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  • My Story (ongoing)

    Unfortunately I'm a new member here. I have been doing a ton of reading here. For the most part, knowledge is comforting to me, I'm not a big fan of surprises.
    This place has been a hugely helpful resource.

    I'm a typical, healthy (otherwise) married 32 year old in Minnesota. The only interesting thing about me is that I have only had 1 testicle my entire life. From what I understand, it appeared that I had two when born, but within the first few months righty disappeared. A bit later some exploratory surgery was done to attempt to locate it, but it was never found. Anyway, with just 1 I had no issues fathering a child last year. In hindsight, I wish that general physicians would emphasize the need for those with previous undescended or missing testicles to be vigilant with checkups since we have a higher incidence of TC. I probably could have caught this at stage 1 instead of stage 2.

    Anyway, about 5/10/15 I had a bout of constipation and had some lower left pain in my back for a day or two. At the same time I noticed lefty was a bit swollen. I took a laxative and within a day or so the pain and constipation were gone, and I thought lefty was going down in size. Never thought anything was too amiss.

    6/1/15 the back pain returns and I check up on lefty and its still pretty swollen. I schedule a visit with a GP doc to get checked out.

    From here on out, I'm going out of my notebook:

    6/3/15 my pain is gone but there is no way I'm skipping the appointment. Meet with the GP, she says it could be nothing, it could be something. Has me do a urine and ultrasound test. Urine test is all good, ultrasound shows a mass. referred to a urologist
    6/5/15 urologist visit - he checks on me, says high likelihood of cancer, schedules blood tests, ct scans. I make sperm bank arrangements.
    6/8/15 ct scans done - chest, abdomen, pelvic. get results from blood tests and testosterone baseline
    testosterone - around 11am checked
    total 364 ng/dL range: 175-781
    free 9.2 ng/dL range: 9.0-30.0
    %free 2.5%
    Bioavaliable 229 ng/dL range: 40-235
    SHBG 19.6 nmol/L range 13.3-89.5
    Albumin-Olympus 4.6 g/dL range: 3.5-5.0
    bHCG - 26.86 mIU/ml std 0.5-2.67
    AFP - 8.66 ng/ml std 0-9
    LDH - 361 iu/L std 91-180
    6/9/15 sperm bank deposit. results: quite low count at 38,000/mL, 7 vials stored. Looks like lefty has taken a big hit. But still plenty for IVF, future kids secured.
    got CT results: lungs - found a few <5mm, bilateral pulmonary nodules. Not likely to be cancer but possible.
    lower lymph nodes on left side enlarged. Largest is 3.3*3.3cm*5.6cm. this is consistent with spread, and likely cause of back pain
    all other organs good.
    Spoke with urologist - my prognosis is very good. low tumor markers, only spread is lymph nodes. probably seminoma

    6/9/15 pre-op physical - ok. took blood for basic metabolic panel, hemoglobin check. Scheduled appointment for testosterone treatment
    6/12/15 sperm bank deposit. very similar counts, 7 more vials. This should be plenty for multiple IVF tries to have another child or two.

    6/16/15 - orchiectomy day! Actually went very well and straightforward. Stayed on couch for about 2 days, after that walking around some. After 4 days went out to eat. After 6 days went back to work (desk job).
    6/19/15 - pathology report: nonseminoma - 85% embryonal carcinoma, 10% choriocarcinoma, 5% yolk sac. pT1, no lymph or blood vessel invasion. Not seminoma like we hoped, but still not terrible.
    6/23/15 - oncologist meeting. Talked about case, treatment plans. pT1cN3M0 is staging. pre-op tumor markers were only slightly elevated, so he is confident the post-op tumor markers will be normal.Their location does both 3xBEP or 4xEP. The Dr. strongly prefers 4xEP as he has seen B toxicity firsthand and thinks it isn't worth the risk with basically identical effectiveness. I am leaning that way as well and am scheduled for July 13th to start chemo.
    6/24/15 - brain MRI. Oncologist wanted to do this as a precautionary measure, and I agreed it was a good idea. Scan was clear, so truly a stage IIC.

    So far everyone has been great. My urologist seemed very experienced in TC and my surgery and recovery are going very well. My Oncologist seems very experienced in TC as well and even talked a bit about Dr. Einhorn and handed me the NCCN testicular cancer guidelines. It probably helps that I am near a large population center so they see and treat TC often. I am also visiting the Mayo clinic in Rochester for a 2nd opinion to make sure that nothing is missed. I'm pretty confident the Mayo guys will be argreeing with my local doctors but this is serious business and I want to be absolutely sure.

