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  • Post Chemo Advice Regarding Active Surveilance/RPLND

    Hey all

    I am 29 year old, who was diagnosed with TC in February, below is my exact diagnosis. On May 10th I finished 3x BEP, and just had my first scan post Chemo last week. As you can see from the CT scans it has been shrinking, but isnt the magic number <1CM? Would RPLND be something that I would have to do, and or has anyone had instances where it takes some time for it to shrink all the way to that magic number? Secondly, my concern is if it takes time to shrink or doctor suggests surveillance, could it spread to other areas during that time? Lastly, I had a lung nodule, which hasn’t changed, and doctors most likely say it could be from an infection, any concerns there?

    Diagnosis
    - Mixed germ cell tumor, stage IIB - Mixed germ cell tumor‐ 90% seminoma, 10% embryonal ﴾pT1b N2 M0 S0 possible IIIA 5 mm lung nodule

    CT Scan on Lymphnodes
    - Pre Chemo: 5.0 x 2.4 CM
    - After Cycle 1: 3.8 x 1.6cm
    - First Post Chemo Scan: 3.2 x 1.4cm


    AFP
    - 2/25: 2.1, 3/3: 2.3, 3/22: 5.5, 3/29: 7.9, 4/5: 3.7, 4/12: 11.7, 4/15: 7.6, 4/22: 7.1, 4/22: 7.1, 5/3: 20.7, 5/10: 10, 5/17: 6.8

    LDH
    - 2/25: 192, 3/3: 181, 3/22: 166, 3/29: 252, 4/5: 222, 4/12: 229, 4/15: 120, 4/22: 241, 5/3: 197, 5/10: 143, 5/17: 187

    HCG
    - 2/25: <0.6, 5/3: 6.5, 5/10: 0.8, 5/17: 0.6







  • rpk5078
    replied
    Thanks Mike and Dave. I will further update once I have the repeat bloodwork on Monday, given the unusual high HCG. On the one side its fantastic the lymph nodes are shrinking, and on the other, its like "its still in my body, even if it may be necrotic". Appreciate the support.

    Leave a comment:


  • Davepet
    replied
    Thanks for explaining my shorthand, Mike

    Leave a comment:


  • Mike
    replied
    The 1 cm cutoff if just based on odds of the node to contain active cancer, teratoma or just fibrosis/scar tissue. T is testosterone and MJ is marijuana.

    Mike

    Leave a comment:


  • rpk5078
    replied
    Whats T and MJ? I asked the Onco about that 8.6, he said that it would be checked again in a week. Said its possible for some other reason reasons. And I was actually curious when they say <1cm is the magic number, is it at the individual lymph node or the total mass. Based on my doctor, my two nodes together are around 2.9cm, with one around that 1cm, and the other around 1.8 cm size.

    Leave a comment:


  • Davepet
    replied
    When will they redo bloodwork?

    Also note that low T and MJ can cause hcg to rise

    Leave a comment:


  • rpk5078
    replied
    Thanks. So I had my follow-up today with the Onco. They said to continue monitoring instead of RPLND and wait to do the next scan in 3 months given its continued to shrink and predominant seminoma component. Here is also the update blood work. What does HCG signify, thats the only one that spiked out of no where. I am worried about that plus that the next scan isn't till 3 months from now.. Any input would be helpful.


    AFP
    - 2/25: 2.1, 3/3: 2.3, 3/22: 5.5, 3/29: 7.9, 4/5: 3.7, 4/12: 11.7, 4/15: 7.6, 4/22: 7.1, 4/22: 7.1, 5/3: 20.7, 5/10: 10, 5/17: 6.8, 6/7: 6.3, 7/19: 3.6

    LDH
    - 2/25: 192, 3/3: 181, 3/22: 166, 3/29: 252, 4/5: 222, 4/12: 229, 4/15: 120, 4/22: 241, 5/3: 197, 5/10: 143, 5/17: 187, 6/7:185, 7/19: 155

    HCG
    - 2/25: <0.6, 5/3: 6.5, 5/10: 0.8, 5/17: 0.6, 6/7: 0.8, 7/19: 8.6



    CT Scan on Lymphnodes
    - Pre Chemo: 5.0 x 2.4 CM
    - After Cycle 1: 3.8 x 1.6cm
    - First Post Chemo Scan: 3.2 x 1.4cm
    - Second Post Chemo Scan: 2.9-3.0cm x 1.3cm (My estimate)

    Leave a comment:


  • Davepet
    replied
    If I were you I'd talk to my primary doc, this could be something unrelated to chemo

    Leave a comment:


  • rpk5078
    replied
    Hi Dave - I would say probably mid June. Its just a full day of fluctuation in stool size and constipation with some stomach cramps and feeling of bloatness. Onco said it could just be the gut getting back to normal? does it take over two months for gut to get back to normal, do I need to be patient?

    Also I had my Second post chemo second scan today. On the Good news side, the lymph node in question are stable/slightly decreased. I have my follow-up with Onco on Monday. See updated below, any thoughts on continued surveillance or RPLND.

    CT Scan on Lymphnodes
    - Pre Chemo: 5.0 x 2.4 CM
    - After Cycle 1: 3.8 x 1.6cm
    - First Post Chemo Scan: 3.2 x 1.4cm
    - Second Post Chemo Scan: 2.9-3.0cm x 1.3cm (My estimate)

    The tumor boards rec after first post chemo scan was surveillance given its significant shrinkage pre chemo, and majority seminoma component. Given that its shrunk a little/stable, and its below/around 3cm.

    As always grateful for your support.

    Leave a comment:


  • Davepet
    replied
    It's been too long for me to recall, but I can't recall it being mentioned as a widespread problem. Keep in mind, not everything is going to be connected to your cancer or it's treatment. How long has this been going on?

    Leave a comment:


  • rpk5078
    replied
    Thanks Dave. Offtopic, but has anyone dealt with this after chemo. Its been about 7 weeks, and have had stomach cramps, bloatness, and looser stool, especially all in the morning right after I wake up. Ive started probiotic, but would love any other recommendations from anyone? Is this expected, as my gut goes back to normal.

    Leave a comment:


  • Davepet
    replied
    You've had 3xBEP, the chances of having any live cancer are very low, waiting a month & getting another CT will tell mus what is going on, odds are good they will be smaller Seems like a good plan to me.

    Leave a comment:


  • rpk5078
    replied
    So I found out the board recommends to continue surveillance until the next scan (on July 16th), rather than do RPLND now, given it has been shrinking. Would you guys suggest going with that, or getting a second opinion? My concern is could it spread while doing surveillance?

    Leave a comment:


  • Mike
    replied
    If you are at MSKCC, then Dr. Joel Sheinfeld is about as good as they get and one of the handful of surgeons I would allow to perform an RPLND on me, if I needed it.

    Mike

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  • Davepet
    replied
    Sorry, rpk, I don't recall the size, but I think my original tumor was smaller than 3cm so it wouldn't really be useful.


    Leave a comment:

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