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  • #16
    The sooner they start chemo, the better! Good luck with it, Deliverator... Chemo is not much fun, but it's the result that matters!!
    July 2016 - Left I/O
    December 2016 - BEPx3
    All clear for 1 year!

    My Testicular Cancer Support Kit
    First Oncologist Visit Checklist
    Simplify Cancer Podcast

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    • #17
      Hey everyone, big update today. I saw may new oncologist in the NIO and I'm already far more satisfied with him than my previous doctors. He immediately confirmed what I suspected and many have said on this forum as well, that this can't be a pure seminoma with elevated AFP. He has requested some lab stuff from the previous hospital so they can do their own pathology report on it and find out what it really is.
      Aside from that, they did another blood test which is pending, and a chest xray which was negative. He also looked at my CT images and he didn't find the liver weird and also said that the tumor is probably bigger than what the report says and that it also missed one(!), also in the retroperitoneal lymph nodes, so previous hospital is full of sh*t. Luckily for me, this doesn't change the treatment plan. I've been restaged to stage 2B which was a huge relief for me because I've been worrying about getting hit with 3C or something which I guess was an irrational fear but I can finally stop worrying about that.
      I'm scheduled to start chemo next Monday, doc said we're going with BEPx3 initially, then we'll see if I need more. I'm honestly just glad I can finally begin treatment as it's been over a month since we first noticed the elevated AFP.
      Also, really appreciate the support from everyone here, it really means a lot!

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      • #18
        Glad to hear that they are taking good care of you and re-looking at things. Really glad that they are not worried about the liver at all. Do you have any idea on what they missed as far as the other node? Let us know what your new AFP is as well. With a node greater than 5 cm and the AFP>1000 I am not sure if that is stage IIb or if it might be a higher stage but I personally would not be concerned with the "stage" itself. They actually will look at some of the factors to determine a prognosis of advanced disease (again, a lot scarier than it sounds). With good prognosis they usually go with BEPx3 (or EPx4) and with intermediate and poor prognosis, they usually go with BEPx4. With your AFP right at the cutoff of 1000 it may make a difference if it comes back even higher and may be worth asking your doctor about as usually the determination of 3 or 4 rounds is made before chemotherapy starts. You should know a bit more with the new labs too because where you are at now appears to be right on the borderline of things and so treatment plans may differ a bit from doctor to doctor as they are not completely absolute.

        It sounds like things are going well to start on Monday and while the chemotherapy is not fun it is done with curative intent and you will get through this. It is just 9-12 weeks of dealing with the chemotherapy that you have to go through.

        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

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        • #19
          They missed the existance of a second tumor if I understood what my doctor said correctly. It's smaller than the one they found but it's there. He didn't specify further than that yet. He did say that they've got higher quality imaging than what I've brought from the previous hospital so that will probably be redone at some point. Probably not soon though because I'm already getting an extra dosage of unnecessary radiation due to the fact that previous hospital actually forgot to order a chest CT, so I had 2 CT scans within 2 weeks. I still can't believe they can just forget something like that but here we are.
          I probably worded this part poorly but the number of rounds I'm going to do is going to be determined before starting chemo. He just said it's going to be at least 3.

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          • #20
            Hey guys, I was checked into the hospital today and started chemo. They decided to do BEPx3. Last week's bloodwork showed my AFP at around 1600 which my doctor said was a minor increase compared to October's roughly 1100. So far, the worst thing was them installing the IV which took two tries and I almost fainted the second time because I caught a glimpse of my own blood.
            For now I feel good though and am preparing for my finals as long as I still can.

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            • #21
              hi Deliverator, I send you a private message, please check.

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              • #22
                Good luck!
                6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                7/7/15: bHCG 56, AFP 42, LDH 322
                7/13/15 - 9/18/15: 4xEP
                10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                4/20/16: RPLND @ IU - teratoma only!
                3/29/2018 all clears up to this date!

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                • #23
                  Thanks!

