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  • Crowds during/after chemo

    My husband was recently diagnosed with tc, we are curious what your dr.s told you about being in crowds during bep chemo and how long after until you could be in a crowd.

    They haven't decided how many rounds he will need yet, and we plan on going to a convention followed by a family reunion in November.
    Crystal wife to Jonny (30) diagnosed

    1/28/2015: got sick after dirt bike riding, right testicle swelling
    5/2015: saw a dr who said it was torsion but since the swelling "went down" we shouldn't worry
    02/2017: swelling increased tremendously no longer "went down"
    07/24/2017: had realistic dream telling him it was cancer, went to ER, was told it was never torsion and the tumor was cancer
    Afp: 4759
    Hcg: <1
    Ldh: 258
    07/28/2017: right orchiectomy ct scans all clear
    08/04/2017: nonseminoma stage 1 no invasion 40% ec 60% yolk
    08/28/2017: pet-ct and brain ct due to headaches
    Afp: 11.8
    Hcg: <2
    Ldh: 138
    09/06/2017: pet and brain clear
    09/18/2017 afp down to 2.9! Stage 1a
    10/02/2017 1xbep starts

  • #2
    The main issue is your husband's immune system. This will crash during chemo and as such puts him at risk from basic infections which he won't be very able to fight - and that can be dangerous. I know of 2 / 3 people who had to be emergency hospitalised because of that. But on the other hand, there are a lot of people who continue with some / much of their daily life. Surf this board long enough and you will find many who kept up their studies/college/school.

    My choice was to keep away from as much of the general public as possible. I still went out, but tried to stay away from people / enclosed spaces.

    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


    • #3
      I stayed out of work and places with lots of people (work, trains, restaurants) during chemo and I was fine. 3xBEP is 9 nine weeks and that wasn't a problem for me... But it's up to you of course! A mate with TC went to a wedding and he was OK.

      Comment


      • #4
        The other factor is nausea and energy. During the 2nd and 3rd round he may not have the energy or desire to go to a convention/reunion anyway. I know my 3rd and 4th rounds it was pretty much all I could do to force myself to get up off the couch and take a walk around the block. There was no way I was going to a convention during round 3 or 4, even if I wanted to. The first 2 rounds I had more energy, but I still tried to avoid crowds and was extremely diligent about hand washing, germs, etc.
        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!
        9/18/2017 all clears up to this date!

        Comment


        • #5
          Ha biwi... I'd forgotten about the "old man shuffle" I used to force myself to do "walking" my dog during my 2nd and 3rd rounds! And you're right (at least for me) - that was pretty much all I could manage.

          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


          • #6
            Please describe your husband's case. Is it already certain he will need chemo? (IE, his CT scan shows enlarged nodes)

            If so, whether it would be a good idea to be in large groups depends on the timing of his chemo vs the event. If his white counts are low, it's probably best to not chance the event.

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

            Comment


            • #7
              His pathology report says :

              10 cm mixed germ cell tumor with extensive area of hemorrhage and necrosis. Spermatic cord not involved.
              Testicle moves freely and appears intact.
              40% embryonal 60% yolk sac, involves tunica albuginea not tunica vaginalis, Margins clear, no lvi, no regional lymph nodes. Possible epididymis. Difficulty differentiating solid variant yolk sac from embryonal , the estimated volumes of the two tumor types are somewhat subjective.

              His pre-op (7/24) markers:
              Afp 4759
              Hcg <1
              ldh 258

              7 weeks post op (8/28)
              afp 11.8
              hcg <2
              ldh 138

              all scans (pet-ct, ct chest abdomin and brain) all clear
              oncologist said 1 round for sure, wasn't happy with afp still being high so will tell us on 9/20 wether it is 1a or 1s, which determines 1 round or 3 rounds
              Last edited by Addictedangel; 09-13-17, 02:15 AM.
              Crystal wife to Jonny (30) diagnosed

              1/28/2015: got sick after dirt bike riding, right testicle swelling
              5/2015: saw a dr who said it was torsion but since the swelling "went down" we shouldn't worry
              02/2017: swelling increased tremendously no longer "went down"
              07/24/2017: had realistic dream telling him it was cancer, went to ER, was told it was never torsion and the tumor was cancer
              Afp: 4759
              Hcg: <1
              Ldh: 258
              07/28/2017: right orchiectomy ct scans all clear
              08/04/2017: nonseminoma stage 1 no invasion 40% ec 60% yolk
              08/28/2017: pet-ct and brain ct due to headaches
              Afp: 11.8
              Hcg: <2
              Ldh: 138
              09/06/2017: pet and brain clear
              09/18/2017 afp down to 2.9! Stage 1a
              10/02/2017 1xbep starts

