of caution. While my tumoral markers remain (almost) normal, a MRI and a PET scan show some enlarged lymph nodes (all below 20 mm) and a 40 mm mass in the retroperitoneum. I was told that the next step is to undergo HDCT, consisting of 1 cycle of VIP and 3 cycles of carboplatin with stem cell transplant. The whole thing is due to start tomorrow (June 15) and will last for about 4 months, mostly as an inpatient (which I hate).

    At this point, I am obviously feeling very disoriented and would appreciate any tip / advice / guidance which other forum members may have. I promise myself to fight and live long enough to reciprocate at some point...

    Many thanks in advance.
    Best regards from sunny Brussels,
    Patrick
    Last edited by Pat the Belgian; 06-17-21, 04:32 AM.
    Sept. 2020: diagnosed with an extra gonadal germ cell tumor (large retroperitoneal mass + several smaller lymph nodes. No lung, liver or brain metastases). Seminoma.
    Oct 5 - Dec 3.: Neoadjuvant chemo (3X BEP)
    Jan 19, 2021: L/O RPLND to eliminate the residual mass (which contained 5% of active cells)
    Feb 4. - March 4: Adjuvant chemo (Taxol + Gemcitabine)
    April 8: declared in remission, 5-10% max chance to relapse
    June 10: relapse, start second line chemo consisting of 1X VIP and 3X HDCT (= carboplatin and etopiside, with stem cell transplant)

    Carpe Diem

  • #2
    Hi Patrick,

    I’m sorry to hear of your situation, but it sounds like you’re pretty tough and have much to live for. I’m glad to hear you’re being treated by the top doctors of your country.

    I just finished two cycles of HDCT; one is so different from what you’re getting that I doubt my experience with that will be informative. I did get one cycle of high dose carboplatin, etopiside, and ifosfomide though.

    Thankfully, my side effects were not as bad as BEP. Cisplatin is the most nauseating drug in oncology, and carboplatin is usually nowhere near as bad. I got a bit of nausea when I moved around sometimes, which they treated with drugs for seasickness. Other than that, the process went smoothly, aside from catching the flu. Many people get fatigue or diarrhea; the fatigue goes away pretty quickly and the diarrhea can generally be fixed with medication.

    I am surprised to hear you are getting single agent carboplatin, as here in the United States generally the protocol is carboplatin + etopiside. This could significantly affect your chances of cure so it could be worth asking your oncologist. Here in the US, the best testicular cancer oncologist who invented BEP, Larry Einhorn, freely offers advice, so it may be worth contacting him about this and having him talk to your doctors. His email address is leinhorn@iu.edu.

    Other things I’d recommend during HDCT are to walk at least 3x a day, shower every day, stay out of bed as much as possible, and spend as much time with loved ones. All except the last one will significantly lower your chances of infection, and the last will help keep morale up. Also, drinking a lot of fluids is important to protect the kidneys.

    Currently I’m about 1.5 weeks out of the hospital, and life is quite good. It’s a tough journey getting through HDCT, but it does end.
    Turned 22 September 17,2020 Oct 20, 2020 Dx Stage 2c (bulky disease) nonseminoma. 90% teratoma 8% embryonal carcinoma 2% yolk sac. bHCG 154. Right I/O
    Nov 2, 2020. BEPx1. bHCG down to 6.3
    Nov 23, 2020. BEPx2 bHCG <1.2 (normalized)
    Dec 14, 2020. BEPx3. bHCG <1.2 Feb 3, 2021. Markers rising. bCHG 86
    Feb 22, 2021. TIPx1. bHCG down to 1.6
    March 15, 2021. TIPx2. bHCG down to .6
    April 19, 2021. Stem Cell Transplant 1. GemDMC HDCT
    May 25, 2021.Stem Cell Transplant 2. ICE HDCT

    Comment


    • #3
      Hi Colin,

      Many thanks for taking the time to answer my message. Glad to see that there is some kind of transatlantic solidarity on this forum !

      It is reassuring to read that carboplatin should not be as bad as cisplatin. I must confess that I am not 100 pc certain that my HDCT regimen will only consist of carboplatin but will definitely check it out (I simply received too much info to handle last week...). All your recommendations regarding HDCT make sense. The only thing which worries me is that I have been told that I won't be able to see relatives during the periods of stem cell transplant (this to protect my immunity, also in the Covid context - but I guess you must have had the same problem?). And thanks for passing on the contact details of Dr. E. :-)

      Btw, I just checked your profile and saw that you also went through difficult times over the last 9 months. I also saw that you were enquiring about the RPLND you are about to have. My personal experience with it is that it is not as bad as one may fear. I was able to eat almost normally 10 days after the surgery. I was also quickly able to take short and then long walks but would caution against lifting heavy weights (certainly not in the first 3 months post-op). In any case, I wish you a speedy recovery and will continue to follow your posts.

