Announcement

Announcement Module
Collapse
No announcement yet.

Recurrence

Page Title Module
Move Remove Collapse
X
Conversation Detail Module
Collapse
  • Filter
  • Time
  • Show
Clear All
new posts

  • Recurrence

    I am writing this for my husband. He’s 32 and had right I/O in April 2017 after ultrasound surveillance since July 2016 of what was thought to be an intratesticular hematoma post an injury. Pathology from surgery came back as pure seminoma. On May 1st received CT scan results of one enlarged paraaortic lymph node that was less than 2 cm. His tumor markers have never been more than very mildly elevated and normalized after surgery. He completed 3 rounds BEP from May 2017-July 2017 (we had a mid-chemo baby in June of 2017). In late August 2017 he had a “clear” CT scan showing the lymph node was less than 1 cm. In late November 2017, CT scan showed that the same lymph node was back to pre-chemo size. After a lot of back and forth with tumor boards and doctors, he had a robotic surgery to resect the residual mass in January 2028. He did not have full RPNLD though. Pathology showed the mass was mostly necrotic with “clear” margins and a small amount of live seminoma—still showed as pure seminoma. At that point in time, the urologist recommended salvage chemo but the oncology team recommended surveillance. March 2018 CT scan showed a mass in the same location where the residual mass was removed with Mets to the liver which the mass was adjacent too. He is currently in the 2nd week of his second cycle of TIP.

    He is going to have a CT scan on Friday to check for staging/ progress? After the two cycles of TIP. Dr. Einhorn suggested the 2 cycles of TIP followed by 2? Cycles of HDC with transplant. The expert at MD Anderson (can’t recall his name) suggested 4 rounds of TIP. He is receiving treatment at the University of Chicago but decided against joining the trial as we would rather make our own decision without the randomization. With that being said they prefer the TI-CE protocol so the transplant oncologist is looking at 3 cycles of HDC instead of the 2 Dr. Einhorn does. We basically need to make the decision early next week.

    It’s been a long and stressful year. I don’t recommend cancer to anyone and cancer and a new baby is even worse I think. At this point we feel pretty hopeless and while there is still a chance? for a cure it feels pretty unattainable. So what I am looking for is anyone who has successfully been through TIP salvage with a durable cure and anyone who has been through this hybrid approach TIP-CE with a durable cure. I just would like to know that it’s possible. Also, we would welcome any research, advice, or input on which path to choose. It’s hard to hear that there aren’t yet definitive results if going high dose chemo earlier is definitely more effective. My husband feels like he would like to stick with TIP if it’s working and while I don’t want him to go through transplant if the TIP could be curative, I also don’t want to make the wrong decision here. Also curious if anyone has had surgery again after salvage or transplant chemo. I have seen some studies where liver Mets resection has resulted in a durable cure.
    Last edited by Skywalker; 04-25-18, 02:59 PM.

  • #2
    Sorry that you're dealing with this again. Paging Selman! (Tarc79) I think he's been through TIP-CE (MD Anderson??)

    The 2xTIP + 2x HDC w/SCT that Dr E is recommending will certainly flatten this cancer once and for all.
    Last edited by S P; 04-18-18, 09:47 AM.
    Young Adult Cancer Survivorship by Steve Pake
    April is Testicular Cancer Awareness Month!
    www.stevepake.com
    Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
    My Survivorship Thread | All of my Blogs
    C
    ONTACT ME ANYTIME!

    Comment


    • #3
      I can back up your claim that dealing with cancer and a baby is worse. Nevermind it's distracting you from such a fleeting period of your child's life. I'm still frustrated by that timing even though I came through alive.

      Sorry you're going through this. Hang in there.
      Aug 2013: vague fevers, exhaustion, weight loss, night sweats
      Sept 2013: became a father
      Oct 2013: diagnosis PMNSGCT, ~5cm x 5cm, AFP: 43 bHCG: 0
      Dec 2013: cycle 1, VIP 3wks
      Jan 2014: cycle 2, VIP 3wks, became allergic to polysorbates
      Feb 2014: AFP 813, bHCG: 0, scrapped chemo
      Feb 2014: upper left lobectomy, 7x6x5 cm tumor, teratoma / adenocarcinoma
      March 2014: AFP 70
      March 2014: AFP 19
      Apr 2014: AFP 11 !!!!
      Feb 2018: AFP & scans clear for 4 years

      Comment


      • #4
        I'm sorry I can't help with what you're after but it does sound like you're really well informed and getting advice from the best there is so hopefully you can take some comfort from that. I wish I had done more of that. Good luck.

