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  • My Radiation Story

    Hey guys, I just started radiation for IIa seminoma. I just figured I'd start my own thread for how my radiation treatments are going.

    Day 1 was fine during treatment. I got pretty excited because the radiation is painless and I didn't think I was going to have side effects. Boy was I wrong. By two hours after treatment I was feeling a little nauseous and then that built up over the next hour until I was hugging my toilet. I felt way better after but called my doctor for his advice. His prescribed my compazine and my awesome girlfriend went to grab it for me. I'm glad I called my doctor because while my girlfriend was gone I had another vomiting fit. I took the compazine and have felt fine since. I'm just really hungry.

    I'll update more as the days go by.
    11/16/16 - Something feels off,maybe I have a hernia
    11/23/16 - "You may have cancer"
    12/13/16 - "You most likely have cancer"
    12/21/16 - Left I/O followed by "You definitely have cancer"; 100% classic seminoma, multifocal with tumors at 2cm, 1.2cm, and 4mm, no vascular invasion, no LVI, and no spermatic cord invasion
    12/28/16 - CT scans reveals one suspicious para-aortic lymph node measuring 1.2cm; staged at seminoma IIa
    1/3/17 - Radiation therapy recommended as treatment from hospital tumor board
    1/23/17 - Started RT for 19 sessions
    2/16/17 - All done with radiation

  • #2
    Oh, no! Sorry to hear you had insta-nausea. I had nausea right after my first two days of brain radiation, too. My oncologist was puzzled by this as he said most people do not experience that. However, he said that seminoma tends to "pop" while undergoing radiation, releasing a lot of chemicals quickly into the body. While there is nothing dangerous and a popping seminoma tumor is good news, he said it can make you feel nauseous. Maybe that is what you have going on here. I felt better after the first few days and the nausea subsided!

    Glad compazine is working for you. Should that fail, zofran is another great and strong prescription anti-nausea. And Ativan worked great as a last resort (when all else fails). It is actually an anti-anxiety medication, but off label usage includes anti nausea. Just letting you know there is more your doctor can give you in combination with compazine should you need it.

    Good luck and keep us posted! It should get smoother later.
    9/27/2011 - Mass detected
    10/4/2011 - Left I/O; Seminoma; Stage I
    11-12/8/2011 - Radiation therapy
    2012 - 2013 - Surveillance
    2/6/2014 - bHCG 7.3, then 9.2
    2/10/2014 - Recurrence confirmed, CT scan detected a chest tumor: 7.1 x 5.6 x 8.7 cm in diameter. Also a lymph node 1.4 x 1.0.
    2/17/2014 - 3xBEP
    5/12/2014 - Tumor completely resolved
    9/12/2014 - New nodule on CT scan
    11/11/2014 - Nodule increased from 1.2 x 0.7 cm to 2.9 x 0.9 cm.
    12/8/2014 - HDC Autologous Stem Cell Transpant in Indianapolis
    1/16/2015 - Tumor completely resolve!
    3-6/2016 - started having severe and worsening headaches
    6/28/2016 - 9.8cm brain tumor detected; emergency brain surgery
    8/10/2016 - Radiation (6 weeks) to entire brain and spine to treat brain tumor (suspected leptomeningeal disease)

    Comment


    • #3
      (Way-back...) When I did my radiation. I had 2 / 3 days with sickness. I recall being told it was because (sometimes/some people) the radiation also "clips" the gut. I forget what anti-ematics I was given but they did the job.

      @akles - do you know how much radiation you are getting/being given? (just curious)

      Take care, DZ.

      Jan 2009: RHS (Seminoma) & RT
      Mar 2010: LHS (Embryonal Carcinoma)
      Sep 2010: Relapse & 3 x BEP
      Mar 2015: Five years "nut free"
      http://doublezeroami.blogspot.com

      Comment


      • #4
        Day 2

        Day 2 was actually yesterday, but I have some time to post about it this morning before my next treatment. Yesterday went much smoother. I got a call from the clinic saying they had a power outage the night before; so they had to push my treatment time to a few hours later than normal. I preferred that over adding another day to the end of my cycle though. I took my compazine about 1.5 hours before my treatment and didn't have any vomiting fits like I did on the first day. Although by 6 hours after taking the compazine, I was feeling a little nauseous and needed to take another. Today I'm going to try taking it 45 minutes before treating to see if that helps a little bit more.

        I also woke up with a little bit of a sore throat on one side of my throat. My throat has otherwise felt fine; I think I may have just slept with my head twisted in a funny position. If it persists for a few days I'll bring it up with my rad. onc.

        To answer some of your questions...

        Conor, I feel that you may be right about the seminoma "popping". My first day of nausea started to act about two hours after treatment and very quickly built up over the next hour. Yesterday was much better however. My nurse told me that if compazine stops working to tell them immediately and they'll switch me to Zolfran. She said they try compazine first because it typically works and is far cheaper than Zolfran.

