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  • Post chemo scans not what we expected

    My husband was diagnosed in May, his cancer was quite advanced, there was a very large abdominal tumor, spots on the liver and many nodules in the lungs. The original plan was 4xVIP, but he had problems with the ifosfamide, so the remaining 3 cycles were all BEP. Last bleo was last monday, and first post chemo scans were thursday. Based on what we'd learned from the doctors and all I've been reading here on this forum over the summer, we expected the scans to show a sizable residual abdominal mass and the rest to be ok. We met with the oncologist who's been handling the chemo and he said he didn't know what to make of the scans because there are still nodules in the lungs and spots on the liver. The abdominal mass was pretty much what we expected to find. We are waiting to hear from the specialist in Boston that is overseeing the case to hear what he has to say, and so he can compare to the earlier scans that were done in Boston, because the doctor here does not have those and so is not sure if the lungs and liver have improved or not. We're also still waiting on the tumor markers to see if those have improved. While I wait to hear what he has to say, I'd like to know if anyone here still had cancer left in the lungs and/or liver after 4 cycles of chemo, and if so what was the next step? I want to be sure to ask all the right questions when they call us back. I have read here that the lymph nodes can continue to shrink for a few more weeks, can the lung and liver issues do the same? We were expecting the need for RPLND and we were really hoping that would be the next step and then we'd be done with this, now i wonder if there will have to be more chemo as well. We would love to hear from any one who had similar surprised on their first post chemo scans.

  • #2
    Knowing what the tumor markers are is going to be key as well. Without more details it is difficult to even guess what the next step might be. For example, bleomycin can cause post-therapy lung changes. I have not heard much about the next step for liver residuals so I am not sure if scarring occurs or even biopsy is possible.

    Are you seeing Dr. Christopher Sweeney in Boston?

    I wish I had more guidance to offer but there is just not enough information to tell what really may be going on. If additional chemotherapy is needed then asking about the TIGER Trial may not be a bad idea and they are recruiting patients in Boston. https://clinicaltrials.gov/ct2/show/study/NCT02375204

    I'm not mentioning a trial as a "last resort" type of situation but rather as there is a lot of debate if second line chemotherapy should be a standard dose chemotherapy or a high dose chemotherapy with stem cell rescue and that is what the trial is based on.

    Keep us posted as you get more information.

    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

    Comment


    • #3
      Ugh!!!! I think Mike makde a good suggestion about trial info. Hoping you update us, and it will be with reassuring news.
      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.

      Comment


      • #4
        Originally posted by Mike View Post
        Knowing what the tumor markers are is going to be key as well. Without more details it is difficult to even guess what the next step might be. For example, bleomycin can cause post-therapy lung changes. I have not heard much about the next step for liver residuals so I am not sure if scarring occurs or even biopsy is possible.

        Are you seeing Dr. Christopher Sweeney in Boston?



        Mike
        No, we are seeing Dr Lee at Mass general. The local oncologist was supposed to be contacting him and then getting back to us, but he and his nurse are now on vacation and didn't leave any info with the other staff for us, so we're going to contact Boston ourselves later today and find out what's up. We DID get the tumor markers back, HCG is down to 475, and since it started out at over 80,000, I have to assume something has been working.

        Comment


        • #5
          I am not familiar with Dr. Lee so unfortunately, I can't offer much from that standpoint. It may be worth reaching out to Dr. Sweeney's office to see what they think. http://doctors.dana-farber.org/direc...ict_id=9787256 He is certainly recognized as a testicular cancer expert and having personally met him several times, I can tell you he is a great guy as well. Just a thought.

          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

          Comment


          • #6
            We were finally able to go over the scans with the doctors in Boston yesterday, and the lymph nodes and the nodules in the lungs did shrink. Since the tumor markers are still elevated (although they are DRASTICALLY improved) and the abdominal tumor is still too large to easily removed they are thinking moving onto either TIP or VeIP is the best next step. The question right now is that although everything else is shrinking and looking a lot better, the liver is worse. Several weeks went by between the initial scans and the start of treatment, and we know other stuff grew rapidly during that time (the abdominal tumor caused a visible bulge that we could easily see getting bigger and bigger) so it's possible the liver just got a lot worse during those few weeks and perhaps it is responding to the chemo. If that's the case then more chemo is still a good step, but they want to do a liver biopsy to make sure it's not separate issue that needs a different treatment. So they were going to try and get him in for the biopsy next week, but we found out this morning it's not going to be until the 12th. Since I'm sure it will be a few days before we have results, that means it's going to well over a month between the end of the BEP and the start of the next treatment. Is that an acceptable amount of time? I like that it gives him time to regain some strength, so he can start this chemo in better shape than he did the first time and maybe handle it better, but I worry about stuff spreading again. The doctors were confident that doing a biopsy next week and going from there would be fine, but the worrier in me is concerned that it will be the following week now and is that just too long? Has anyone else gone from BEP to second line chemo and how long did you have in between? Also, any thoughts on whether TIP or VeIP is the better choice? They are checking tumor markers again so I plan to ask all this when they call with results, but I really like hearing from people who have been through it before.

            Comment


            • #7
              I would email Dr. Einhorn to see what he thinks. Maybe someone else with more knowledge of TIP or VeIP will chime in.
              So sorry your husband has to endure additional treatment, and can't imagine how you or him are processing all this.
              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.

              Comment


              • #8
                Originally posted by Trekga View Post
                I would email Dr. Einhorn to see what he thinks. Maybe someone else with more knowledge of TIP or VeIP will chime in.
                So sorry your husband has to endure additional treatment, and can't imagine how you or him are processing all this.

                After I posted I actually found an article he wrote about second line chemo and how long after BEP to do it and now I'm feeling a lot better about it. The article has me thinking we should request new scans shortly before starting, which I'm sure we can do when we go back for the biopsy. Been an up and down week here, but the doctors were pretty positive about things and that article helped too. Still love to hear first hand experiences though, hope some people who have done TIP or VeIP can chime in.

                Comment

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