                  Another tiny update, it's been decided today that I'm doing BEPx4 afterall due to the rise in AFP. Chest CT results are in, family member picked it up since this was still at the previous hospital, she said they found some micronodules or something which are apparently not abnormal, I didn't really understand over the phone but official conclusion is no evidence of metastasis. I don't think it would make much of a difference at this point anyway since I'm already doing 4 rounds of chemo.

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                  • #24
                    Good luck, man!! You'll have ups and downs during chemo, but it's result that counts... Take care and ask your specialist and nurses if you have any concerns!
                    July 2016 - Left I/O
                    December 2016 - BEPx3
                    All clear for 1 year!

                    My Testicular Cancer Support Kit
                    First Oncologist Visit Checklist
                    Simplify Cancer Podcast

                    Comment


                    • #25
                      Thanks a lot!

                      So I'm done with the first week plus day 8 bleo. I've been given 5 injections (1 each day) to self-administer at home for my white blood count. So far, I just can't bring myself to do it. How bad would it be to delay this a day? I could get someone to do it for me tomorrow but I'm really struggling with it alone.

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                      • #26
                        Hi Deliverator. I am not a medical professional, but was charged with dispensing my husband's post-chemo Neulasta/Neupogen, and I would really encourage you to do it as prescribed. Even when his shots were given well within the time range prescribed, but at different points during that window, we still saw differing impacts on his WBC (so surely there were other factors at play, as well). And since this will get harder on your body as the cycles continue, we found it best to try and stay ahead of things. Plus, it being flu season, you're going to need that infection-fighting army ready to go! You already have all of the tools you need to do this - you are stronger than you know! Tell that syringe what's up!

                        PS - my husband received lots of the belly shots via the pinch method, and then four months into everything, a nurse tried the stretch method on him. He now swears by the stretch.

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                        • #27
                          Whatever they gave me to inject, the needle was pretty small & practically painless.My advice is to just go for it, I think you'll be surprised.

                          Dave
                          Jan, 1975: Right I/O, followed by RPLND
                          Dec, 2009: Left I/O, followed by 3xBEP

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                          • #28
                            also, don't take any after the prescribed last injection date without first consulting your doctor. I know with the single injection neulasta, the prescribing information specifically says that you cannot take it less than X days before your next chemo infusion. Neupogen may be similar.
                            6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                            6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                            7/7/15: bHCG 56, AFP 42, LDH 322
                            7/13/15 - 9/18/15: 4xEP
                            10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                            10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                            4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                            4/20/16: RPLND @ IU - teratoma only!
                            3/29/2018 all clears up to this date!

                            Comment


                            • #29
                              Hey everyone, I'm officially done with my first cycle of BEP today! I get a week to rest now.
                              Unfortunately, my white blood cell count plummeted and I've been given another 5 injections to combat that. This time I'm to inject myself twice a day and so far there hasn't been a problem with it like last time (hurts a bit more though).
                              I've also had a sudden fever on the 24th in the night (38.9C/~102F) which was gone completely by the morning so I foolishly didn't go to the hospital until today. Doc told me to come next time even if the fever goes away so I'll definitely do that.
                              One last thing, my nurses are consistently having issues inserting my IV lines, so far it took them at least 2 tries but usually 3 to get it in. I've never experienced similar problems previously when getting CT scans and such. Is there something I can do to help with this? Like, they told me to drink more and eat something before coming and I made sure to do that but it didn't help. At this point, I'm worried that the increased stress I have before IVs due to fear of these failures may be contributing to the problem.

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                              • #30
                                Hi Deliverator. Read your thread and happy to hear you're through your first round! My son had regular fevers after chemo and needed Tylenol to keep it down. Also, the Neulasta can cause some nasty side effects and my son's oncologist recommended regular Claritin which was effective in keeping the pains minimal. One piece of advice about ivs. Make sure you are well hydrated as dehydration makes it harder to start an iv. You need to drink at least an hour before you're expected at the hospital. Rest up before round 2 and let us know how you're making out!

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