              Comment


              • #8
                Sorry to welcome you here Crystal. First, glad his numbers went down after Orchietcomy, and intial CT Scan was normal. If your Dr. draws blood at the 9/20 appt., also ask about another CT Scan if AFP has not normalized. Only sharing as my son orginally had an intial clear CT same timing, his markers (all of them) were not normalizing 4-5 out, and repeat CT Scan showed spread.
                Praying that the AFP has dropped further.
                Anyway, during chemo if a patient becomes Neutropenic (low WBC) than viruses, bacterial infections, etc can really do a number. If your husband's counts are not extremely low, than he can wear a mask and avoid handshakes, etc. Your Oncologist should advise though.
                My son was under 18 and his Pedi Oncologist placed him on homebound school during treatment. That said his High School has around 2,000 students and it was January-March with Mono, Flu, Gastro bug, Hand Foot Mouth, more stuff floating aorund the county schools (they even closed school for a few days due to all the illness).
                17 year old son 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 1/27/17
                Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                Comment


                • #9
                  Hi Crystal,

                  I am not sure where your husband is being treated and the AFP numbers next lab draw may shed some light on the situation. If however, the AFP is still in the 11 range then I would ask my oncologist if it is possible that despite the levels being higher than the laboratory normal range if the number isn't indeed still normal. I may even present the oncologist with this commentary from Dr. Einhorn at Indiana University which discusses this exact kind of situation with the AFP http://ascopubs.org/doi/pdf/10.1200/JCO.2014.56.0607

                  Unless, I had significant rises in the AFP or other evidence of spread, I would not be wanting to go through BEPx3 without having a testicular cancer expert weigh in on my case. There is a list of experts our friends at the TCRC keep at: http://tcrc.acor.org/experts.html

                  I understand the logic behind BEPx1 if indeed it is stage I and not stage Is but I also hope that the oncologist spoke to you about the option for surveillance as well if it is stage I as I would guess that most experts would say that without LVI he would be considered lower risk for relapse.

                  Keep us posted.

                  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


                  • #10
                    Here is part of what the Testicular Cancer Resource Center dictionary ( http://tcrc.acor.org/dictionary.html#GlossA )has to say about AFP:
                    The serum half life of AFP is 5 to 7 days, which implies that elevated levels of AFP should fall by one half of the initial level per week and should probably return to normal within 25 to 35 days after surgery if all of the tumor has been removed. The higher the level, though, the longer it will take to return to normal. Please note that AFP is normally less than about 5 ng/ml, but cancer cannot be assumed until it is over 25 ng/ml. Also note that a very small number of people have a naturally high level of this protein in their blood (though less than 25) even though they do not have cancer.
                    Bold text by me.

                    He is 31 days post I/O, assuming his AFP stayed at 4759 until the IO (it probably did not over those 4 days) than his AFP at 5-7 days post op should have been at 2380, 5 more days,1190, 5 more 595, 5 more 298, 5 more at 149, 5 more at 74. So at 30 days it *should* be at 74.His is at 11, 31 days post op, your doc should be pleased, not concerned. Under normal circumstances it would take almost 2 more weeks days to get from 74 to 11. ( 37,18,9). The half life of your husbands AFP has been about 3.5 days, so quite a bit faster than expected.His doc is wrong to be concerned.

                    He is likely cured already, I would not consider any additional active treatment unless those numbers start rising. If his doc insists on further treatment, have him contact Doc E...( or you contact him yourself)

                    Dave
                    Last edited by Davepet; 09-15-17, 01:24 AM.
                    Jan, 1975: Right I/O, followed by RPLND
                    Dec, 2009: Left I/O, followed by 3xBEP

                    Comment


                    • #11
                      Update: afp down to 2.9!! Stage is 1a, we chose to do 1 round of chemo just in case, we start on Oct 2nd
                      Crystal wife to Jonny (30) diagnosed

                      1/28/2015: got sick after dirt bike riding, right testicle swelling
                      5/2015: saw a dr who said it was torsion but since the swelling "went down" we shouldn't worry
                      02/2017: swelling increased tremendously no longer "went down"
                      07/24/2017: had realistic dream telling him it was cancer, went to ER, was told it was never torsion and the tumor was cancer
                      Afp: 4759
                      Hcg: <1
                      Ldh: 258
                      07/28/2017: right orchiectomy ct scans all clear
                      08/04/2017: nonseminoma stage 1 no invasion 40% ec 60% yolk
                      08/28/2017: pet-ct and brain ct due to headaches
                      Afp: 11.8
                      Hcg: <2
                      Ldh: 138
                      09/06/2017: pet and brain clear
                      09/18/2017 afp down to 2.9! Stage 1a
                      10/02/2017 1xbep starts

                      Comment


                      • #12
                        My son had Neutropenia after his 1st BEP round and he ended up in the ER because of a bug bite! He was given a Neulasta auto-injector after the second round and it worked like a charm. Neulasta can have side effects and other chemo patients recommended taking Claritin for a few days. He had a few aches and pains but nothing serious.

                        Comment


                        • #13
                          Originally posted by Addictedangel View Post
                          Update: afp down to 2.9!! Stage is 1a, we chose to do 1 round of chemo just in case, we start on Oct 2nd
                          Great to hear. Going through 1xBEP will be annoying, but will give him extremely good chances of getting this all behind you two for good.
                          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!
                          9/18/2017 all clears up to this date!

                          Comment


                          • #14
                            Wishing your husband the best during chemo. Since it is one round, the concern about immunosuppression is not as intesnse as 3-2 rounds.
                            17 year old son 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 1/27/17
                            Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                            2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                            Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                            Comment

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