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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


                • #9
                  Update: We finally got the liver biopsy results back, and it was good news: no cancer in the liver! So now we're just waiting for the oncologists to consult with the surgeon as to whether to operate or do more chemo first. Since HCG was still elevated at last check and the surgeon said before he thought the abdominal mass is still big enough to complicate surgery I think they will recommend more chemo, but either way we're feeling MUCH better about things now that the liver is not a concern.

                  Comment


                  • #10
                    Take the good new- no canceer in the liver!!! Hoping those who have done TIP or othersecond line chime in soon. Hugs to you for having to go through 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


                    • #11
                      hi Metcwife

                      great news about the liver!

                      what was the original tumor type in the testicle? (assuming it started there)

                      How come they wanted to start with 4*VIP instead of 4*BEP? It is very unusual.

                      With regards to the choice between TIP and VEIP i remember they are very similar in effectiveness.

                      I hope the surgery will make things clearer and easier for you.

                      sanis

                      Comment


                      • #12
                        Originally posted by sanis View Post
                        hi Metcwife

                        great news about the liver!

                        what was the original tumor type in the testicle? (assuming it started there)

                        How come they wanted to start with 4*VIP instead of 4*BEP? It is very unusual.

                        With regards to the choice between TIP and VEIP i remember they are very similar in effectiveness.

                        I hope the surgery will make things clearer and easier for you.

                        sanis
                        the original pathology was vague, the only part we know for certain is the testicular tumor contained teratoma and we're not sure what else. This whole thing started during a routine hernia operation. The abdominal mass was discovered when the surgeon thought things just didn't look right in there and ordered a CT that revealed a HUGE tumor which was then biopsied, and those results were very vague. No one here could figure out what it was, so we were sent to a gastrointestinal oncologist in Boston. She ordered lung and liver scans and a review of the biopsy. Someone down there determined that what little info there was from the biopsy indicated the mass was urological in origin. So, she passed it onto a colleague in that department, and he immediately thought the spread was typical of testicular cancer and took over the next appointment we were scheduled for. We were kind of confused as to why we'd changed departments, and totally floored when he walked in the room and said "I bet I'm going to find a tumor in your right testicle" and then he did! He drew blood for tumor markers and ordered an ultrasound. LDH was elevated, and HCG was well over 80,000 (closer to 85,000 I think...). It dropped quick with chemo, and was down to 475 the last week of treatment. When he had the testicle removed they did some other tests and exams to rule out other urological cancers, just to cover all the bases.The abdominal mass is still large, but significantly reduced, and everything in the lungs is smaller and the doctor did discuss with us that what's left there could be teratoma and need to be removed. Now that we know what's left in the liver is necrosis, I'm wondering how much of the other stuff that's left could be as well. Since the tumor makers are vastly improved but still not normal I assume there is some live cancer in there somewhere.

                        The choice to start with VIP was due to the extensive lung metastasis, the doctor wanted to protect the lungs in case he needed surgery on them later. They did not want to do EP because the cancer was so advanced, there was a LOT going on in the liver and lungs, and the abdominal mass was so large and growing so fast that by the time chemo started, there was a large visible bulge on his stomach and it was causing a lot of problems, pressing on the vena cava and making his leg swollen and extremely painful, and he had to have a ureteric stent put in because it was also blocking flow from the kidney. We would have stayed with the VIP if the ifosfamide hadn't caused bleeding, and that is why we are a bit concerned if he has to move on to TIP or VeIP.

                        I know TIP and VeIP are both good options as far as effectiveness goes but I'm really hoping to hear first hand experiences on what they are like. My husband's only major complaint with BEP was constant nausea, everything else was stuff that we could predict and manage. He was in pretty bad shape when he started though, and now he's had a change to regain some strength, and I am hoping that the fact he'd be going into this a lot stronger to start might make a difference.

                        Comment


                        • #13
                          So sorry for your husband's ordeal and yours too! If no one responds here with personal experiences, I would make a new post about those who did TIP pr VeIP.Also FB groups, I know there have been a couple recently.
                          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


                          • #14
                            hi there,

                            It can also be that the live cancer he has is in the abdomen and mainly teratoma which is not very responsive to chemo (but surgery can make wonders). So the RPLND might solve the issues assuming that the lung spots keep decreasing. But I understand most surgeons would prefer to achieve a normal tumor marker before the surgery. Especially as teratoma rarely releases BHCG... So I see why they would prefer another chemo before the surgery. Maybe a PET-CT would help to distinguish between EC/ yolk sac and teratoma (?) though, just thinking out loud.


                            Trekga,

                            I would also be happy about reading success stories with second and or third line chemo. My issue is that I cant get high dose chemo in my country so upon a remission I also get VIP / TIP... And i dont know much about side effects etc.

                            Comment


                            • #15
                              Originally posted by sanis View Post
                              hi there,

                              It can also be that the live cancer he has is in the abdomen and mainly teratoma which is not very responsive to chemo (but surgery can make wonders). So the RPLND might solve the issues assuming that the lung spots keep decreasing. But I understand most surgeons would prefer to achieve a normal tumor marker before the surgery. Especially as teratoma rarely releases BHCG... So I see why they would prefer another chemo before the surgery. Maybe a PET-CT would help to distinguish between EC/ yolk sac and teratoma (?) though, just thinking out loud.


                              T
                              That's what I've been thinking too, and one of the options that was presented to us the last time we saw the doctor (before the liver biopsy) was to do the RPLND and keep an eye on the lungs for now and then operate on them later, but of course at that time there was the question of what to do about the liver. The surgeon was there too, and he felt more chemo first was better, primarily because the abdominal tumor is still big and he thinks he'd have to graft the vena cava if he operated now. But if it's mostly teratoma or necrosis, then it's not going to change much. The other option we were given was straight into chemo, but since the liver looked worse on the post chemo scans we opted for the biopsy first. Glad we did, knowing there is no more live cancer in the liver is a HUGE relief! The oncologist said he'd consult with the surgeon again now that we know more, hopefully we'll know soon which option they are most comfortable with.

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