      All the best,
      Patrick
      Sept. 2020: diagnosed with an extra gonadal germ cell tumor (large retroperitoneal mass + several smaller lymph nodes. No lung, liver or brain metastases). Seminoma.
      Oct 5 - Dec 3.: Neoadjuvant chemo (3X BEP)
      Jan 19, 2021: L/O RPLND to eliminate the residual mass (which contained 5% of active cells)
      Feb 4. - March 4: Adjuvant chemo (Taxol + Gemcitabine)
      April 8: declared in remission, 5-10% max chance to relapse
      June 10: relapse, start second line chemo consisting of 1X VIP and 3X HDCT (= carboplatin and etopiside, with stem cell transplant)

      Carpe Diem

      Comment


      • #4
        Hello Patrick.
        Just a few words of encouragement from Belgium. Hope that you will be cured after these rounds of chemo and HDCT.

        Kind Regards

        Anthony
        Son 21 years old dx 02/2019. Stage 1 at high risk, pure seminoma
        Treatment in Brussels, Belgium
        February 2019: orchidectomy
        March 2019: 1 round Carboplatin adjuvant chemo
        February 2020: one retroperitoneal adenopathy detected around 2cm, BHCG slightly increase
        March-April 2020: 3 rounds BEP
        May 2020: PET scan shows Complete response.All clear.Bhcg at 0
        July 2020: 1st control. All clear
        April 2021: one year All clear
        Son 21 years old dx 02/2019. Stage 1 at high risk, pure seminoma
        Treatment in Brussels, Belgium
        February 2019: orchidectomy
        March 2019: 1 round Carboplatin adjuvant chemo
        February 2020: one retroperitoneal adenopathy detected around 2cm, BHCG slightly increase
        March-April 2020: 3 rounds BEP
        May 2020: PET scan shows Complete response.All clear.Bhcg at 0
        July 2020: 1st control. All clear
        April 2021: one year All clear

        Comment


        • #5
          Hi Anthony,

          Many thanks for your kind words of encouragement. Sometimes, support is closer than what you think :-)

          I am glad to read that your son has received a one-year “all clear”. That’s what all the brothers on this forum are eventually hoping for. For some of us, though, the road is bumpier than others.

          As for me: I received the confirmation from my oncologist that my HDCT regimen will consist of carboplatin and etopiside (thanks Colin!). I am now in my first week of VIP, which will be followed by 2 weeks of rest at home except for one day where I will have to return to the hospital to have my stem cells collected. HDCT will start somewhere around 7 July and I plan to document my journey all along the way in the hope that it will be helpful to others.

          Best, Patrick
          Sept. 2020: diagnosed with an extra gonadal germ cell tumor (large retroperitoneal mass + several smaller lymph nodes. No lung, liver or brain metastases). Seminoma.
          Oct 5 - Dec 3.: Neoadjuvant chemo (3X BEP)
          Jan 19, 2021: L/O RPLND to eliminate the residual mass (which contained 5% of active cells)
          Feb 4. - March 4: Adjuvant chemo (Taxol + Gemcitabine)
          April 8: declared in remission, 5-10% max chance to relapse
          June 10: relapse, start second line chemo consisting of 1X VIP and 3X HDCT (= carboplatin and etopiside, with stem cell transplant)

          Carpe Diem

          Comment


          • #6
            Why was your AFP raised with pure seminoma? Did you have any additional biopsys done on the other masses. Seminoma should not raise AFP

            Comment


            • #7
              Originally posted by Hawk View Post
              Why was your AFP raised with pure seminoma? Did you have any additional biopsys done on the other masses. Seminoma should not raise AFP

              I'm only seeing a mention of an AFP = 4.9 and while that may be elevated according to the reporting laboratory reference range, it is rather insignificant as some will have normal AFP levels that are out of the range. Many experts do not consider anything less than 25 as elevated, but may act earlier if there is a consistent and significant rise in the AFP approaching 25. If the AFP was significant, then yes, one should assume that there are nonseminoma components somewhere and not treat it as if it isa pure seminoma.

              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


              • #8
                Hi Hawk and Mike,

                Many thanks for your question and your reply.

                It is also my understanding that an AFP level of 4.9 (which I had back in the Fall of 2020) is not that high. It is in any case below 7.0, which seems to be the reference value considered here in Europe. Currently, my AFP level is below 3.0 and my HCG also looks normal. In addition, my pathology report indicated twice (after the initial biopsy of Sept 2020 and the RPLND of Jan 2021) that I had a pure seminoma. One of the concerns that I have though is that it is an anaplastic seminoma, which appears to be a more agressive form of cancer…

                As way of update, I have finished my week of VIP and I have been injecting myself for them to harvest my stem cells. A first attempt will be made today (June 25). I should be able to start the first cycle of HDC around July 10.

