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Seminoma? Nonseminoma? Traduction. HDC. TIP

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  • Seminoma? Nonseminoma? Traduction. HDC. TIP

    Hi all,

    I have to introduce myself and my brother, but the story is long and now I’m at the airport ready to come back home from Barcelona and with the smartphone I cannot do it properly.

    First of all, sorry for my English. We are from Spain.

    My brother has TC, he’s been in treatment with 4xBEP in South Spain for a Seminoma stage IIIC.

    I always had the suspect that it was not a seminoma, due to the high levels of the bHCG (100,000) and in a moment of desesperation I wrote Dr. Einhorn whom confirmes my suspicions.

    His doctor always assured it was a seminoma and never get in touch with Einhorn.
    Few months later he finished the chemo, no without some problems, and his markers were fine and the PET TAC revealed a good response and partial remision.

    His doctor wants to do the surgery although I told her that Einhorn (and later, MSK) suggest that better wait.

    No ears. During 2 months my brother was without tumour test, although I ask for it, and thanks to another doctor here in Spain his doctor did another PET SCAN the day before the surgery. We cancelled the surgery because we wanted the inform before the operation and THANKS we did it. It showed that the tumour is growing again.
    His doctor called him to go with urgency to the hospital to do a tumour markers test and the resulta are that the bHCG is in 144.

    In summary, he is now with a TIP course BUT his doctor wants to do the RPLND in 3 weeks, and then, restart the 3xTIP to complete the 4 curses.

    Einhorn and MSK says : no logic.

    I know is no logic, I’m in Bcn now I’ve just finished to talk to a doctor that is going to try to convinced her to do 4xTIP.

    We know that we choose the treatment, we can go back home and tell her: he wants 4xTIP and then, the surgery, but I no longer trust in her. I can’t.

    I’ve talked to Dr Einhorn, I know the cost of the high dose chemo, we will assumed if my brother wants to go there (I think he don’t want too much).

    I’m so sorry for all the long story but I’m desesperate and I need all your help, I have two questions:

    THIS QUESTION IS IMPORTANT
    Do you now any traduction service in case we go to Indiana? We are not able to explain in English how it hurts him, o how he feels or anything medical related.

    All doctors leave us the choice of TIP or HDC, although Einhorn prefers HDC. I’m afraid that TIP maybe will be not enough and then we are making the cancer chemo refractory, or am I crazy?

    I’m so lost.
    Thank you for all your help, from south Spain.

    I’m so sorry if this topic is not located properly, but I cannot control too much with the phone, feel free to move where ir correspond.

    A sister

  • #2
    Hi, I am so sorry to read your post. But I think I know how it works in Indiana as a international patient. You have to make an appointment via email or phone call, meantime you have to point out you need a which kind of language interpreter, then they will help you to organize the appointment with an interpreter .Any help you need , you should tell Indiana, they can really offer a lot.

    For TIP or HDC, i don’t know too much, but as you already contacted Dr.Einhorn, then you should follow his advice, there is always the reason behind his advice I think. I trust him and followed him.

    The most important thing is, your brother’s bhcg raises again right after BEP, you need an TC expert to treat him, I am afraid the cure rate is reducing and he needs good hands to treat him now.

    I wish the best of luck for you and your brother

    Amy, Ryan’s mum
    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

    Comment


    • #3
      Thank you VERY MUCH.

      I know that we must follow Einhorn’s advice, but we must “fight” we his doctor here and it seems soooo hard.

      I want to take him to Indiana and do the high dose, we don’t have insurance, we’ll have to pay in money.
      We can sell things we can ask for a bank loan, We will.

      I know that the high dose cost is aprox 200.000$, but I’m afraid of the “not HDC” costs, as tumour markers tests, ct scans and so on.

      And of course, I’m afraid of the language barrier.

      And of everything, I need a ray of hope.

      Thank you very much for telling me your experience.

      Comment


      • #4
        Another information, for international patients without insurance in US, sometimes hospital offered 30-40%off with the treatment cost, if you pay cash. Just for your information.the cost from Indiana is really really reasonable, we was there, but they didn’t ask check too much, even not CTs. We just out of BEPx3 two weeks, the bills are coming!

        BRs

        Amy Ryan’s mum
        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

        Comment


        • #5
          Hola
          Lo siento mucho por tu hermano
          Si el doctor no quiere seguir las recomendaciones de Dr Einhorn, pues creo que debes procurar uno que lo haga, y que estee dispuesto a hablar con el
          Yo lo haria
          Suerte

          Comment


          • #6
            Ryan Bi THAN YOU very much help and really useful information, we are calling right now. My brother is evey tired now to decide, but Dr Einhorn told me that if he wants take HDC, then do 1xTIP here and then go to Indiana. I hope my brother finds the force? Or desire neccesary. I need him in my life.