        DoubleZero, the compazine they prescribed seems to be helping thus far. Modern medicine is pretty remarkable. Also, I cannot remember the exact dosage of radiation, but being seminoma IIa, it'll be somewhere between 30-35 Gy and I'm getting 19 total treatments. I think the last 3 or 4 treatments are supposed to be boosted targeted to the observed enlarged lymph node.
        11/16/16 - Something feels off,maybe I have a hernia
        11/23/16 - "You may have cancer"
        12/13/16 - "You most likely have cancer"
        12/21/16 - Left I/O followed by "You definitely have cancer"; 100% classic seminoma, multifocal with tumors at 2cm, 1.2cm, and 4mm, no vascular invasion, no LVI, and no spermatic cord invasion
        12/28/16 - CT scans reveals one suspicious para-aortic lymph node measuring 1.2cm; staged at seminoma IIa
        1/3/17 - Radiation therapy recommended as treatment from hospital tumor board
        1/23/17 - Started RT for 19 sessions
        2/16/17 - All done with radiation

        Comment


        • #5
          Good luck! Thank you for sharing your journey.
          17 year old Grant dx 12/21/16
          pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
          pre/o CT Scan 12/22/16 normal
          r/o 12/22/16
          Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
          PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

          -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
          2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
          BEP x 3
          Tumor makrers at start of Cycle 1 1/27/17 HCG 899.68 AFP 50.6
          Tumor markers at start of Cycle 2 on 2/17/17 HCG 5.96 AFP 10.2

          Comment


          • #6
            @akles, I know what you mean about the meds... The first couple of days I didn't take them because I was "okay", then all of a sudden (and I remember it very clearly - because I was driving at the time) I wasn't! After that meds *every* day!

            I had 20G over 10 days, here in the UK, they'd just finished trialling a lower dosage RT for stage 1, which I was, rather than 30G which was the norm.

            Jan 2009: RHS (Seminoma) & RT
            Mar 2010: LHS (Embryonal Carcinoma)
            Sep 2010: Relapse & 3 x BEP
            Mar 2015: Five years "nut free"
            http://doublezeroami.blogspot.com

            Comment


            • #7
              Day 3

              Went well again! Quick zap at the clinic and went to visit my parents for the afternoon and evening. Took my compazine 45 minutes before and I was able to eat about 1.5 hours after treatment without much nausea. I'll admit I don't feel 100%, but I'm not hovered over a toilet; I consider that a success. I was able to eat some spicy chicken in a sandwich for lunch and part of a steak and sweet potatoes for dinner.

              Double Z, yeah the low dose adjuvant radiation is the staple now for stage 1 seminoma. They'll do the same 20 Gy for me as they did for you, and then they'll give me a boost of about 10-15 Gy to the afflicted lymph node.
              11/16/16 - Something feels off,maybe I have a hernia
              11/23/16 - "You may have cancer"
              12/13/16 - "You most likely have cancer"
              12/21/16 - Left I/O followed by "You definitely have cancer"; 100% classic seminoma, multifocal with tumors at 2cm, 1.2cm, and 4mm, no vascular invasion, no LVI, and no spermatic cord invasion
              12/28/16 - CT scans reveals one suspicious para-aortic lymph node measuring 1.2cm; staged at seminoma IIa
              1/3/17 - Radiation therapy recommended as treatment from hospital tumor board
              1/23/17 - Started RT for 19 sessions
              2/16/17 - All done with radiation

              Comment


              • #8
                Days 4 and 5

                Sorry about the bunching of days. The site was acting up a couple days ago. Day 4 went about the same as 2 and 3. I still don't feel 100%, but with the compazine I definitely can manage. Day 5 was actually pretty good though. I don't know if it was some relief about making it through the first week or knowing that I get a couple days off, but I only had to take one dose of my anti-nausea meds to keep things under control.

                I also got a call from my medical oncologist. My AFP, HCG, and LDH were all normal before my I/O. However, at two weeks post surgery, my LDH became elevated. It went from 168 pre-surgery to 442 two weeks post-surgery. And then at 4 weeks post-surgery my LDH is still elevated at 468. He started off saying that he's not really concerned about the LDH. He stated that LDH is typically more elevated in men with more bulky or metastatic disease. My CT scan showed no bulky disease anywhere, so he believes it's unrelated to the cancer. He cannot explain why its elevated though. I know that exercise can release LDH, but I haven't really been doing much besides walking on the treadmill at a steep incline. Regardless, he won't take labs during radiation because the radiation will probably throw them off. But he did say that if my LDH doesn't start trending down after treatment, he may recommend that I do chemotherapy as well.

                Is there any other tests that I should be asking them to perform?
                11/16/16 - Something feels off,maybe I have a hernia
                11/23/16 - "You may have cancer"
                12/13/16 - "You most likely have cancer"
                12/21/16 - Left I/O followed by "You definitely have cancer"; 100% classic seminoma, multifocal with tumors at 2cm, 1.2cm, and 4mm, no vascular invasion, no LVI, and no spermatic cord invasion
                12/28/16 - CT scans reveals one suspicious para-aortic lymph node measuring 1.2cm; staged at seminoma IIa
                1/3/17 - Radiation therapy recommended as treatment from hospital tumor board
                1/23/17 - Started RT for 19 sessions
                2/16/17 - All done with radiation

                Comment


                • #9
                  Days 6, 7, and 8

                  Decided to bunch some more days because not much has changed. Everyday has been fine. Just a quick run to the local rad-clinic, 24 seconds of zapping, and I'm on my way. I have noticed that certain smells have started bothering me more. Even things I used to think smell pleasant are sometimes overpowering. I've just tried to avoid those things.

