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1 x BEP for stage 1b non-seminomas

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  • 1 x BEP for stage 1b non-seminomas

    Hey Guys,

    I was a stage 1b non-seminoma where I had a 50% chance of relapse. I struggled with the decisions that were in front of me. I couldn't see myself doing surveillance, so I debated RPLND and 1 x BEP. I just wrote a post about the pros and cons of the RPLND. I finished 1 x BEP in September. I know there are many out there that are in the position that I was in and are struggling to make a decision about what to do. I wanted to mention some of the pros and cons of doing 1 x BEP for those with stage 1b non-seminoma. Hopefully this helps someone out there. Also, if there are any others that have done 1 x BEP, it would be great to hear from you guys as well, about the experience, decision-making process, etc.

    Pros:
    - biggest pro is the low relapse rate of about 3.5%. It doesn't get much better than that! You have a 96.5% chance of avoiding 3 x BEP which is extremely heavy chemotherapy.
    - avoid highly invasive brutal surgery which is less effective, especially when cancer is found in the lymph nodes
    - incredibly effective against Embryonal carcinoma which my medical school textbooks indicate "has the ability for early hematogenous spread". That means that even if you have completely clear retroperitoneal lymph nodes, there is an 8-10% chance that the Embryonal carcinoma can skip the retroperiteoneum and shoot directly to the lungs via the vascular system. I would double check that number (8-10%) with an expert TC oncologist. "Skipping the lymph nodes" does happen, but it is rare. I was speaking to my oncologist the other day and he just had a patient with Embryonal carcinoma who was about to start 1 x BEP. Then imaging was done just before starting therapy and a lung met was seen, the retroperitoneum was empty and now the patient has to start 3 x BEP. Skipping the lymph nodes does happen but it seems to be rare. I would discuss this with an expert TC oncologist such as Einhorn or Nichols to be fully informed.
    - it's heavy chemotherapy, but the physical recovery is very quick. You will likely recover back to full strength and endurance in a few weeks.

    Cons:
    - Einhorn wrote in one of his publications "the long-term health risks of 1 x BEP are unknown". We do know that 3 x BEP increases the risk of heart attack and stroke later in life. It also can lead to secondary malignancies, the most common being Etoposide induced acute myeloid leukemia. It's a very aggressive and highly fatal leukemia. This is rare and tends to occur in the first 5 years after Etoposide exposure. Increased dose increases the risk. However, there have been cases where even 1 cycle has caused this. This is why I strongly disagree with oncologists that give 2 x BEP adjuvant therapy. That's just too much for "prevention". On a side note, this is also why I prefer 3 x BEP over 4 x EP.
    - journal articles state that at "standard doses" (I suspect this means 3 x BEP ??) Cisplatin can be detected in the blood for 10-20 years later. It's probably not as detectable with 1 cycle, but still something to consider. Heavy metals in the blood can't be a good thing.
    - it's heavy chemotherapy and you will feel like you were hit by a truck. It's not like carboplatin for seminomas.
    - Bleomycin lung damage: some very minor loss in diffusion lung capacity can happen, but with 1 cycle nothing that you will notice even with vigorous exercise
    - Cisplatin kidney damage: this won't happen with 1 cycle. They hydrate you before and after the infusion to prevent this.
    - Peripheral neuropathy and tinnitus: you may get a little bit of this, but unlikely to be permanent with 1 cycle
    - Raynaud's phenomenon caused by Bleomycin: you may get a mild version of this even with 1 cycle
    - Hair loss: 100% of people get this. Don't underestimate how psychologically difficult this can be. It wasn't easy for me to see chunks of hair falling out!! (And I didn't expect it to be difficult)
    - Chemo brain: you'll get this for a few weeks. It manifests as forgetfulness, lack of concentration, difficulty finding words. It is temporary.
    - Neutropenia: approx 20% get this. If you get a fever during neutropenia it is a medical emergency requiring hospitalization and antibiotics. The vast majority of people will do fine then. You can have white blood cell booster shots to prevent neutropenia.

    That's all for now. Hope it helps someone out there. PM me if you have any questions at all!!
    Last edited by RJKD; 01-19-16, 02:01 PM.
    Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

    7/1/2015: felt tiny lump on side of R testicle
    7/30/2015: Ultrasound shows 2 intra-testicular masses.
    7/31/2015: tumor markers normal, CXR clear
    8/5/2015: R orchiectomy
    8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
    8/14/2015: CT abdomen/pelvis clear, Stage 1b
    8/24/2015: started 1 x BEP

  • #2
    I agree with this. Regarding the likelihood that EC will skip the retroperiteoneum, Sheinfeld called it 5-6%. With 95% of relapses occurring during year 1 and 98% being within year 1-2.

