Announcement

Collapse
No announcement yet.

a question from turkey

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • a question from turkey

    firstly hello from turkey.sorry for my english.ı diagnosed in 2006.the pathogy report said non-seminoma(yolksac+embriyonal carsinoma).tumour jumped to my abdomen and my lungs.there was 5 mass in my lungs.ı firsly took 4*BEP.PET report sAİD my abdomen is clear and the masses in my lungs shrinked.then ıtook 4*TIP.and then PET report said only one mass left in my left lung.and ı had lobectomy operation.now there is no mass in my body.and my AFPlevel is 1.75 BHCG level is <2.and my doctor said ıshould take bone marrow transplantasion.ı dont understand why.should ı take bone marrow transplantasion.pleAse help me!
    -diagnosed 6/7/2006
    -AFP:6900 B HCG:14
    -left ı/o 7/7/2006
    -embriyonel carsinoma,yolk sac
    -many patholagical lenf nodes in my abdomen and 5 mass in my lungs
    -started 4*BEP 6/8/2006
    -pet scan said 3 mass in my lungs
    -AFP:4.75 B HCG:<2
    -started 4*TIP
    -PET scan showed only one mass in my left lung
    -AFP:1.75 B HCG<2
    -3/4/2007 ı had left lobectomy operation

  • #2
    I do not have an answer to your question...but wanted you to know your question was being looked at.

    I would suggest getting an opinion, even if via email, from one of the expert centers listed on the site, even though you are in turkey.

    Some doctors may be reticent to tell you "what to do" as they are not familiar with your case...but if you ask if a way that is simply to validate that what is being suggested is standard or part of a protocol, most will feel at ease either writing back or poiting to specific studies.

    For something like this, I suspect what you really want to know is what is the protocol or justification for seeking the marrow...arguably, your current doctor should be able to point you to the data/information that he is basing his recommended course of action on.

    It sounds like you have gone thru a great deal so far and I applaud what you have done...and still, being your own advocate and researching.

    Keep us posted.

    pete
    - lump first noticed 11/20/2005
    - I/O right Dec 8, 2005
    - 95% embryonal / 5% seminoma
    - normal markers PRE surgery
    - no vascular invasion, tunica free of cancer, epididymis free of cancer, lungs free, lymph free
    - Stage I diagnosis
    - surveillance
    - mid feb '06, beta hcg slightly elevated = 4.6...small enlarged lower node seen on CT scan...
    - 3BEP began feb 20, 2006
    - finished 3 BEP, last bleo, april 17, 2006
    - CT scan, blood markers, chest..all clear
    - back on surveillance

    Comment


    • #3
      firstly thank you for your reply.actually ı am a medicine student and ı dont understand why ı should take bone marrow transplantation.ı will learn the details tomorrow.ıwill inform you tomorrow.
      -diagnosed 6/7/2006
      -AFP:6900 B HCG:14
      -left ı/o 7/7/2006
      -embriyonel carsinoma,yolk sac
      -many patholagical lenf nodes in my abdomen and 5 mass in my lungs
      -started 4*BEP 6/8/2006
      -pet scan said 3 mass in my lungs
      -AFP:4.75 B HCG:<2
      -started 4*TIP
      -PET scan showed only one mass in my left lung
      -AFP:1.75 B HCG<2
      -3/4/2007 ı had left lobectomy operation

      Comment


      • #4
        today ı asked my doctor why ı should have bone marrow transplantation and she said the mass in my lungs was embriyonal carcinoma.now there is no mass in my body but they say cancer may recur.now my choice is waiting.what do you preffer?help me!
        -diagnosed 6/7/2006
        -AFP:6900 B HCG:14
        -left ı/o 7/7/2006
        -embriyonel carsinoma,yolk sac
        -many patholagical lenf nodes in my abdomen and 5 mass in my lungs
        -started 4*BEP 6/8/2006
        -pet scan said 3 mass in my lungs
        -AFP:4.75 B HCG:<2
        -started 4*TIP
        -PET scan showed only one mass in my left lung
        -AFP:1.75 B HCG<2
        -3/4/2007 ı had left lobectomy operation

        Comment


        • #5
          When they removed the mass from your lung did it have live cancer in it? If the cancer was live I would recommend more treatment. If the cancer was dead I would choose surveillance.
          Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

          Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

          Comment


          • #6
            thank you for your reply.the mass was alive but should ı choose bone marrow transplantation or more chemotherapy?
            -diagnosed 6/7/2006
            -AFP:6900 B HCG:14
            -left ı/o 7/7/2006
            -embriyonel carsinoma,yolk sac
            -many patholagical lenf nodes in my abdomen and 5 mass in my lungs
            -started 4*BEP 6/8/2006
            -pet scan said 3 mass in my lungs
            -AFP:4.75 B HCG:<2
            -started 4*TIP
            -PET scan showed only one mass in my left lung
            -AFP:1.75 B HCG<2
            -3/4/2007 ı had left lobectomy operation

            Comment


            • #7
              please take this as just my guess....

              if you still have actice cancer, they may be considering high dose chemo followed by stem cell transplant...seems some sites use bone marrow transplant and stem cell transplant interchangeably....as a med student, you probably have access to more info than I would...

              Though I did search the internet as i was curious from your post....and found many links with info such as this:



              http://healthgate.partners.org/browsing/Content.asp?fileName=32907.xml&title=Bone+Marrow+T ransplantation+(BMT)+for+Cancer+Treatment

              My sense is that the transplant is not so much to cure the cancer, but because the chemo kills off so many red and white blood cells...marrow...the transplant allows your body to stay relative strong during or just post high does chemo.