    My wife was probably a lot more worried about all of this than I am. I have been a sponge and reading all i can about the treatments, success rates, and success stories, so I'm quite confident that by the end of the year, I will be back 100% and cancer free. She wasn't as confident until I brought her along to my oncology appointments where the Dr. gave her a lot of confidence.
    Luckily our child is only 6 months old right now, so he isn't so bad to keep up with. He'll be crawling soon but that'll be a lot easier than dealing with a 2,3,4 year old when undergoing chemo and potentially RPNLD. We already have full time daycare and work is being VERY flexible and I have good health benefits so I think our financial impact will be minimal. We would have been trying for our 2nd child right now, so that's going to be put off some. Hopefully I get an all clear by November and we can begin the IVF process then. Good previous financial planning has made that a very viable option even if insurance won't cover much of it.

    Tomorrow 6/25 I have an appointment with the endocrinologist for testosterone replacement. As I understand it he has treated cases like mine before and is very experienced. So far I am 9 days post surgery with no testosterone and I am probably a little down on sex drive, and a little more scatterbrained. But that's it right now, no other symptoms.

    I'll keep updating this as I go along!
    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!

  • #2
    Why have they waited so long to start TRT?? It's not like you are magically going to start making testosterone with no testicles, after all. Consider firing your docs & finding some that actually understand what you need. You should not have gone even one day without TRT with no testicles.

    Dave
    Last edited by Davepet; 07-30-16, 01:58 AM.
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

    Comment


    • #3
      Originally posted by Davepet View Post
      Why have they waited so long to start TRT?? It's not like you are magically going to start making testosterone with no testicles, after all. Consider fireing upr docs & finding some that actually understand what you need. You should not have gone even one day without TRT with no testicles.

      Dave
      That was my thought as well pre I/O reading peoples stories of going 3 weeks. So I did press them to have the treatment started ASAP after I/O. But the doctor said I would be just fine at 9 days, and in reality I have been. Today is my appointment and insurance pre-approved at least androgel so I should be starting today. I feel pretty informed after reading a ton here about TRT so I'll be asking the Dr. lots of questions and see if he seems good or if I need to switch to one that will work with me better. I have a feeling my baseline T level pre I/O was already a little lower than my normal level since the teste already wasn't working well (very low sperm count). But I guess 364 at 11am isn't that low. We'll see how things go with the treatment, at least I know what to look for for symptoms and that the goal here is to get me feeling completely normal, not to just get me above the minimum.
      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


      • #4
        Meeting with the endo went well, he seemed very experienced and went over all the treatment options and types, explaining the pro's and cons and the importance of keeping testosterone levels not too high and not too low. Apparently there is a relatively new 10 week injection on the market in the US called Aveed that is an option now. I had seen here that those were available outside the US for a while, but finally are approved here. I got my initial prescription for androgel and will start out with that this morning and see how that goes. Long term I'd like to end up on either long term injections, pellets, or self administered weekly injections, but we'll get a feel for it this way first.

        As a side note, I had switched insurances in the last year and I haven't had a prescription filled since then. When I got to the counter to ring it up it was $500. I asked them what full retail was on it - $515. I tried to explain to them that I had already received a pre-approval letter from insurance so I was flabbergasted. I figured I could straighten it out with insurance so I paid and left. I got home and reviewed my insurance papers and was confident it should have been covered with a relatively small copay. Then it dawned on me I had switched providers. I called up the pharmacy and asked them what insurance information they had on file for me and sure enough it was the wrong policy. I swung back up and got it all straightened out, new bill was just a $50 copay. Whew, much better!
        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


        • #5
          At your age, 364 *IS* pretty low, but it might not be low enough to trigger some of the worst symptoms, and you might have a problem convincing your doc that you need an Rx at that level. Chances are you can no longer maintain even that now, though, so you will likey need TRT going forward. If your doc doesn't "get it" don't be afraid to find a new one.

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

          Comment


          • #6


            Glad your new insurance worked out fir you. The gels are indeed pricey if you have to pay out of pocket.Thank the patent laws for that. Even the new generic of Androgel 1% is around $300 US without insurance....
            Jan, 1975: Right I/O, followed by RPLND
            Dec, 2009: Left I/O, followed by 3xBEP

            Comment


            • #7
              Originally posted by Davepet View Post
              At your age, 364 *IS* pretty low, but it might not be low enough to trigger some of the worst symptoms, and you might have a problem convincing your doc that you need an Rx at that level. Chances are you can no longer maintain even that now, though, so you will likey need TRT going forward. If your doc doesn't "get it" don't be afraid to find a new one.

