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  • #16
    Update

    My son had his hearing test today and had a pick line put in for chemo on Monday. They are giving 4 rounds of BEP but at lower doses. Is that a good idea, because I don't want it to come back on him. Also will he have to have a RPLND later? The dr said that the PET scan came back negative for any tumors in the lymph nodes and that the teratoma is usually benign. Also his abdomen came back clear. Only one nodule in his lung is active and has grown a fraction. I hope this dr knows what he is doing but he seems like a good oncologist

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    • #17
      Originally posted by sandy54 View Post
      My son had his hearing test today and had a pick line put in for chemo on Monday. They are giving 4 rounds of BEP but at lower doses. Is that a good idea, because I don't want it to come back on him. Also will he have to have a RPLND later? The dr said that the PET scan came back negative for any tumors in the lymph nodes and that the teratoma is usually benign. Also his abdomen came back clear. Only one nodule in his lung is active and has grown a fraction. I hope this dr knows what he is doing but he seems like a good oncologist
      Some of these things you mention are actually sound worrisome. Why the reduced doses of BEP? This treatment has been so well worked out, that deviations may not be suitable. Unless he is experiencing some adverse effects, there should be no reason to deviate from prescribed doses precisely because of the reasons you outline.

      An RPLND is necessary if there are residual masses post-chemotherapy, which brings me back to the point I brought up before: the results of the PET scan cannot be considered conclusive because false negatives from teratoma are plausible. Also, the doctor is mistaken that teratoma is usually benign. In males, teratomas are considered malignant because they have the potential to undergo malignant transformation into other kinds of tumors (sarcomas, adenocarcinomas, primitive neuroectodermal tumors, etc) which are far more aggressive and not-treatable with TC chemotherapy.
      "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


      • #18
        question

        What is the prescribed dosage so I can make sure they are treating my son properly? I just know that the affects of chemo has me considerally frighten. They have told me that my son could possibly need a blood transfusion at times as his cells could fall way below. Is that normal? Will he be hospitalized at times because of the chemo?

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        • #19
          Originally posted by sandy54 View Post
          What is the prescribed dosage so I can make sure they are treating my son properly? I just know that the affects of chemo has me considerally frighten. They have told me that my son could possibly need a blood transfusion at times as his cells could fall way below. Is that normal? Will he be hospitalized at times because of the chemo?
          Also how do they treat the teratoma which is less than 5%?

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          • #20
            also

            Is there a difference between a immature teratoma and a mature teratom? My son has a mature teratoma and that is why the dr is treating him with chemo for the embryonal carcinoma

            Comment


            • #21
              Originally posted by sandy54 View Post
              What is the prescribed dosage so I can make sure they are treating my son properly? I just know that the affects of chemo has me considerally frighten. They have told me that my son could possibly need a blood transfusion at times as his cells could fall way below. Is that normal? Will he be hospitalized at times because of the chemo?
              The recommended dosages are in the NCCN Guidelines.
              Originally posted by sandy54 View Post
              Also how do they treat the teratoma which is less than 5%?
              Teratoma is only treated with surgery. That's why the RPLND is done; in case there are residual masses after chemotherapy that could be teratoma.
              Originally posted by sandy54 View Post
              Is there a difference between a immature teratoma and a mature teratom? My son has a mature teratoma and that is why the dr is treating him with chemo for the embryonal carcinoma
              Immature teratoma is less predictable and more prone to malignant transformation. The chemotherapy is for the embryonal carcinoma, which is the more aggressive component.
              "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


              • #22
                Originally posted by sandy54 View Post
                I hope this dr knows what he is doing but he seems like a good oncologist
                I don't like this line.
                Are you able to seek out a second opinion?
                If your not perfectly confident in your doctor, change doctors.

                Your son should be able to handle chemo, it is really the nurses that will treat his side effects. I wonder why 4XBEP though? Seems high.
                Even with that he shouldn't need blood though.

                Tell us where you are, we can try to find someone local with experience.
                Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
                Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.

                Please see a physician for medical advice!

                My 2013 LiveSTRONG Site
                The 2013 Already Balders

                Comment


                • #23
                  Sandy:
                  I have the same concern as Fed about the reduced chemo levels. The standard protocol has been used with such great success that unless your son has a medical problem with the treatment it shouldn't be changed.

                  Blood transfusion aren't unusual but most guys don't need them. Your son should get a shot of nulasta after each round which help keep his counts up.

                  Don't worry about the RPLND. It won't be known if he needs that until treatment is done. If his nodes return to normal that particular operation can be avoided.
                  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


                  • #24
                    Sandy's son

                    Hello this is sandy's son, my mom wants me to better explain what is going on because she is very stressed out and comparing my situation to other peoples. I will not be given lower doses of BEP, the doctor was just trying to say that BEP is one of the milder chemos to go through saying that is is still bad but is not the hardcore treatments they used in the past. They have also done cat scans, PET scans, chest xrays, blood tests etc. The tests have revealed 2 small spots in my lungs and since my orchietomy one spot has grown by a small amount and is about the size of a dime or a little smaller so they are starting my chemo. everything in my abdomen is clear of anything except my lungs. The tumor markers from my blood tests where also extremely low and almost none existent and have had another test yesterday and have not got results of that yet. I have very high hopes and know not to let this get me down because one of the doctor even told me he is very optimistic since there have been far worse cases then mine and have gotten cured.

