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  • What else can/should I be doing?

    I've been reading this forum for about 2 months, but this is my very first post.
    My cancer story started in the beginning of June 2018. I think that I've stayed mostly positive throughout the process, but occasionally I have an overwhelming feeling of being out of control. I'm new to all of this, and I don't know if I'm doing everything I can or should be doing. I often don't know what questions to ask my oncologist.

    What else can or should I be doing?

    *Should I consider modifying my diet? (I don't eat fast food, but I'm not a careful eater)

    *How much can/should I exercise? (I was running 10 miles/week pre-orchiectomy. I'm only running about 3 miles/week + walking 3 miles/week.)

    *I used to drink 1 or 2 beers per week, haven't had a single brew since 6/3/18. Is it okay to have an occasional beer?

    *I believe that my immune system will hit it's lowest point this Wednesday (+3 weeks since carbo X1). I'm washing my hands like a mad man... being cautious when in public. Is there anything else I should do?

    *Adjuvant chemo is CarboX1. Should I have considered CarboX2? At this point, is it still an option?

    *What are the most important questions to ask my oncologist at this point?

    Sorry for all of this questions, but any input would be greatly appreciated. Thank you.
    -------------------------------------------------------------------------------------------

    I've posted a timeline below with some details.

    6/4/18 BHCG 452, AFP 1
    6/13/18 CT Scan, no involvement beyond left testicle
    6/18/18 Radical Left inguinal orchiectomy, Pathology pure seminoma, rete testis obliterated
    7/1/18 BHCG 7, AFP 1.5
    7/12/18 BHCG<1, AFP 1.5, LDH 220, Diagnosed as Stage 1b, T3N0
    7/25/18 Adjuvant Chemotherapy, 780mg Carboplatin
    8/27/18 Next CT Scan scheduled
    9/7/18 Follow up oncologist appointment scheduled.
    6/4/18 BHCG 452, AFP 1
    6/13/18 CT Scan, no involvement beyond left testicle
    6/18/18 Radical Left inguinal orchiectomy, Pathology pure seminoma, rete testis obliterated
    6/29/18 BHCG 7, AFP 1.5 (calc 1.8 half-life)
    7/12/18 BHCG<1, AFP 1.5, LDH 220, Diagnosed as Stage 1b, T3N0
    7/25/18 Adjuvant Chemotherapy, 780mg Carboplatin
    8/27/18 Chest CT Scan clear
    9/7/18 BHCG<2, AFP 2.0, LDH 182 (Different lab w/diff ranges than initial tests)
    9/26/18 MRI to review liver cysts for possible metastasis, all clear. No lymphadenopathy
    11/19/18 Next blood test
    11/23/18 Next CT Scan
    11/30/18 follow up with oncologist

  • #2
    You should maintain a healthy diet and exercise schedule as a facet of life, but nothing specific to chemo. I do know that grapefruits are contraindicitive with chemo, so you probably want to pass on those for a while.
    I don't think the occasional brew would be a problem, but ask your onc.
    Just monitor your temperature. As long as you avoid a fever, you'll be fine.
    I don't think you'd need CarboX2. There's even some dispute now over whether adjuvant, Carbo or BEP is even beneficial. My onc and I, after consulting Dr. Einhorn agreed to pass on adjuvant and just wait for the 50% relapse chance and pound it with BEP, which wound up happening anyway. At the end of the day, BEP ruins TC's world. I can't stress how important it is to not dwell on decisions and second guess yourself. The fact that it was confined to the testis and you had normal tumor markers ahead of carbo likely means your CT is going to come back clear and you're going to be put on long-term surveillance.

    Remind yourself that you're in the 99% cure rate tier and the most harm this will do to you is via you spending so much time worrying and not living your life. All roads lead to you being cured. Listen to your doc and live your life. You got this.

    Comment


    • #3
      Yes, mate, an occassional beer is fine - I can tell you from experience

      Ask about fertility options, if you're getting chemo - you can put some sperm away for safe keeping... Crucial, even if you're not thinking about that right now!
      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


      • #4
        Shabby,
        Thanks for your feedback. Another perspective really does help to calm my anxiety. You did give me a bit of a chuckle-- Grapefruit is one of the very few fruits that I don't eat on a regular basis!
        My oncologist suggested surveillance as a viable plan for my staging, but I insisted that I wanted to be aggressive. After talking it over with the doctor, my wife and decided carbo was a good choice for us. I've been wondering if I was aggressive enough; your feedback makes me feel better about where I am.

        Again, thank you.
        John
        6/4/18 BHCG 452, AFP 1
        6/13/18 CT Scan, no involvement beyond left testicle
        6/18/18 Radical Left inguinal orchiectomy, Pathology pure seminoma, rete testis obliterated
        6/29/18 BHCG 7, AFP 1.5 (calc 1.8 half-life)
        7/12/18 BHCG<1, AFP 1.5, LDH 220, Diagnosed as Stage 1b, T3N0
        7/25/18 Adjuvant Chemotherapy, 780mg Carboplatin
        8/27/18 Chest CT Scan clear
        9/7/18 BHCG<2, AFP 2.0, LDH 182 (Different lab w/diff ranges than initial tests)
        9/26/18 MRI to review liver cysts for possible metastasis, all clear. No lymphadenopathy
        11/19/18 Next blood test
        11/23/18 Next CT Scan
        11/30/18 follow up with oncologist

        Comment


        • #5
          Joe,
          Thanks for the info... I think I'm going to drink half a beer tonight.
          I'm probably a bit older than the average Joe (sorry, couldn't resist!) on the board... sperm banking isn't a concern for me. I have 3 teenage kids; I'm done! But, nonetheless, a good point for someone else that might read this post.

