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  • I really need some thoughts

    I'm new (24 y/o male) to this forum after checking it out for sometime. My background is I had a right orchiectomy at the end of August. A month later my AFP dropped from 209 to 4.2 (which was normal). Five weeks after that in the begining of November the AFP went to 63. Had several more chest xrays and another cat scan to confirm no Metastatis to the lungs. . .only thing that showed up on my FIRST catscan after the R/O was two lymph nodes on the LEFT side of the abodomen that were slightly enlarged. .one was 1.2cm and the other 1.5 cm. Doctor says it may be from the surgery. . . Well the second cat scan done right after the AFP came back 63 still showed the two lymph nodes, but they remained essentially the same size.

    Thursday 2/2/05 I start my fourth day of cycle three of EP. We are shooting for only 3 x EP cuz doc says i have low stage disease. I just had my AFP and HCG blood tests done after cycle two - which i still do not have the results back yet. I'm having a hell of a time dealing with sitting in the room for 4.5 hours a day. I get so nervous and worked up its torture.

    My question is: is it normal to feel some discomfort from the lower back on one side during this phase of chemo? Do you guys think that I should be okay based on what i have described for my background after 3 x EP?
    Diagnosed August 2005
    R/O August 2005 AFP 210

    4xEP beginning December 2005
    End Feb/March 2006 AFP 4.6
    April 2006 AFP 22 and rising

    Tandem Stem Cell Transplant 7/06 - 9/06
    December 07 AFP = 3.3
    December 07 CT = Clear!

    15+ months remission

  • #2
    The pain you are feeling is probably a combination of chemotherapy, your increased kidney fuction due to drinking alot of fluids to flush the chemo out,sitting in those chairs for a prolonged period of time(you would think they would get more comfortable chairs ) and the pysical trauma of having cancer...I have usually heard that when patients undergo EP it is usaully for 4 rounds --If your afp doesn't drop then you may end up with 4xEP ...If the lymph nodes remain swollen then the DR's will probably suggest the RPLND.. Hopefully the last round of EP will cure you....GOOD LUCK!!!! DON
    Moffitt Cancer Institute
    CANCER SUCKS
    Diagnosed/Left I/O 9/18/2004--Non-Seminoma/Stage IIIC--3X B.E.P chemo--3X T.I.P. Salvage chemo---Abdominal [email protected] 34cmX 24.5cmX 17.5cm---4/19/2005 --RPLND/Left Kidney,8 1/2lb Abdominal tumor,42 nodes removed---7/16/2005 Remission/Surveillance---Severe Peripheral Neuropathy--

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    • #3
      tccancercop:
      If your getting anxious during the chemo they should be able to give you something to help you relax. Four rounds of EP is common so you may get one more if your numbers don't come down. The swollen lymph nodes will have to be delt with, if they don't return to a normal size you may indeed face an RPLND.
      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.

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      • #4
        I've never heard of 3xEP and would ask lots of questions about it. I think you'll need a fourth round.
        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


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        • #5
          My oncologist had a patient who was requesting to skip EP cycle four, because he was having an excruciating time with the chemo. The doctor e-mailed Dr. Einhorn to ask his opinion. Einhorn of course said, "We would have added Bleomycin, so he wouldn't need a fourth cycle."

          In my case, a PET scan after cycle two showed no tumors, so I probably would have been fine after three, but, as tough as round four was, it's wonderful to have the extra insurance that the cancer is all truly gone.
          Last edited by rlhawk; 02-02-06, 06:24 PM. Reason: Corrected typos
          Left I/O 5/9/05, 100% Embryonal Call Carcinoma, Stage IIIa, Laparoscopic RPLND 7/19/05, 4X EP 9/05-11/05

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          • #6
            Ep

            I too have only heard/read about 4xEP, so just hang in there...it will be over before you know it and those nodes WILL behave! Keep us posted on your progress.