                  Other than that I haven't really felt much fatigue. I'm guessing that won't really set in until next week.
                  11/16/16 - Something feels off,maybe I have a hernia
                  11/23/16 - "You may have cancer"
                  12/13/16 - "You most likely have cancer"
                  12/21/16 - Left I/O followed by "You definitely have cancer"; 100% classic seminoma, multifocal with tumors at 2cm, 1.2cm, and 4mm, no vascular invasion, no LVI, and no spermatic cord invasion
                  12/28/16 - CT scans reveals one suspicious para-aortic lymph node measuring 1.2cm; staged at seminoma IIa
                  1/3/17 - Radiation therapy recommended as treatment from hospital tumor board
                  1/23/17 - Started RT for 19 sessions
                  2/16/17 - All done with radiation

                  Comment


                  • #10
                    It sounds like things are going well. Thanks for the updates and keep the course.

                    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

                    Comment


                    • #11
                      Interesting about sense of smell changing. Hang in there!
                      17 year old Grant dx 12/21/16
                      pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                      pre/o CT Scan 12/22/16 normal
                      r/o 12/22/16
                      Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                      PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                      -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                      2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                      BEP x 3
                      Tumor makrers at start of Cycle 1 1/27/17 HCG 899.68 AFP 50.6
                      Tumor markers at start of Cycle 2 on 2/17/17 HCG 5.96 AFP 10.2

                      Comment


                      • #12
                        Many kinds of inflammation can raise LDH. While it is sometimes a useful marker for TC, it is the least reliable. Make sure they keep an eye on it, but if it doesn't come down after radiation, I,d start looking for another cause of inflammation.

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

                        Comment


                        • #13
                          I've been having some tightness in my right calf and thigh. Not really painful but uncomfortable. I've tried to stretch more but it doesn't seem to be improving. I emailed my doctor to see if he thinks it could be an infection. That would explain my LDH and the leg discomfort. I already was checked for DVT and they said I was clear.
                          11/16/16 - Something feels off,maybe I have a hernia
                          11/23/16 - "You may have cancer"
                          12/13/16 - "You most likely have cancer"
                          12/21/16 - Left I/O followed by "You definitely have cancer"; 100% classic seminoma, multifocal with tumors at 2cm, 1.2cm, and 4mm, no vascular invasion, no LVI, and no spermatic cord invasion
                          12/28/16 - CT scans reveals one suspicious para-aortic lymph node measuring 1.2cm; staged at seminoma IIa
                          1/3/17 - Radiation therapy recommended as treatment from hospital tumor board
                          1/23/17 - Started RT for 19 sessions
                          2/16/17 - All done with radiation

                          Comment


                          • #14
                            Let us know what your dr. thinks. Sorry you are having right calf and thigh tightness.
                            17 year old Grant dx 12/21/16
                            pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                            pre/o CT Scan 12/22/16 normal
                            r/o 12/22/16
                            Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                            PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                            -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                            2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                            BEP x 3
                            Tumor makrers at start of Cycle 1 1/27/17 HCG 899.68 AFP 50.6
                            Tumor markers at start of Cycle 2 on 2/17/17 HCG 5.96 AFP 10.2

                            Comment


                            • #15
                              Update on the leg.

                              My doctor emailed me back and said that infection could be one explanation. Although he said that if it was a leg infection it would probably be an abscess or cellulitis. Either of those would have visible symptoms on the surface of my skin (which I do not). I also don't have a fever or chills, which also could rule out infection. He said to keep stretching the leg, but if it gets worse to let him know.

                              An LDH test is useless in the middle of radiation (as it would likely be elevated anyways). He did say that he could get a white blood cell count, and that if it was unusually high it could indicate an infection. As I've said before, it's not unbearably painful. More of a nuisance if anything. I'd rank it 1.5-2/10 on the pain scale. I plan on just keeping an eye on it over the weekend. It always feels better in the morning than in the evening so it could just be from overuse.
                              11/16/16 - Something feels off,maybe I have a hernia
                              11/23/16 - "You may have cancer"
                              12/13/16 - "You most likely have cancer"
                              12/21/16 - Left I/O followed by "You definitely have cancer"; 100% classic seminoma, multifocal with tumors at 2cm, 1.2cm, and 4mm, no vascular invasion, no LVI, and no spermatic cord invasion
                              12/28/16 - CT scans reveals one suspicious para-aortic lymph node measuring 1.2cm; staged at seminoma IIa
                              1/3/17 - Radiation therapy recommended as treatment from hospital tumor board
                              1/23/17 - Started RT for 19 sessions
                              2/16/17 - All done with radiation

                              Comment

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