          John
          6/4/18 BHCG 452, AFP 1
          6/13/18 CT Scan, no involvement beyond left testicle
          6/18/18 Radical Left inguinal orchiectomy, Pathology pure seminoma, rete testis obliterated
          6/29/18 BHCG 7, AFP 1.5 (calc 1.8 half-life)
          7/12/18 BHCG<1, AFP 1.5, LDH 220, Diagnosed as Stage 1b, T3N0
          7/25/18 Adjuvant Chemotherapy, 780mg Carboplatin
          8/27/18 Chest CT Scan clear
          9/7/18 BHCG<2, AFP 2.0, LDH 182 (Different lab w/diff ranges than initial tests)
          9/26/18 MRI to review liver cysts for possible metastasis, all clear. No lymphadenopathy
          11/19/18 Next blood test
          11/23/18 Next CT Scan
          11/30/18 follow up with oncologist

          Comment


          • #6
            Hi John,

            There is a bit of debate lately about the effectiveness of carboplatin x1 as adjuvant therapy for stage I seminoma but it would like you and your doctor discussed that prior to therapy. Whether Carboplatin x2 is a more effective option? I haven't really heard any experts lead this way but rather heard more lead towards surveillance. At 21 days out, giving a second round now, probably isn't even feasible. The decision you made was the right decision for you, as you noted, and that is the key.

            At 21 days, your blood counts are most likely at their lowest, but without knowing your counts, you really can't estimate your risks as blood counts vary patient to patient. Using precautions, hand washing, etc. as mentioned above is never a bad idea at this point.

            Living a healthy lifestyle, is never a bad idea either, however, it would be hard to relate what you eat or whether you have a few beers a week or not, or how far you run or not, as relating to the odds of your cancer coming back or not so I personally wouldn't be a zealot about anything in particular after your diagnosis but rather would choose to do that makes me happy (within moderation perhaps).

            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

            For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

            Comment


            • #7
              Originally posted by johnm620 View Post
              *Should I consider modifying my diet? (I don't eat fast food, but I'm not a careful eater)
              Nothing you eat is going to affect your TC, but trying to eat healthy food is never a bad idea.

              Originally posted by johnm620 View Post
              *How much can/should I exercise? (I was running 10 miles/week pre-orchiectomy. I'm only running about 3 miles/week + walking 3 miles/week.)
              As much as you feel comfortable with, there is no right/wrong here, but generally those who are active seem to do better than than that are not.

              Originally posted by johnm620 View Post
              *I used to drink 1 or 2 beers per week, haven't had a single brew since 6/3/18. Is it okay to have an occasional beer?
              I had several scotch on the rocks throughout my chemo, didn't seem to hurt anything.

              Originally posted by johnm620 View Post
              *I believe that my immune system will hit it's lowest point this Wednesday (+3 weeks since carbo X1). I'm washing my hands like a mad man... being cautious when in public. Is there anything else I should do?
              Probably best to worry a bit less. "washing like a madman" is probably overkill.

              Originally posted by johnm620 View Post
              *Adjuvant chemo is CarboX1. Should I have considered CarboX2? At this point, is it still an option?
              I don't think so, I probably would have opted for surveillance myself.

              Originally posted by johnm620 View Post
              What are the most important questions to ask my oncologist at this point?
              I'd start with "How much experience do you have treating TC?", Otherwise just ask what you want to know.


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

              Comment


              • #8
                Mike and Dave,
                I just realized that I didn't thank you for your messages. I apologize - I very much appreciate the information that you provided.

                I still haven't had a beer, but not because I have any TC-related concerns. I'm just determined to get myself back into better shape. I started to increase my running regimen over the last week, but I'm definitely taking it a little easier than I have in the past. Not sure why that is... for now I'll blame it on my age .

                Medically, I don't know if CarboX1 was a good choice for me, but mentally, I know it was the right decision for me. Just knowing that there was more that I could've done that might reduce the chance of recurrence would've stayed with me for years.

                As for now, I'm feeling great. Better than I did back on June 3rd, before my first visit to the urologist. And now I am taking the time to appreciate the little things in life. Which is a very good thing.

                Thanks again,
                John
                6/4/18 BHCG 452, AFP 1
                6/13/18 CT Scan, no involvement beyond left testicle
                6/18/18 Radical Left inguinal orchiectomy, Pathology pure seminoma, rete testis obliterated
                6/29/18 BHCG 7, AFP 1.5 (calc 1.8 half-life)
                7/12/18 BHCG<1, AFP 1.5, LDH 220, Diagnosed as Stage 1b, T3N0
                7/25/18 Adjuvant Chemotherapy, 780mg Carboplatin
                8/27/18 Chest CT Scan clear
                9/7/18 BHCG<2, AFP 2.0, LDH 182 (Different lab w/diff ranges than initial tests)
                9/26/18 MRI to review liver cysts for possible metastasis, all clear. No lymphadenopathy
                11/19/18 Next blood test
                11/23/18 Next CT Scan
                11/30/18 follow up with oncologist

                Comment

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