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In third cycle of BEP and info for Dr. Einhorn please

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  • In third cycle of BEP and info for Dr. Einhorn please

    Greetings! I am so delighted to be connected to this wonderful and supportive community. Here is some relevant information:

    My son Tim (age 30) was diagnosed on 6/11/22, right O/I 6/23/22, non-seminoma, 80% embryonal carcinoma, 19% yolk sac, 1% choriocarcinoma
    AFP 365 (6/11), 113 (7/3, after surgery), 209 (7/19), 414 (8/1), 13 (9/6, after two rounds of BEP)
    CT Scan showed one lymph node at 7x13 mm on 6/11, grew to be 25x32mm on 7/31. BEP started on 8/1/22

    My questions for the community are:

    1. Given this etiology and pathology, what do you think of the likelihood of complete cure after three rounds of BEP? The next CT-scan is scheduled for late October.

    2. His oncologist claims that he does not need to do the cancer marker blood test at the end of the third cycle, that he can wait for four weeks after. And I feel uncomfortable with this, given everything I have read in this forum. What do you think?

    2. Does anyone have any recommendations as to what one can do to avoid relapse? Has there been any definitive study regarding diet and exercise?

    3. I am hoping to write to Dr. Einhorn for a second opinion after the next CT-scan, but cannot find his email. Does anyone have his email? I see that many of the people on this forum have consulted him in the past.


    Many thanks in advance for your insights!

    Samantha


  • #2
    Hi Samantha,

    1. I would expect the BEP to do wonders. It will be a matter of how much the node shrinks on if a RPLND will be advised after the BEP but there is no reason to expect nothing but a positive outcome.

    2. The AFP appear to be responding so not sure I would be worried about getting them right at the end of the cycle or not. I think the CT will dictate further needs but then again the tests are easy so no harm in doing them either I suppose.

    2.2 To my knowledge there is nothing specific to do that will affect the risk of relapse. Living a healthy lifestyle is never a bad idea but lifestyle has no effect on relapse that I know.

    3. Dr. Einhorn's email is [email protected]

    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 [email protected] if you would like to chat privately so as to avoid any delays.

    Comment


    • #3
      Dear Mike and all:

      Thank you for your thorough and helpful reply, Mike!

      I am also wondering, short of the CT scan scheduled for October, whether anyone in this group knows about the likelihood of needing RPLND when the pathology for the tumor that was taken out did not have any teratoma? I understand that teratoma does not respond to chemotherapy, but the other types of cancer cells should. My son's blood markers are "normalizing," according to his urologist. Latest blood test on 9/20 shows AFP 5.8, HCG 2, LD258.

      Also, from reading the past posts, it seems that some people had CT scans three times a year in the first two years, while others had 2 times a year. Given that non-seminoma is fast growing, does anyone have any advice which way to go?

      Many thanks!
      Samantha

      Comment


      • #4
        For nonseminoma, it is usually recommended to have an RPLND if the nodes after chemotherapy are equal to or greater than 1 cm. If node are less than 1 cm then some places still recommend RPLND while others watch and see. It is an area of debate among experts. The post-chemo CT will determine the next steps and ultimately the timing of things will go from there.

        Anytime there is nonseminoma present in the original pathology there is always the potential for for teratoma to be found in the abdomen. With seminoma this isn't the case. It is just the ways the cell differentiate.

        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 [email protected] if you would like to chat privately so as to avoid any delays.

        Comment


        • #5
          Thanks, Mike, I hope ardently that my son will not need RPLND. Will be anxious for the next month until the CT in October. Do you think it is best to get the CT earlier, rather than wait for four weeks?

          Comment


          • #6
            Originally posted by SamanthaS View Post
            Thanks, Mike, I hope ardently that my son will not need RPLND. Will be anxious for the next month until the CT in October. Do you think it is best to get the CT earlier, rather than wait for four weeks?
            Each facility is a bit different in their timing of post chemo CT scan timing. I frequently see 4-6 weeks. The NCCN Guidelines state within 1 month. Some places do the CT earlier. If it were me, I would not be alarmed with a 4 week timing. If you are going to see Dr. Daneshmand, you can always ask him or his office what timing they prefer. I'd be interested in what he says too, so if you find out, then let me know.

            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 [email protected] if you would like to chat privately so as to avoid any delays.

            Comment


            • #7
              Reading one of the posts in the forum by someone who quotes from Dr. Einhorn who says that at Indiana University they do the CT-scan either during the last cycle of chemo or immediately after in order to determine the course of action earlier rather than later. I have written to Dr. Daneshmand, and I will share what he says. In theory, 9 weeks of chemo should mean that the problematic node must have shrunk if it is not teratoma, right? I don't see any drawbacks in doing the CT-scan earlier.

              Comment


              • #8
                Yes, even each center of excellence is a bit different in their timing and there is no perfect answer as each center has excellent outcomes.

                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 [email protected] if you would like to chat privately so as to avoid any delays.

                Comment

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