              Dave
              I'm the equivalent of a 2TCer (see 2nd paragraph), so I most definitely need TRT :P. I'm guessing my T level has always been a little on the low side. We'll see how things go on the Androgel. At 32 I do think my target should probably be in the upper 3rd of the "normal" range, but if I've been used to a lower T level all my life maybe I won't like that. Who knows, we'll just work with the Androgel dosage over time and see. What is a typical 2TCer dosage?
              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


              • #8
                Starting round 1 of EP tomorrow. Actually looking forward to just getting this all over with! Its feels a little weird going into chemo treatment feeling basically completely normal. But the scans and blood tests don't lie, so gotta get rid of this!
                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


                • #9
                  Day one went well. 1/20th done with chemo! No real side effects. about 8pm I felt burpy so I took one pill of the stomach med they prescribed and that was it. slept well.
                  Biggest complication was infant son having an ear infection and fever over the weekend. He was not sleeping well and not able to go to daycare. Luckily my wife is great and taking care of him. But it still wore me out a bit!
                  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


                  • #10
                    Watch out with that infection. Your immune system will be at it's lowest point late next week/weekend (around day 14 of the cycle).

                    You'll get through this easy. Start taking your anti emetics (Zofran) around wednesday/thursday this week. You'll likely need to stay on them till monday/tuesday.

                    I wonder how much hair loss you will have ?....that'll be interesting to see.

                    - 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
                    July 10th 2018: 4 YEARS ALL CLEAR !

                    Comment


                    • #11
                      Originally posted by JeskiM69 View Post
                      Watch out with that infection. Your immune system will be at it's lowest point late next week/weekend (around day 14 of the cycle).

                      You'll get through this easy. Start taking your anti emetics (Zofran) around wednesday/thursday this week. You'll likely need to stay on them till monday/tuesday.

                      I wonder how much hair loss you will have ?....that'll be interesting to see.

                      - Matt
                      Thanks for the comments. Nice to see you got the all clear!

                      Yeah, I made sure to let my oncologists know about it. Ear infections are not communicable as far as I know so as long as that's whats causing the fever I should be OK.
                      I am getting a few IV medicines to go along with the chemo, I know some were anti-nausea and there was a steroid as well, so they said at least chemo week I won't need to take much of the anti-nausea at home. I do have Prochloperazine for nausea at home for when I need it, as well as lorazepam to help at night if I am restless and can't sleep from the steroid.

                      As far as I know I should have complete head hair loss, like most people on EP or BEP. Supposedly around day14.

                      Day 2 chemo is done for today, actually felt a little better after it than yesterday so far. Probably because my wife fell on the dagger for me and took care of my son each time he work up last night, so I got an extra 2+ hours of sleep vs Sunday night. Bless her!
                      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


                      • #12
                        Day 3 of chemo over with. Felt pretty much the same as day 2. slightly more nausea this evening, took a nausea med around 5pm, that cleared things up. then took a lorazapam at about 10pm to keep the nausea down overnight and keep the steroid from keeping me up. Today is day 4 out of 20!
                        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


                        • #13
                          One day at a time.

                          You seem to be doing well and your experience thus far is on par with what my first week was like.

                          - 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
                          July 10th 2018: 4 YEARS ALL CLEAR !

                          Comment


                          • #14
                            Just got home from day 5 of chemo. Not feeling too bad, just that always present weird stomach feeling. Food still is very good and calming on the stomach. If this continues I may gain weight lol. Had microwave lasagna for lunch during chemo, that was tasty. Also had some chicken nuggets lol. My wife came to all my chemo's this week and the hospital across the street has a cafe and mcdonalds inside, and there are a few places that deliver into the infusion area. When I got home today I even mowed the lawn. No signs of any finger tingling, ear ringing, etc at all. Now I have 2 weeks off chemo, we'll see how things go!
                            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


                            • #15
                              Glad it's going well so far. Be aware, the weekends after the long weeks seem to be the worst times, don't hesitate to use the anti-nausea meds at the first bit of feeling queasy. If you wait until you can't keep anything down, they will not stay down long enough to help you.Also be aware that you will most likely feel a bit worse with every course, most of us do.

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

                              Comment

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