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3rd cycle of BEP started, mediastinum lymph nodes haven't reacted at all

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  • 3rd cycle of BEP started, mediastinum lymph nodes haven't reacted at all

    Just recieved the results from my last weeks CT-scan. Retroperitoneal and the ones under collarbone lymph nodes have vanished but the ones in mediastinum haven't reacted at all. On friday there is going to be a multi-doc/oncologist meeting about do I need 4th cycle.
    Good news is that AFP, the only marker that was up came down from pre-treatment 268 to 6.

    Has anyone else had this kind of reaction to treatment? I'm guessing this has something to do with my 20 years of cigarette smoking, I quit the day I heard I'll start BEP, only 5 days prior.
    If you want to read my treatment diary I post it on reddit: https://www.reddit.com/r/testicularc...tarts/df5xpu4/

  • #2
    Also, week before last I got migraine-aura kind of episode that lasted about 90 minutes with 95% blindness, no pain, only strange feeling on teh left side of head. Got my brain MRI'd just to be sure, all clear there. Not even a thought was found!

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    • #3
      What size were they? CT report? what was your staging and histology?
      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!

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      • #4
        Stage 3. I don't remember the exact sizes, about 1.7-5cm clumps in the mentioned locations. Retroperitoneal were the biggest and caused serious pain with pre-existing back problems. CT is being evaluated throughly on fri by the multi-doc meeting and compared to pre-treatment PET-scan, the results can't be straightly compared due to scan differences.

        This is a copy & paste from another topic
        I had orchiectomy 11/2016 2 days after a sharp pain in testicle and ultrasound in the ER, was diagnosed (edit: Non-seminoma yolk sac tumore) by pathologist 12/2016 and got all clear from my first meeting after orchiectomy in 1/2017. First control blood work 2/2017 showed elevated AFP and I had started to get that weird very hard constantly growing pain about a week earlier. Week later I was at the PET-TT scan that showed the swollen retroperitoneal lymph nodes are very close to my broken spine ligaments 3&4, which very very likely contributed to the back pain as my oncologist said. That pain couldn't be managed even with oxycodone, ibuprofen, parasetamol and high CBD-MMJ combined. At the end of the first BEP-week the pain and swollen lymph nodes in my neck started to get smaller and AFP went from 270 down to 76.

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        • #5
          I hope someone can help. I can answer that it is not uncommon for lymph nodes in the retroperitoneal area APPEAR to NOT respond -at least according to what CT Scans show.
          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.

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          • #6
            I would contact Dr E or some other expert at this point. I know cases where they have switched to higher dose TIP/VIP chemo after two or three cycles of BEP if the response was not good enough. I think I should have got this kind of treatment. Only real tc experts can tell.
            08-12/2015 Back pain, several epididymitis, fever, night sweats, went to many doctors but nobody thought I had cancer as I had nothing in testicles
            01/2016 Retroperitoneal seminoma stage III, 28cm (tall) mass in retroperitoneum, big masses also in neck
            02-04/2016 3*BEP
            09/2016 Fever again -> relapse, cancer now in lungs too
            09/2016 2*TIP
            10/2016 1*HDC with stem cell transplant -> almost died to severe side effects, one week in ICU, 2nd round skipped
            02/2017 RPLND (21 hours!) - one week in ICU again, found necrosis/fibrosis only
            06/2017 All clear!

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            • #7
              Thanks for your responses. And congrats Stufax on your all clear!
              I have to ask but I highly doubt they will contact any outside doctors..

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              • #8
                Just because your docs may not be inclined to reach out to Dr E. or other TC experts doesn't mean that you cannot !

                Don't limit yourself on options....that includes doctors.

                - 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 8th 2017: 3 YEARS ALL CLEAR !

                Comment


                • #9
                  Okay I met my oncologist and checked the exact measurements pre-treatment:
                  -Para-aortal, both sides at kidney level had 2.3cm nodes that totaled almost 5cm
                  -Neck, left side 1.7x1cm
                  These vanished

                  Mediastinum: 12mm and hasn't reacted at all.

                  The docs won't contact Einhorn as I guessed, didn't even know who he is. I don't have enough medical expertise to contact him.

                  Comment


                  • #10
                    You don't need medical expertise to contact him. You only need to give him all the facts related to your case...very similar to what you have told us and email him that. He typically replies within the day.

                    His email is: leinhorn@iu.edu

                    That mediastinal node is barely over 1 cm. It's possible that it may not be cancer, especially if it does not grow in subsequent scans. Personally I'd rather keep an eye on it closely, which gives you some time to recover from chemo...then if you need further treatments you'll be in better shape to tolerate it. I suppose there is always a chance that it could be Teratoma which would not be affected by chemo.

                    - 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 8th 2017: 3 YEARS ALL CLEAR !

                    Comment


                    • #11
                      Where are you located that your docs aren't willing to contact the best & most renowned TC cancer doc in the world?

                      I'd be looking for new docs...

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

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                      • #12
                        Thank you for your responses guys!
                        I'm from Finland and I gave them the contact info and a little explanation who he is and that he is willing to consult them.
                        I kind of wondered why they were so strict about contacting him...
                        I'll keep you updated when I recieve a word from the multidoc-meeting later today.

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                        • #13
                          Your docs are clearly not looking out for your best interests, I would change docs. It is absolutely ridiculous to not consult with the worlds best expert when he is so willing to help.

                          Dave
                          Last edited by Davepet; 05-12-17, 02:44 AM.
                          Jan, 1975: Right I/O, followed by RPLND
                          Dec, 2009: Left I/O, followed by 3xBEP

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                          • #14
                            No fourth cycle, another CT after this cycle, so for now, hopefully last long week in hospital. After CT they weight the 4th cycle and possible surgery.

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                            • #15
                              Okiedokie, the last, for now, Bleo-infusion was on wed. Getting CT-scanned next month and results come in at the start of July.
                              Found out that the migraine was induced corticosteroids, I react to that quite roughly compared to the actual treatment.

                              AFP, the only markert that was elevated has dropped during the BEP-treatment:
                              Before BEP: 270~, mid treatment: 70~ last bloodwork: 6

                              Thank you people of this forum, this has helped me quite a bit when the boat has been rocking in the open sea and all kinds of nameless horrors have been lurking under the surface. I'll update my situation when I know more.

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