    Comment


    • #3
      No offense to those that found 1xBEP difficult, but as a 32 year old male having gone through 4xEP I think 1xBEP would be a cakewalk. On my first round of EP I even went to the mall and ate at a restaurant the Saturday after Chemo. I really basically just felt like I had a stomach bug and cold for a few days after the round and that was it. This would be significantly easier on the body in the near-term than an RPLND. However, from what I gather the field of oncology is still learning about the long term health effects of EP/BEP since they are relatively new. No-one has been around for 40+ years aftwards to learn about how it affects your later life. For me with potential lung mets and a distant neck lymph node an RPLND would not have cured me. So 4xEP most likely has saved my life. Hard to complain significantly about long term effects given this.
      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: begin 4xEP, end 9/18/15
      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!
      10/22/19: all clears up to this date!

      Comment


      • #4
        Originally posted by biwi View Post
        No offense to those that found 1xBEP difficult, but as a 32 year old male having gone through 4xEP I think 1xBEP would be a cakewalk. On my first round of EP I even went to the mall and ate at a restaurant the Saturday after Chemo. I really basically just felt like I had a stomach bug and cold for a few days after the round and that was it. This would be significantly easier on the body in the near-term than an RPLND. However, from what I gather the field of oncology is still learning about the long term health effects of EP/BEP since they are relatively new. No-one has been around for 40+ years aftwards to learn about how it affects your later life. For me with potential lung mets and a distant neck lymph node an RPLND would not have cured me. So 4xEP most likely has saved my life. Hard to complain significantly about long term effects given this.
        I will be the first to admit that I'm not the toughest guy around. I was 31, 5'7, 145 lbs, pretty small guy and definitely not built very strong. So for me 1 x BEP was tough, and I admire anyone who has been through much more and toughed it out so well. I also didn't have the emotional support during my ordeal and I feel that played a role as well. But I do know many people who did 1 x BEP who were shocked at how hard it was. I think it also has a lot to do with our expectations going into treatment. I just want those making these decisions to know that 1 x BEP 'can' be difficult. For some of course, it's not that bad. Everyone responds differently to treatment and everyone has different expectations when going into treatment. My advice to people is to talk to several people who have had the treatment and make sure your loved ones are around if possible as well.
        Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

        7/1/2015: felt tiny lump on side of R testicle
        7/30/2015: Ultrasound shows 2 intra-testicular masses.
        7/31/2015: tumor markers normal, CXR clear
        8/5/2015: R orchiectomy
        8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
        8/14/2015: CT abdomen/pelvis clear, Stage 1b
        8/24/2015: started 1 x BEP

        Comment


        • #5
          It's true, everyone's chemo experience is different. My only real complaint going through 3XBEP was extreme fatigue, a touch of nausea after the long weeks, ringing in the ears & some nueropathy in my fingers.The kid in the bed next to me had nausea that was not even controlled by the IV meds. We are all different & respond differently to the meds.

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

          Comment


          • #6
            I think Biwi is right and the field is also constantly evolving. I think this site needs to be a little more open to the fact that there is not a one size fits all approach to this treatment. My husband sounds physically very similar to you RJKD and he had a terrible time with EP in the end only doing 3 rounds with stage 1b non seminoma. Potential lung mets so the surgery wouldn't have helped him either. Hopefully, all will be well and ill be able to post all clear in 5 years!

            Comment


            • #7
              Originally posted by Bones View Post
              I think Biwi is right and the field is also constantly evolving. I think this site needs to be a little more open to the fact that there is not a one size fits all approach to this treatment. My husband sounds physically very similar to you RJKD and he had a terrible time with EP in the end only doing 3 rounds with stage 1b non seminoma. Potential lung mets so the surgery wouldn't have helped him either. Hopefully, all will be well and ill be able to post all clear in 5 years!

              Hope your husband recovers quickly! Did he end up having lung mets? Was there a decrease in the size of the opacities seen on CT scan after his chemo? If they were actual lung mets, then he was stage III and not stage 1b. Also, if he had lungs mets the 3 x EP should be increased to 4 x EP to ensure cure.
              Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

              7/1/2015: felt tiny lump on side of R testicle
              7/30/2015: Ultrasound shows 2 intra-testicular masses.
              7/31/2015: tumor markers normal, CXR clear
              8/5/2015: R orchiectomy
              8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
              8/14/2015: CT abdomen/pelvis clear, Stage 1b
              8/24/2015: started 1 x BEP

              Comment


              • #8
                Originally posted by Bones View Post
                I think this site needs to be a little more open to the fact that there is not a one size fits all approach to this treatment.
                I definitely agree that treatment should be tailored to each individual. For example, those with significant lung disease should certainly stay away from Bleomycin. The different options for treatment is an interesting topic for me. An example is the debate between 3 x BEP and 4 x EP. For the most part the standard of care is 3 x BEP for those with metastatic disease. MSK loves 4 x EP, but I personally feel that this is not the best for the majority of patients. I feel that MSK partly pushes 4 x EP because it was developed there. There is some ego involved. Having said that, I do believe they are convinced that 4 x EP is better than 3 x BEP with respect to side effects, but I feel they've convinced themselves and prior biases are playing a huge role here.
                Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