              I'd like to hear what others have to say...and as always, make certain to ask the experts....I am not an expert.
              - lump first noticed 11/20/2005
              - I/O right Dec 8, 2005
              - 95% embryonal / 5% seminoma
              - normal markers PRE surgery
              - no vascular invasion, tunica free of cancer, epididymis free of cancer, lungs free, lymph free
              - Stage I diagnosis
              - surveillance
              - mid feb '06, beta hcg slightly elevated = 4.6...small enlarged lower node seen on CT scan...
              - 3BEP began feb 20, 2006
              - finished 3 BEP, last bleo, april 17, 2006
              - CT scan, blood markers, chest..all clear
              - back on surveillance

              Comment


              • #8
                thank you for your advice.ı asked my situation some experts in america
                .and they said:

                1-You should just be observed for now. If the cancer recurs you would then need 2 courses of high dose chemotherapy with peripheral blood stem cell transplant.

                2-The relapse rate is still significant and would consider ABMT now or at earliest
                sign of disease progression. Would favordoing it now.

                3-I would watch for now if completely resected. If progresses, then need to consider high dose chemotherapy with stem cell transplant.

                ı m really undecided.
                -diagnosed 6/7/2006
                -AFP:6900 B HCG:14
                -left ı/o 7/7/2006
                -embriyonel carsinoma,yolk sac
                -many patholagical lenf nodes in my abdomen and 5 mass in my lungs
                -started 4*BEP 6/8/2006
                -pet scan said 3 mass in my lungs
                -AFP:4.75 B HCG:<2
                -started 4*TIP
                -PET scan showed only one mass in my left lung
                -AFP:1.75 B HCG<2
                -3/4/2007 ı had left lobectomy operation

                Comment


                • #9
                  Do you know what your surveillance schedule would be? That is, how closely would you be observed?
                  Scott, [email protected]
                  right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


                  Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

                  Comment


                  • #10
                    my surveillance schedule isnt set yet.ım now thinking if ıshould have bone marrow transplantation or not.if my choice will be obzervation. ı will be followed every month for blood markers and every 3 months ct scans.
                    -diagnosed 6/7/2006
                    -AFP:6900 B HCG:14
                    -left ı/o 7/7/2006
                    -embriyonel carsinoma,yolk sac
                    -many patholagical lenf nodes in my abdomen and 5 mass in my lungs
                    -started 4*BEP 6/8/2006
                    -pet scan said 3 mass in my lungs
                    -AFP:4.75 B HCG:<2
                    -started 4*TIP
                    -PET scan showed only one mass in my left lung
                    -AFP:1.75 B HCG<2
                    -3/4/2007 ı had left lobectomy operation

                    Comment


                    • #11
                      Although one of your opinions favors going ahead now, all three say observing is a good option. If you would be checked monthly, that sounds like a reasonable risk. What do you think?
                      Scott, [email protected]
                      right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


                      Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

                      Comment


                      • #12
                        actually ı dont know what to do.ı want to be on obzervation.because ı have had chemo for 8 months and ı am tired.ı will keep you posted.thank you for being intersted in my situation.
                        -diagnosed 6/7/2006
                        -AFP:6900 B HCG:14
                        -left ı/o 7/7/2006
                        -embriyonel carsinoma,yolk sac
                        -many patholagical lenf nodes in my abdomen and 5 mass in my lungs
                        -started 4*BEP 6/8/2006
                        -pet scan said 3 mass in my lungs
                        -AFP:4.75 B HCG:<2
                        -started 4*TIP
                        -PET scan showed only one mass in my left lung
                        -AFP:1.75 B HCG<2
                        -3/4/2007 ı had left lobectomy operation

                        Comment


                        • #13
                          today again ı had a blood test and my results is AFP:1.77 B-HCG:<0.1.I hope this monster never attakcs again!
                          -diagnosed 6/7/2006
                          -AFP:6900 B HCG:14
                          -left ı/o 7/7/2006
                          -embriyonel carsinoma,yolk sac
                          -many patholagical lenf nodes in my abdomen and 5 mass in my lungs
                          -started 4*BEP 6/8/2006
                          -pet scan said 3 mass in my lungs
                          -AFP:4.75 B HCG:<2
                          -started 4*TIP
                          -PET scan showed only one mass in my left lung
                          -AFP:1.75 B HCG<2
                          -3/4/2007 ı had left lobectomy operation

                          Comment


                          • #14
                            Great numbers Har! Looks like you are headed for a cure!!!
                            Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
                            Current DVT
                            Current testosterone replacement therapy, Testim.

                            "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

                            Comment


                            • #15
                              Sorry your in such an udecided spot. I can't help with your decision other than to say my husband had 2 rounds of High Dose Chemo with Stem Cell Transplant - obviously not to be taken lightly. Is one of the experts you contacted Dr. Einhorn at Indiana University? If not, please do so. He is very good at responding to emails. Good Luck!
                              Lori and Jon
                              Diagnosed 5/22/2006
                              I/O 5/26/2006, Stage 3, Good
                              Teratoma (Majority), Seminoma (10%), Yolk Sac
                              3xEP then determined not working
                              HDC w/stem cell transplant 8/16/06 to 9/25/06
                              Chest and Neck surgery 10/9/06 - immature teratoma
                              RPLND 11/16/06 - immature Teratoma
                              2/29/2008 - markers continue to be normal!
                              9/16/2008 - released from Dr. Einhorn's care

                              Comment

                              Working...
                              X