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  • My 17 year old starts 3 x BEP this Friday

    Grant will recieve the first 5 days of every cycle in-patient. The CT-Scan before surgery on 12/22, did not show any spread, but yesterday's scan showed two nodes 2cm, and one 3.5cm. I do not have report in front of me, this was via Oncologist over phone. I assume this changes things? He has not yet been staged, was thinking 1S, but not certain this is still correct? Tumor markers never returned to normal & increased last week.
    Last edited by Trekga; 02-16-17, 06:16 PM.
    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

  • #2
    Very similar to me, I had a clear scan before my operation but 4 weeks afterwards my markers were increasing and they found an increased node in a CT scan. Started BEP 6 weeks ago and about to start my third cycle.

    Everyone reacts differently but just make sure to make him comfortable. Drink plenty of water, 1.5-2l a day, but it's not as easy as it sounds as it begins to taste of chemo. Eating won't be easy, make sure to have a few things for him to try.

    I found the first cycle completely easy and the second a fair bit tougher but he might vary. He will lose his hair around the 3 week mark. As mentioned make sure the sperm banking is done beforehand, along with potential hearing and lung tests.

    Any questions just ask.
    24 year old diagnosed 6/11/16
    Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
    Pre/o CT Clear
    Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
    Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
    Post-op CT with one enlarged lymph node - 1.5x1cm
    Borderline stage 2B/3B
    BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
    CT and markers clear - in remission - 28/2/16

    Comment


    • #3
      Sounds like Stage IS is now IIB, so yes BEPx3 would be the preferred path at this point. Good luck to you all!
      Young Adult Cancer Survivorship by Steve Pake
      www.stevepake.com
      https://www.facebook.com/yacancerbysteve/
      Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
      My Survivorship Thread
      All of my Blogs

      Comment


      • #4
        I'm sorry to hear that the CT scans came back with positive nodes but this will not change his excellent prognosis and perhaps brings a little peace in finally knowing what you are facing. I know the marker slow decline was like sitting on pins and needles and the last results were not looking so great.

        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


        • #5
          I am a bit surprised that they would do it inpatient but perhaps that is how Children's does things. Did they give you any reason why they are doing it over the weekend and not just starting on a Monday and doing it through the week? Perhaps it is so that you don;t have to take two days off work during the week or something? It is just my experience from a pharmacy perspective that staffing and even physican coverages are a bit less on the weekends. I wouldn't be overly concerned but rather just something to think about. Again, it may be different with a children's hospital.

          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


          • #6
            Nish, I have been following your journey. My son had lung test yesterday (still waiting to hear), and has hearing test tomorrow morning.
            He is firm against banking, he told the Oncologist yesterday too much stress to produce samples if it not something he has done before.

            Steve- thanks

            Mike-We were surprised that the tx was in-patient, but when i think about the meds better to have where they can address any major side effects or problems. The weekend start though strange is a blessing since my husband is away this week on business until Friday afternoon. We do not have any family nearby, and just moved to TN in July so the support from nurses and Childlife people might be good.
            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


            • #7
              Re: eating and drinking during chemo:

              Drinking volumes of water a day becomes very hard to do sometimes. My Onco always gave me a 1L bag of saline both before and after the chemo. My kidneys suffered absolutely no damage as a result. However I did get severely dehydrated the few days after the long week of Cycle 3. Instead you can also try various flavored waters as regular water becomes almost sickening at times.

              Eating will be the next challenge. What worked for me was that I reverted back to eating foods that ate in my childhood. Lots of cereal...the junk kind. Chicken and Stars soup out of a can, etc. Chocolate was on of those things that I could eat a ton of during chemo. We made tons of graham cracker and chocolate pudding layer cakes....only something my mom made for me as a kid.

              The inpatient tx does indeed sound like a good thing for you all at this point.

              Keep us posted.

              - Matt
              March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
              March 13th: Left IO 100% Classic Seminoma
              6.3 x 5.1 x 3.8 cm, no invasion of anything
              LDH never fully normalized
              Stage: IS
              Watchful Waiting
              May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
              May 12th: started 3xBEP
              Neupogen during Cycle 2 and 3
              July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
              August 4th: Post Chemo CT/PET scan
              September 4th: Port removed
              January 11th 2017: 2 & 1/2 YEARS ALL CLEAR !

              Comment


              • #8
                Originally posted by Trekga View Post
                Nish, I have been following your journey. My son had lung test yesterday (still waiting to hear), and has hearing test tomorrow morning.
                He is firm against banking, he told the Oncologist yesterday too much stress to produce samples if it not something he has done before.

                Steve- thanks

                Mike-We were surprised that the tx was in-patient, but when i think about the meds better to have where they can address any major side effects or problems. The weekend start though strange is a blessing since my husband is away this week on business until Friday afternoon. We do not have any family nearby, and just moved to TN in July so the support from nurses and Childlife people might be good.

                I remember you mentioned he was against the sperm banking and you've tried your hardest. At the end of the day there's only so much you can do, there is still a chance that after the chemo he will be fertile so don't think that he will definently lose his fertility anyway.

                Agree with Jeski about the food/drink, flavoured water is good and cereal also.

                Also with BEPx3, a lot of people on here recommended getting a port. I wasn't really advised to do it in the UK as I am also inpatient but for 3 days not 5, but as yours is 5 days maybe you should enquire? But others on here can advise more about that.
                24 year old diagnosed 6/11/16
                Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
                Pre/o CT Clear
                Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
                Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
                Post-op CT with one enlarged lymph node - 1.5x1cm
                Borderline stage 2B/3B
                BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
                CT and markers clear - in remission - 28/2/16

                Comment


                • #9
                  There could be an option to take sperm sample via a small procedure, it could be easier for Grant?