                7/1/2015: felt tiny lump on side of R testicle
                7/30/2015: Ultrasound shows 2 intra-testicular masses.
                7/31/2015: tumor markers normal, CXR clear
                8/5/2015: R orchiectomy
                8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
                8/14/2015: CT abdomen/pelvis clear, Stage 1b
                8/24/2015: started 1 x BEP

                Comment


                • #9
                  Just want to say thanks RJ, for being so open and putting these topics out there for discussion. That's what this forum is all about!

                  Comment


                  • #10
                    Originally posted by RJKD View Post
                    I do believe they are convinced that 4 x EP is better than 3 x BEP with respect to side effects, but I feel they've convinced themselves and prior biases are playing a huge role here.
                    Seems to me the worry over bleo is way overblown. Very few seem to have lung problems from it. However extra exposure to cisplatin certainly seems to be more problematic in terms of long term side effects, just based on what folks have reported in here.

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

                    Comment


                    • #11
                      RJ - Great list of pros and cons! After my diagnosis, I was presented with all 3 treatment options (surveillance, chemo, RPLND) and quickly eliminated surveillance. Although effective for most patients, I just couldn't see myself dealing well with the waiting game. In weighing chemo vs. RPLND, one of the biggest determinants for me were the odds of relapse. I met with medical and surgical oncologists from both Johns-Hopkins and Indiana, all of whom told me that the relapse rate with either treatment method was 20% (for Stage IIA with low-volume spread). Ultimately, I chose RPLND after speaking with the surgical oncologists. They explained to me, in great detail and with video aids, that the majority of RPLND complications occur in post-chemo RPLND patients. If I chose the open RPLND, and relapsed, I would still be afforded chemo. If I chose chemo first, and needed an RPLND afterward, I would be at much higher risk of complications. In your list of pros and cons, this is something I think should be included for completeness. The RPLND was no joke, as I'm sure chemo is not either. I feel very fortunate to have a disease where there are multiple treatment paths available.
                      3/16/15: Urologist visit for suspicious lump. Tumor markers negative. Ultrasound showed solid mass.
                      3/18: Radical left I/O.
                      3/24/15: Pathology: 100% EC w/ LVI present. Chest CT clear, Abdo CT shows 3 enlarged nodes (1.0, 1.1, 1.6cm). Clinical Stage IIA.
                      5/4/15: Primary (open) RPLND w/ Dr. Foster at IU. 34 nodes removed, only 2 had presence of EC. Pathological Stage IIA.
                      June 2015: First ALL CLEAR!
                      August 2015: ALL CLEAR!
                      September 2015: Post-RPLND baseline CT scan ALL CLEAR! Lymphocele measuring 9x5x5cm was noted, surgeon said it was harmless and should resorb within a year.
                      November 2015: Bloodwork and chest x-ray clear
                      February 2016: Bloodwork, chest x-ray, CT scan clear
                      July 2016: Bloodwork, chest x-ray clear (CT scan in September)

                      Comment


                      • #12
                        Thanks Rickandsabri! I really want patients to be able to make as informed a decision as possible, especially since I think doctors do a horrible job at giving patients the pros/cons of each treatment.

                        Dave, I definitely think the worry over Bleomycin is overblown. It's actually the agent I feel that is the least harmful out of the three! Cisplatin is certainly a worrisome one. Thankfully, the doses of cisplatin for testicular cancer treatment have been decreased considerably since it's initial use.

                        Dcnovachris, if I had clinical stage IIA there is no doubt I would've done an RPLND. I strongly favor this option over the others for those with clinical stage IIA. However, I do think the relapse rate is far less than 20% with 3 x BEP/ 4 x EP (either of which would be the recommended chemo regimen for clinical stage IIA). It's closer to about 5%. However, I still think RPLND is the superior choice because it gives an 80% chance at avoiding 3 x BEP in that situation. Yes, 20% of people will require double therapy (RPLND + 3 x BEP), but I still strongly favor RPLND in stage IIA cases. Also, a significant percentage of people with clinical stage IIA will actually be down-staged to stage I after RPLND! These same people would be significantly overtreated if given 3 x BEP from the start.
                        Last edited by RJKD; 01-23-16, 08:22 PM.
                        Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

                        7/1/2015: felt tiny lump on side of R testicle
                        7/30/2015: Ultrasound shows 2 intra-testicular masses.
                        7/31/2015: tumor markers normal, CXR clear
                        8/5/2015: R orchiectomy
                        8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
                        8/14/2015: CT abdomen/pelvis clear, Stage 1b
                        8/24/2015: started 1 x BEP