            Micas thank you very much for your words, I am in a constant struggle but for reasons of the most diverse we are not in an easy situation, I will continue doing my efforts since he is not strong and I hope he decides what is best for him. Thank you

            (SPANISH Micas muchas gracias por tus palabras, estoy en una lucha constante pero por motivos de lo más diversos no estamos en una situación fácil, yo seguiré haciendo mis gestiones ya que él no se encuentra con fuerzas y espero que decida lo mejor para él. Gracias)

            Comment


            • #7
              Espero ayudarte con lo q pongo abajo, es sobre especialistas en Europa
              Existem cirurgiões raros na Europa. Dois na Alemanha e um na Itália. Eu paguei por uma segunda opinião da cl*nica Mayo nos EUA e eles me informaram. Na Alemanha, há o dr Peter Albers em Düsseldorf (o dr. Einhorn também sugere) e o dr. Heidenreich em Colônia. Na Itália há instituto de tumor I em Milão. Espero te ajuda. Boa sorte

              Comment


              • #8
                I don't know how healthcare is set up in Spain, but is it possible to change doctors? Maybe ask Doc E if there is one he has worked with in the past? Avoiding travel costs might make it all more affordable.

                Dave
                Jan, 1975: Right I/O, followed by RPLND
                Dec, 2009: Left I/O, followed by 3xBEP

                Comment


                • #9
                  Hello,

                  I was in the same position as your brother (The exact same), I talked to Dr E, and he told me because my tumor came back to live I needed to do salvage chemo (4xTIP) before doing the RPLND.

                  Started the TIP and stopped at the 3rd cycle because it was killing me (Too much toxicity) and on the recommendation of E, I went to Dusseldorf (Germany) and Dr Peter Albers did the operation. (Peter is the equivalent of E in Europe and he told me about Peter because he was the student of the "creator" of the RPLND)

                  I'm now all clear, so if you need something contact Dr Peter Albers.

                  Another thing, as an advice, your brother will need emotional support, TIP is not comparable with BEP, I found it way way harder.
                  July 2017: Abdomen Tumor 5.3 x 7.4 x 13 cm | AFP 156 | HCG 210 625 | Non seminoma in the left testis | Modules on the right & left lungs

                  Aug 2017: 2xBEP

                  Sep 2017: 1xBEP | AFP 10.9 | HCG 173.6

                  Oct 2017: 1xBEP | AFP 3 | HCG 54.1

                  Dec 2017: CT SCAN | LUNGS CLEAR

                  Feb 2018: I|O tumor on the testis completely burned

                  Feb 2018: Tumor 4.5 x 4.5 & is necrotic (Oncologist decided to wait till the body evacuated)

                  March 2018: Called Dr.Einhorn and he adviced to do RPLND

                  May 2018: AFP rised to 1290 - HCG 0.5 | part of the tumor came back to life| contacted Dr.Einhorn and he advised to do 4xTIP and then do RPLND

                  Comment


                  • #10
                    Originally posted by Manyak View Post
                    Hello,

                    I was in the same position as your brother (The exact same), I talked to Dr E, and he told me because my tumor came back to live I needed to do salvage chemo (4xTIP) before doing the RPLND.

                    Started the TIP and stopped at the 3rd cycle because it was killing me (Too much toxicity) and on the recommendation of E, I went to Dusseldorf (Germany) and Dr Peter Albers did the operation. (Peter is the equivalent of E in Europe and he told me about Peter because he was the student of the "creator" of the RPLND)

                    I'm now all clear, so if you need something contact Dr Peter Albers.

                    Another thing, as an advice, your brother will need emotional support, TIP is not comparable with BEP, I found it way way harder.
                    Can you update your signature? It is great to hear you are all clear!
                    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!
                    4/15/19: all clears up to this date!

                    Comment


                    • #11
                      Thank you very much for all your answer, Manyak thank you very very much for your words.

                      I’m so sorry for the lack of writting, but We landed yesterday night in Indianapolis, tomorrow we have an appointment with Dr Einhorn. At this moment we don’t know if we’ll stay here for the treatment or go home, but what I wanted was a “face to face” between Dr Einhorn and my brother, and hear experience speak.

                      As I said at this moment we don’t know where will be tomorrow, but just in case my brother decide to stay here for the treatment, can anyone please recomend any comfortable and “budget friendly” place to stay.

                      Preferently near to the hospital, and with kitchen, as with chemo my brother barely eat anything, just homemade soups.

                      Thank you very much fornall your help and Manyak congratulations for your all clear, it’s a hard hard battle. Can I ask where are you from?

                      Comment


                      • #12
                        Talk with IU about the "procare" discount, they have good discounts for things. We liked staying at the residence inn in canal park, they had 2 bedroom suites which was important for my wife and I as we had a 1.5 year old with.

                        http://www.procarenetwork.com/Hotels...elStarList.asp
                        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!
                        4/15/19: all clears up to this date!

                        Comment


                        • #13
                          Thank you VERY MUCH biwi, it has very good looking, we are going there today after the appointment to see if it fits.

                          Excuse my English please

                          Comment


                          • #14
                            You're welcome. I went to IU twice, and we made it a mini vacation each time. The first time was for my RPLND, and we got there 2 days early and had a good time touring the city and walking around (even though surgery was looming!). That trip we stayed at the candlewood suites, which was not as convenient since you had to drive to get downtown. Then about 6 months later we came back to participate in the Platinum study, and we made it into a 3 day vacation as well. That 2nd trip we stayed at the residence inn on canal park. Much more central, we could walk to everything. Another reason it was more enjoyable was because I was all clear at that point and the purpose of the trip was vacation and to have blood drawn/hearing checked and complete a survey. IU is about a 10 hour car drive from where we live.
                            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!
                            4/15/19: all clears up to this date!

                            Comment

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