        Comment


        • #5
          We met with our oncologist yesterday and received basically the best news possible. Husband's CT scan was "dramatically" improved after two cycles of TIP which means he is responding to platinum based chemotherapy. The mass is down to approximately 1 x 1 cm, no longer infiltrating his liver, and no longer putting pressure on his kidney. His oncologist again recommended transplant. She feels like his scan will be clear after 4 x TIP but is worried that there might still be "clones" that are resistant and is hopeful that the addition of HDC will knock everything out for good. My husband seems more energized by this news and has decided to go forward with transplant. I'm still not sure if he will be doing HDC/SCT x 2 or x 3. As soon as his counts recover, we will mobilize for collection and start this process. I read the patient guide to transplant we received last night and it looks more terrifying and complicated that I imagined. There are so many rules. Anyone have experience with how bad it is to go through this transplant process?

          Comment


          • #6
            Sounds like you guys are battling and making good progress! I know there are some here that have done HDC, hopefully they will chime in.
            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!

            Comment


            • #7
              To add to the rare things that have happened to my husband during his cancer battle, he had an extremely bad and rare reaction to apheresis (stem cell harvest) yesterday. He got extreme citrate toxicity which caused hypocalcemia which came on very suddenly, even though he was receiving calcium gluconate via IV at the same time. They ended up calling a full code on him because he was not responding to an increase in the calcium IV. He became temporarily paralyzed in his face and arms and hands and could not open his mouth or eyes. They had to use calcium chloride from the crash cart on him which finally helped eventually. He ended up having to be admitted to the hospital due to all the abdnormal levels and EKG from the experience. Thankfully they just barely got enough stem cells before it happened so he doesn’t have to do any more apheresis. Starting high dose chemo on Friday—hopefully that goes smoothly.

              Comment


              • #8
                Oh my! So sorry your husband is not only dealing with 2nd line chemo, but have such issues. Will keep you both in my thoughts.
                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.

                Comment


                • #9
                  Hey Skywalker, I just read this thread. I've some very personal experience from the situation you are now. You can check my signature for details. I can assure you that you have a high chance for cure with salvage TIP/high dose chemo. I've been myself now all clear for > 1.5 years. I think I can't remember a single case from this forum from the past years where there has been a relapse for seminoma patient after successful HDC. I think you did the right decision to go for HDC. If I were you I would do what Dr E recommends - only 2 rounds. Three rounds of HDC is not a standard procedure. It's good that the harvesting was successful and you are now clear to proceed to HDC. HDC is not a walk in the park but it's over sooner than you think. Good luck.
                  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!
                  06/2018 All clear (1,5 years now)

                  Comment


                  • #10
                    Hi Skywalker,

                    I hope your husband is doing well and responding to treatment. I'm reaching out because my boyfriend and I are in a similar situation.

                    My boyfriend was diagnosed last year and has had an orchiectomy, three rounds of BEP and RPLND. After about 4 months post RPLND, his HCG started rising. Initially treatment was going to be TIP or the clinical trial. However, a scan this week shows an enlarged lymph node that could be surgically removed and then he would go under surveillance. His doctor at Dana Farber is strongly recommending this path and trying to avoid giving my boyfriend chemo at all costs. However, he also has the option to do 4 cycles of TIP or the clinical study.

                    We are a little confused and have not made a decision yet. My boyfriend is leaning towards chemo but nervous about the long term side effects. We have a second opinion at Mass General on Thursday and I have also reached out to Dr. Einhorn - hoping he responds quickly!

                    Comment


                    • #11
                      Meglen- I hope Dr. E responded. So sorry your boyfriend is dealing with this. I assume his initial treatment was at Dana Farber? Sorry if I'm being too nosey, but was he "Good Prognosis" initially I assume so if he only had 3 rounds of BEP. Again so sorry.

                      SKYwALKER~thinking of you and your husband.
                      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.

                      Comment


                      • #12
                        Hi Trekga, no problem at all. His initial treatment was at Dana Farber & he was "good prognosis." Dr. E responded last night. I couldn't believe he got back to me that fast. Based on the info provided he recommended salvage RPLND and then either 2 rounds of EP if his HCG normalizes or if it doesn't a different type of chemo/duration would be needed.

                        Comment


                        • #13
                          My husband did respond to his two cycles of TIP and hopefully he will respond well to the HDC he is starting on Friday. I'm not really sure about his prognosis at this point. We've heard as low as 30% from a doctor we didn't end up staying with and Dr. E has seen around 60-70% with his protocol. At this point I am afraid to get my hopes up but we fight on. If we could do it differently, we would have pushed more to start TIP after his lymph node was surgically removed instead of waiting around for the margins to be double checked, etc. The urologist wanted him to do the chemo no matter want and the oncologist and tumor board were pushing for surveillance. I am continually terrified about chemo and side effects but he has to be here for it to matter so I guess we will cross that bridge if/when we come to it.

                          Comment


                          • #14
                            Hi Skywalker, great news that your husband is responding well so far. You're both in my thoughts and I hope it continues to go well for your husband. Thank you for your input it is very much appreciated.

                            Comment

                            Working...
                            X