            -Doug
            Doug R.
            Pure Embryonal Carcinoma
            Stage IIa
            Left I/O 8/25/05
            Chemo 3xBEP Starting 10/31/05

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            • #7
              I know how hard it must be for you to sit there thru chemo sessions, I sat with my son from about 9-3 everyday, and he was going out of his mind just sitting there...they did give him something for anxiety and to help him sleep sometimes, and he did get thru it and so will you....Chris also had low grade disease, AFP around 40 when he started chemo, with enlarged lymph nodes, and he had four rounds of EP.....and surgery to remove teratoma...keep in touch...Mary Ellen

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              • #8
                Well I have only Friday to go. . .thank god! I'm still kinda hoping that only 3 x EP is needed and will solve everything (i'm hoping). Doctor eliminated the Bleomycin because he believed at my age it would be not beneficial and secondly i presented no metastasis to the lungs (or any other part) in which he believes that bleomycin is best given to those who had lung metastasis. Also, the bioposy from the Orchiectomy stated it had NO spermatic invasion -- if that helps any!

                After this cycle we are going to check my BHCG and AFP again to look for what he calls stabilization of the blood. . .if we have that then surveillance is next!

                If it come to worse, and he recommends another cycle of chemo then i'm gonna ask about doing only three days instead of five because of my stage.

                I don't understand the major benefits of having 3 x BEP vs having 4 x EP when I have no metastasis to distant organs.

                Also reading dosages i noticed that 20mg/m2/ daily of cisplatin is normal, but noticed on my order sheet its 37 mg/m2/daily and the etoposide is slightly higher than standard doses. Doctor did mention that i was on a high dose schedule to increase the chances of 3 x EP doing the job. Any thoughts on having higher doses of this stuff from the get-go??
                Last edited by tccancercop; 02-02-06, 07:57 PM. Reason: New INfo
                Diagnosed August 2005
                R/O August 2005 AFP 210

                4xEP beginning December 2005
                End Feb/March 2006 AFP 4.6
                April 2006 AFP 22 and rising

                Tandem Stem Cell Transplant 7/06 - 9/06
                December 07 AFP = 3.3
                December 07 CT = Clear!

                15+ months remission

                Comment


                • #9
                  Not sure

                  tccancercop, I am not sure about the 3xEP, or the higher dosages to reduce the cycle duration. I do know that allot of research has gone into the treatment protocols for TC, and has proven to be very successful. I do see that your AFP went back up to 63 and you quoted "I don't understand the major benefits of having 3 x BEP vs having 4 x EP when I have no metastasis to distant organs" Well with the AFP going back up and the source of the cancer removed that would indicate distant metastasis. I would question where the information came from to your oncologist. I for one would like to know. Also, I had so much help with my Wife joining me during my treatments. We would play cards, or just watch some TV but having a loved one there with you makes you feel so much more relaxed. As for the back pain, I probably had them before TC and still have them now. I think you may notice every little ache and pain now, and every little bump or lump. It is probably nothing, but make sure to tell your DOC. Good luck, you are close to the finish line.
                  Last edited by Larry B.; 02-02-06, 09:11 PM.
                  Diagnosed 7/5/05, Rt. I/O 7/29/05, Nonseminoma Stage IIa, Started 3XBEP 9/06/05 changed to 4XEP due to reaction from Bleomycin. Currently surveillance.

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                  • #10
                    I don't think it's a good idea to be tinkering with well-proven treatment protocols. Since you did have metastasis and aren't receiving bleomycin, you should have 4xEP. I'm pretty sure if you contact a testicular cancer expert, that's what you'd be told. I don't understand the rationale behind delivering more faster.

                    Also, remember that with distant metastasis, the standard treatment is often 4xBEP.

                    As for the original pathology report, absence of vascular or lymphatic invasion is no longer relevant. All that tells you is that the risk of metastasis should have been lower, but it occurred anyway.
                    Last edited by Scott; 02-02-06, 09:32 PM.
                    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!

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