                        Comment


                        • #13
                          Originally posted by RJKD View Post
                          Dcnovachris, if I had clinical stage IIA there is no doubt I would've done an RPLND. I strongly favor this option over the others for those with clinical stage IIA. .
                          I am curious as to why you would favor RPLND? My experience with it has been worse than most here,probably because I had mine in the mid 70's, but still, I had my 3rd small bowel obstruction in 2015, 40+ years after the RPLND. Each one of those could have killed me & I was near dead at the er for the second. I've been opened up twice to fix the problem. The surgery was totally unneeded to cure my cancer.I was already cured by the I/O, even way before BEPx3 was an option.

                          I would personally recommend avoiding RPLND unless that is the only way to rid your body of cancer. Otherwise, you are just gambling your future health for an unproven benefit
                          Last edited by Davepet; 01-24-16, 01:31 AM.
                          Jan, 1975: Right I/O, followed by RPLND
                          Dec, 2009: Left I/O, followed by 3xBEP

                          Comment


                          • #14
                            Hey Dave, it's nice for people to see from your experience that the RPLND can have long-term complications. Sorry you've had to go through all that. I can understand from your experience why you feel that than RPLND should be a last resort. That's completely understandable. However, with current surgical techniques with a high volume surgeon I would expect the VAST majority of people do not have the complications that you have had. This is particularly true for a primary RPLND. It is important to have a high volume surgeon performing this surgery. The lymph nodes that are dissected are located around critical vessels such as the the aorta and vena cava as well as the renal vessels. With a high volume surgeon I would have little hesitation to have this done for clinical stage IIA disease. I still feel that if 3 x BEP can be avoided with an RPLND, then that should be tried first. My main concern is with the long-term health complications with so much chemotherapy in mostly young males. Also, the loss of fertility risk is higher with 3 x BEP than with an RPLND. Also, a significant number of people who undergo the RPLND will be down-staged to stage 1. Unnecessary surgery is better than unnecessary chemotherapy, particularly 3 cycles of BEP which is heavy chemotherapy. Also, the vast majority of people who have had RPLND and 3 cycles of BEP would say that they would prefer an RPLND over 3 cycles of BEP if they had to do either again (this is taken from Dr Craig Nichols in an interview done on the testicular cancer resource page).

                            Now with respect to stage 1b, comparing 1 x BEP and RPLND is a bit more difficult. 1 x BEP is significantly less chemotherapy than 3 cycles, and it is extremely effective adjuvant therapy. I still lean towards RPLND in the majority of stage 1b cases, particularly if there is a high percentage of teratoma in the primary. If there is a high percentage of chorio, I would stay far away from an RPLND as chorio loves to spread hematogenously. A high percentage chorio is extremely rare though. With predominant embryonal carcinoma it's a bit of a difficult situation....I think one can make a strong argument for either 1 x BEP or RPLND for adjuvant therapy. I still like the RPLND as it can give a lot of information that is impossible to obtain in any other way. I also think in all the above cases surveillance should be strongly considered, but this really depends on the right personality type for it.
                            Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

                            7/1/2015: felt tiny lump on side of R testicle
                            7/30/2015: Ultrasound shows 2 intra-testicular masses.
                            7/31/2015: tumor markers normal, CXR clear
                            8/5/2015: R orchiectomy
                            8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
                            8/14/2015: CT abdomen/pelvis clear, Stage 1b
                            8/24/2015: started 1 x BEP

                            Comment


                            • #15
                              Originally posted by RJKD View Post

                              I definitely agree that treatment should be tailored to each individual. For example, those with significant lung disease should certainly stay away from Bleomycin. The different options for treatment is an interesting topic for me. An example is the debate between 3 x BEP and 4 x EP. For the most part the standard of care is 3 x BEP for those with metastatic disease. MSK loves 4 x EP, but I personally feel that this is not the best for the majority of patients. I feel that MSK partly pushes 4 x EP because it was developed there. There is some ego involved. Having said that, I do believe they are convinced that 4 x EP is better than 3 x BEP with respect to side effects, but I feel they've convinced themselves and prior biases are playing a huge role here.
                              Hi,
                              So first follow up starts next week with bloods and then a CT, fingers crossed and Ill let you know!
                              As far as the EP vs BEP debate. Our Oncologist had actually experienced both personally. He felt that looking at my husbands age and lifestyle (42 - mountain biking, young kids etc) for his disease he favored EP because of the lower side effect profile.
                              Its so hard to say as a patient because (hopefully) you won't experience both, we just have to find a Doctor that we trust, do our own homework and then just hope for the best! I don't think anyone else on here had 3 EP so Ill def post follow ups, just in case anyone else ever finds themselves in the similar situation.

                              Comment

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