                    Comment


                    • #25
                      Are you sure it's 4xBEP and not 3xBEP or 4xEP? If your markers are low and there are just those two areas in the lung, I'd expect to hear three cycles of BEP, not four.

                      Hang in there, and keep us posted. Your optimism is well founded.
                      Scott, scott@tc-cancer.com
                      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 Foundation services for people facing cancer now. Please join me!

                      Comment


                      • #26
                        replying

                        Originally posted by Already Bald View Post
                        I don't like this line.
                        Are you able to seek out a second opinion?
                        If your not perfectly confident in your doctor, change doctors.

                        Your son should be able to handle chemo, it is really the nurses that will treat his side effects. I wonder why 4XBEP though? Seems high.
                        Even with that he shouldn't need blood though.

                        Tell us where you are, we can try to find someone local with experience.
                        We live in the San Bernardino area in California and his doctor is part of the Loma Linda University Hospital. Unfortunately we have limited insurance until January 1st when we go to Cigna. His medical is being paid by the State of California. The only problem I have with his doctor is the language barrier as he is from some other country. We really liked one doctor at the City of Hope but he requires his patients to be inpatients the entire week of chemo and my son likes being home

                        Comment


                        • #27
                          I am going to chime here, although the veterans here who know the whole deal have already explained it. As far as I am aware, chemo dosage is pretty much down to the persons height, weight etc. There is an exact medical formula that has been devised. It should *never* be deviated for (excepting clinical trials and tests). He is young and strong I assume? you have to remember a fair few of the veterans in this forum did BEP in their 50's and 60's (probably later too!). Ive had a very rough run with chemo, im fat, unhealthy, asthmatic and I am telling you the thought of chemo is a lot worse than the chemo itself.. it is tough though, but in the grand scheme its 3-6-9-12 weeks (depending of cycle) of ups and downs... and to be honest by the third week of the cycle you feel almost normal.

                          About DLCO questions raised, my Dr schedules them for me the last friday of each cycle to see the effects of bleo... mostly I think because I have chronic asthma. After the treatment whatever damage has been done (if any!) so a DLCO afterwards would just be for piece of mind (or you could do an Xray to see any dmg fibrosis etc, they did that for me when I was complaining of bad asthma during the cycle).

                          Sandy, you should request a secondary opinion. I also had a teratoma component with seminoma that was "mature". My Dr put me on chemo anyway with results seen. If it was chemo resistant then it has to be surgically removed. Also if they are worried about his low white blood count they could give him neulasta or neupogen (I think neulasta is preferred). Where I am treated each guy there for TC is given it on the saturday after the main week of treatment to boost white cells.. its free here, but not sure on the insurance/where you are.

                          My last point in a really long and hopefully helpful post is that although TC is common in men, as cancer goes its fairly rare. Make sure your dr is an *expert* in this field, and not just seeing 1 or 2 cases per year. Teratoma and carcinoma are not something you want a green oncologist treating (in my opinion). I do not want to sound condescending, for all I know your oncologist is world renown expert... my oncologist is considered the best in the country ... and I still got a second opionion.
                          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


                          • #28
                            I just wan't to re-enforce something Scott said. Normal treatment for good risk disease is 3XBEP or 4XEP. 4XBEP is used for far more advanced cases, you really want to try and avoid over treatment.
                            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


                            • #29
                              Originally posted by sandy54 View Post
                              We live in the San Bernardino area in California and his doctor is part of the Loma Linda University Hospital. Unfortunately we have limited insurance until January 1st when we go to Cigna. His medical is being paid by the State of California. The only problem I have with his doctor is the language barrier as he is from some other country. We really liked one doctor at the City of Hope but he requires his patients to be inpatients the entire week of chemo and my son likes being home
                              Here are some local options in Los Angeles, California:

                              Dr Sia Daneshmand.
                              Director of Urologic Oncology, USC Institute of Urology
                              USC/Norris Comprehensive Cancer Center and Hospital
                              Phone: (323) 865-3700
                              Fax: (323) 865-0120

                              Dr Daniel J. Lieber
                              The Angeles Clinic and Research Institute
                              2001 Santa Monica Blvd
                              Suite 560W
                              Santa Monica, CA 90404
                              Phone: (310) 582-7900


                              Sandy, and her soon to be healthy son:
                              Seeing another physician for expert advice does not maen you have to have the treatment there. Getting several docs to talk about your case will lead to a cure with the least amount of chemo necessary.
                              Your son's doc is right:

                              one of the doctor even told me he is very optimistic since there have been far worse cases then mine and have gotten cured.
                              But with less chemo..

                              Overall, I love your son's attitude, and he will beat this.
                              I was more advanced, and I was cured with 4xEP.
                              Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
                              Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.

                              Please see a physician for medical advice!

                              My 2013 LiveSTRONG Site
                              The 2013 Already Balders

                              Comment


                              • #30
                                Originally posted by Already Bald View Post
                                I agree with both Paul and Dadmo-
                                ask about lab work.
                                Also, you are correct that teratoma is chemo resistant, and would need to be removed surgically if present.

                                I have a harmless spot on my lung that has remained stable in 4 years of surveillance, in fact I never would have known about it without my TC related scans.

                                I also relapsed in the lungs, and chemo cured me.

                                I would suggest a second opinion at a center of excellence.
                                Best,
                                Joe
                                Did you have the RPLND before chemo or after? The dr said RPLND is not neccessary as chemo takes care of it? Is this true?

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