                  From what I understand, the younger you are, the better your body responds to chemo when it comes to side effects - so hopefully your boy sails through it!

                  I'm 37 and doing cycle 3 at the moment and it's not too bad, just ask lots of questions when you have them, the nurses are your new best friends!

                  Also, I'd ask if you can call the hospital after hours between treatments with any questions? Couple of calls to the oncology ward when I needed it was priceless!

                  Comment


                  • #10
                    Joe~ great suggestions.

                    Matt~ thanks for suggesting flavored water. Great food suggestions too.

                    Nish~ Grant's port will be placed Friday They will let us know what time surgery will be- they will knock him out for it unlike for most adults here in the states.

                    Question, why would Oncologist stage my son as Stage 3B? Is it because of the size of the nodes and the more than slightly elevated markers?
                    I can find mixed things on-line when I search staging some say stae 2B, some stage 3B for nonseminoma. I guess it does not matter as far as chemo, correct?
                    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


                    • #11
                      Originally posted by Trekga View Post
                      Joe~ great suggestions.

                      Matt~ thanks for suggesting flavored water. Great food suggestions too.

                      Nish~ Grant's port will be placed Friday They will let us know what time surgery will be- they will knock him out for it unlike for most adults here in the states.

                      Question, why would Oncologist stage my son as Stage 3B? Is it because of the size of the nodes and the more than slightly elevated markers?
                      I can find mixed things on-line when I search staging some say stae 2B, some stage 3B for nonseminoma. I guess it does not matter as far as chemo, correct?

                      Again very similar to me, I was 1S, then got moved to borderline 3B/2B, but eventually got staged 2B I think. (To be honest i'm still not 100% sure, my oncologist has never given me a proper stage).

                      I'm guessing it could be because of your markers. As soon as they go over a certain bracket, for example AFP goes over 1000, it goes into stage 3. Maybe one of your sons markers is just over the border. http://www.cancer.net/cancer-types/t...-cancer/stages

                      That link might help in terms of staging. If his markers are only slightly over the stage 2/3 border, then it should be BEPx3 still, but if they're considerably into the stage 3 set they might consider x4, but it doesn't sound like that's a problem for your son so it should be x3 still.
                      24 year old diagnosed 6/11/16
                      Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
                      Pre/o CT Clear
                      Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
                      Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
                      Post-op CT with one enlarged lymph node - 1.5x1cm
                      Borderline stage 2B/3B
                      BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
                      CT and markers clear - in remission - 28/2/16

                      Comment


                      • #12
                        You may want to look into "cooling gloves" for chemo. I know the breast cancer patients often use them. I personally would have tried to keep my hands cold even with my 1 x BEP if I had done things again, because I do notice subtle changes in my hands. If I had to do 3 rounds, I would certainly try to limit the amount of drugs getting to the hands (and feet) by keeping them at a colder temperature.
                        https://www.amazon.com/Elasto-gel-Hy.../dp/B000URFIJ6
                        Canadian. Diagnosed at age 31. Treated in NYC. Now living in Columbus, OH.

                        7/1/2015: felt tiny lump on side of R testicle
                        7/30/2015: Ultrasound shows 2 intra-testicular masses.
                        7/31/2015: tumor markers normal, CXR clear
                        8/5/2015: R orchiectomy
                        8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
                        8/14/2015: CT abdomen/pelvis clear, Stage 1b
                        8/24/2015: started 1 x BEP

                        Comment


                        • #13
                          As mentioned before, here in Australia they do the first week of every cycle as in-patient. If is a blessing if they keep him even longer as it is so much safer in hospital. You would be so scared with your son at home after chemo, so take in-hospital option as much as you can. I hope it goes well. Take care.

                          Comment


                          • #14
                            Take in-patient as a blessing. The longer he is in hospital the safer it is. Hope it goes well.

                            Comment


                            • #15
                              Originally posted by Trekga View Post
                              Joe~ great suggestions.

                              Matt~ thanks for suggesting flavored water. Great food suggestions too.

                              Nish~ Grant's port will be placed Friday They will let us know what time surgery will be- they will knock him out for it unlike for most adults here in the states.

                              Question, why would Oncologist stage my son as Stage 3B? Is it because of the size of the nodes and the more than slightly elevated markers?
                              I can find mixed things on-line when I search staging some say stae 2B, some stage 3B for nonseminoma. I guess it does not matter as far as chemo, correct?
                              I am not sure about the 3B staging. Yes, it should not matter with regards to the chemo regimen in this case.

                              I was put under "twilight sleep" for my Port placement surgery. I don't know of anyone who was awake for the placement surgery. However for the removal of the port; it depends on the person doing the surgery....I was wide awake for my removal.

                              - Matt
                              March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
                              March 13th: Left IO 100% Classic Seminoma
                              6.3 x 5.1 x 3.8 cm, no invasion of anything
                              LDH never fully normalized
                              Stage: IS
                              Watchful Waiting
                              May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
                              May 12th: started 3xBEP
                              Neupogen during Cycle 2 and 3
                              July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
                              August 4th: Post Chemo CT/PET scan
                              September 4th: Port removed
                              January 11th 2017: 2 & 1/2 YEARS ALL CLEAR !

                              Comment

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