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Relapse after almost 6 years of all clear, starting 3 BEP tomorow 7/31/17

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  • #16
    How did it go ? any update august ?

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    • #17
      Hi thanks for ask I did finish chemo last Tuesday, I did well but I feel really beat up, having also very bad neuropathy in my hands which they give me Neurontin which somehow helps , still is very annoying especially to do anything with my hands, I have my CT scan 16th this month and a DR appointment following week, happy to had finish chemo but I'm very tired, depressed, still with some guilty feelings and frustrated how the summer is gone , I'm assuming all this have to do with chemobrain and I will get better as time goes on, sorry if I'm complaining too much . Better times will come.

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      • #18
        You will be fine my friend in time! I'm 3 months out of chemo and I feel pretty good! It goes faster than you think!
        3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 9/12/18 All clears up to here!

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        • #19
          August1509,

          I am sorry to read you have a recurrence... but I think you should get strength from this forum and see that in reality you are lucky... I know, its is odd to tell it to someone with cancer... dont get me wrong, not trying to make you feel "blessed"... because the best would be if we were not here...

          But your seminoma type is highly (99%) curable and it is almost entirely sure that after 3*BEP you will be fine. You can still plan and live!

          3-4 months from now and you can fully go back to your "previous" life. Dont forget to bank!

          (Chemo is manageable, i had 4*BEP. )

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          • #20
            AUGUST~ Give yourself time to recover, both phsyically and emotionally. Having had the Orchietcomy years ago, having all- clears, and than BAM you need chemo, is tough!!!!! Please keep us updated.
            Son Grant
            dx 12/21/16 at age 17

            BEP x3
            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.

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            • #21
              Hi just want to update got my results from my Ct scan after chemo, good and bad news. Good news my tumor got smaller went from 6cm to2.7cm and from 5cm to 1.5 cm, tumor markers normal, the rest of my body clear, bad news my oncologist says I may need surgery since didn't disappear, plus he is not comfortable with the size. He also was worry about who he will refer me for Rpldn surgery, he says the surgeons he knew were not familiar enough with this procedure ( very honest to me) he told me, probably had to send me to Hopkins. Yesterday he calls me and says he find a good Dr. His name is DR Ross E Krasnow and he will see me next Tuesday. I contact Dr. Pierozagio from Hopkins, he responds quickly and is willing to see my case. I feel some relief since both Drs are listed in the post for TC Experts surgeons. Dr Krasnow is new in DC area plus is 20min away and is in my health care network so if I have to get surgery is faster for insurance and paperwork only thing don't see lots of info form him around the web about Rpldn experience. Dr Pierozagio is well known but I have to do more things with insurance and location is further. Well, at least I have options. I still feeling very tired, weak from chemo, this is very stressful for me since I just don't know how I can do this surgery still feeling bad from chemo. If somebody is been treated from this Drs I will appreciate sharing your experiences with me. Thank you.

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              • #22
                Well just want to wish to every member Happy and Healthy New Year. Also, I want to update after finishing chemo and a very difficult time making a decision, I had RPLND surgery on Nov 27 2017 at Medstar Washington Hospital Center with DR Ross E Krasnow, surgery last 8 hours, I was out of the hospital in 3 days, and the recovery is been very smooth , the pathologic report came with all the 49 lymph nodes remove all clear , so even better news,, Dr. Krasnow and his team were amazing, now 4 weeks after surgery bassicaly no major issues , also I think my ejaculatory funtion is coming back , had tried couple times , everytime looks like is getting better meaning more fluid coming out, still less than before surgery. Dr. Krasnow is a great guy with incredible skills, very interested in TC and had good experience with PC RPLND surgery, I was very afraid to do this surgery with him, but after his incredible support and great communication couldn've been in better hands. If any member in Washington Dc area is having issues finding a good Dr for TC I will definitely suggest getting a consultation with him, or any questions about my experience please let me know, I am happy to share any info. Again Happy Healthy New Year to everyone.

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                • #23
                  Great, thanks for posting the follow up!
                  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!
                  9/27/2018 all clears up to this date!

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                  • #24
                    keep going, looking great, Happy New Year
                    11.2009 (age 29)carcinoma embryonale testis,op left side(orchiectomy),600 AFP, 90 bHCG(after op still high) ,CT chest and abdomen clear
                    12.2009 - 2.2010 3xBEP + bleomicin
                    going on controls every 4 month,all clear

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                    • #25
                      Great news, good on you, august1509!! Happy New Year, hope this one is an all clear for you!!
                      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

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                      • #26
                        Great news! Glad to hear all is going well!
                        3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 9/12/18 All clears up to here!

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                        • #27
                          Hi there is been a while since a post on this forum , life is been different after the tremendous fight a had last year with TC. First I been some how depressed or with the feeling of I was in war and there's no more action (very weird) plus getting stress for everything and trying to don't even thing in TC only when I had checkups . It's been a year after my Chemo 3BEP and 11 months from my PC RPLND open bilateral with all clean lymph nodes, also I fully recover my ejaculation Dr Ross E Krasnow did and amazing job including follow up . Now when I finally start felling better and losing my fears , just read my last Ct Scan and it says everything is normal not sings of recurrence but I have a Hydrocele on my right Testes. This is enough to freak me out , I had 3 previous Ct Scan and never show up , blood work always fine , and for the record I read it from my digital file , I haven't talk to my DR's is Sunday Eve and just reading DR Google it can be many things , I just wonder if somebody has the same experience ? Thanks

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                          • #28
                            Great to hear you're going well after treatment!! That's the legacy of testicular cancer - you're constantly worried about the remaining testicle... If you have one! I know I do - having what might be chronic epididymitis always keeps worries on my mind... Hope your urologist can help with the hydrocele
                            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


                            • #29
                              Originally posted by august1509 View Post
                              Hi there is been a while since a post on this forum , life is been different after the tremendous fight a had last year with TC. First I been some how depressed or with the feeling of I was in war and there's no more action (very weird) plus getting stress for everything and trying to don't even thing in TC only when I had checkups . It's been a year after my Chemo 3BEP and 11 months from my PC RPLND open bilateral with all clean lymph nodes, also I fully recover my ejaculation Dr Ross E Krasnow did and amazing job including follow up . Now when I finally start felling better and losing my fears , just read my last Ct Scan and it says everything is normal not sings of recurrence but I have a Hydrocele on my right Testes. This is enough to freak me out , I had 3 previous Ct Scan and never show up , blood work always fine , and for the record I read it from my digital file , I haven't talk to my DR's is Sunday Eve and just reading DR Google it can be many things , I just wonder if somebody has the same experience ? Thanks

                              Hydroceles are fairly common, and mostly benign unless they cause discomfort in the scrotum. If there's no discomfort at all, you're fine to leave it. It's just a fluid filled sack, usually water. No threat of malignancies, and no blood supply. No need to worry. Just look forward towards your years of all clears.


                              Can I ask, what was your original pathology?
                              Dx: 10/4/10
                              Blood Results for tumor markers came back Normal.
                              Surgery/ Left I/O: 10/26/10
                              11/2/10 - Pathology report came in, 100% seminoma with no evidence of cord invasion. 3 foci, 1.1cm, 0.6cm, and 0.3cm.
                              11/3/10 - CT scan of Pelvis and Chest is clear, no abnormalities.
                              11/18/10- Surveillance
                              10/26/11 - All Clear

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