                I must confess that I am on a rollercoaster both physically and emotionally. Physically, my week of VIP has decreased (but not eliminated) the pain caused by the enlarged lymph nodes in my abdomen. Emotionally, I wonder about the chances of success of the treatment (even if I have read many papers and I know that the odds are about 50%).

                Finally, let me thank all the contributors of this forum. Over the past few days I have read many inspiring stories of fellows who went through HDC. This gave me some confort (yes, there are success stories!) and some great tips to manage the 3 months ahead.

                Best regards from Belgium,
                Patrick
                Sept. 2020: diagnosed with an extra gonadal germ cell tumor (large retroperitoneal mass + several smaller lymph nodes. No lung, liver or brain metastases). Seminoma.
                Oct 5 - Dec 3.: Neoadjuvant chemo (3X BEP)
                Jan 19, 2021: L/O RPLND to eliminate the residual mass (which contained 5% of active cells)
                Feb 4. - March 4: Adjuvant chemo (Taxol + Gemcitabine)
                April 8: declared in remission, 5-10% max chance to relapse
                June 10: relapse, start second line chemo consisting of 1X VIP and 3X HDCT (= carboplatin and etopiside, with stem cell transplant)

                Carpe Diem

                Comment


                • #9
                  I have not been through it but it can definitely be a tough go for a few months but well worth it when it is over. Easier said than done, but try to take each day one at a time and the time will pass by.

                  Glad to hear that the VIP has given some relief.

                  Definitely keep us posted and wishing you all the best.

                  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


                  • #10
                    Hello Patrick,
                    Do you have started HDC ? What are the news ?
                    All the best
                    Anthony
                    Son 21 years old dx 02/2019. Stage 1 at high risk, pure seminoma
                    Treatment in Brussels, Belgium
                    February 2019: orchidectomy
                    March 2019: 1 round Carboplatin adjuvant chemo
                    February 2020: one retroperitoneal adenopathy detected around 2cm, BHCG slightly increase
                    March-April 2020: 3 rounds BEP
                    May 2020: PET scan shows Complete response.All clear.Bhcg at 0
                    July 2020: 1st control. All clear
                    April 2021: one year All clear

                    Comment


                    • #11
                      Hi Anthony,
                      Thanks for your message! It is really nice to see that people are following your story. It gives me some extra strength and keeps me busy.
                      Harvesting the stem cells took place at the end of June. Four attempts were necessary to reach the 9 mn. count (they managed to gather 14 mn. actually).
                      I started the first round of HDCT on Wed. July 7. I tolerated the three days of chemo relatively well. On Monday July 12 I received my stem cells back. No big deal, akin a blood transfusion. It is now waiting for my white cells count going to zero before rebounding. I hope to be discharged around July 25 for 2-3 days at home.
                      My biggest problems so far have been more on the mental side. First, I was placed in a tiny room (8 square meters) where I could hardly move (I am now in a bigger room). Second, I am trying to fight the feeling of boredom. Third, the chemo has alleviated but not eliminated the pain caused by my enlarged lymph nodes in the retroperitoneum, so I always wonder about the efficacy of the treatment….
                      I am getting a lot of support from family and friends, which helps a lot. I only wish I was somewhere else.
                      I wish you all the best and thank you once more for your message. It is really nice to see that people care for each other.
                      Patrick
                      Sept. 2020: diagnosed with an extra gonadal germ cell tumor (large retroperitoneal mass + several smaller lymph nodes. No lung, liver or brain metastases). Seminoma.
                      Oct 5 - Dec 3.: Neoadjuvant chemo (3X BEP)
                      Jan 19, 2021: L/O RPLND to eliminate the residual mass (which contained 5% of active cells)
                      Feb 4. - March 4: Adjuvant chemo (Taxol + Gemcitabine)
                      April 8: declared in remission, 5-10% max chance to relapse
                      June 10: relapse, start second line chemo consisting of 1X VIP and 3X HDCT (= carboplatin and etopiside, with stem cell transplant)

                      Carpe Diem

                      Comment


                      • #12
                        Hi Patrick,
                        Thanks for the news. I hope that you will be able to stay at home a few days with your family. Happy to hear that you have a lot of support from family and friends.
                        I think it is a little bit early to question on the efficacy of the treatment. I can imagine that the treatment is not an easy way but you should be confident.
                        Take care and all the best.
                        Anthony
                        Son 21 years old dx 02/2019. Stage 1 at high risk, pure seminoma
                        Treatment in Brussels, Belgium
                        February 2019: orchidectomy
                        March 2019: 1 round Carboplatin adjuvant chemo
                        February 2020: one retroperitoneal adenopathy detected around 2cm, BHCG slightly increase
                        March-April 2020: 3 rounds BEP
                        May 2020: PET scan shows Complete response.All clear.Bhcg at 0
                        July 2020: 1st control. All clear
                        April 2021: one year All clear

                        Comment

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