Chemo Option BEP vs. EP

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  • Dylan
    Registered User
    • Dec 2005
    • 12

    Chemo Option BEP vs. EP

    Hello

    Sorry for the repeat for anyone but realise my question may be more relevant in this forum.

    I am 25 years old and I have been diagnosed with stage II non-seminoma, mix of embryonal, choriocarcinoma and yolk sac. The good news is only 2 nodes affected, approx. 2cm. enlarged and low HCG level (2.4) which put me in the "good" or "low risk" category.

    My concern is over the use of bleomycin in my chemo protocol. I'm a scuba diver and athlete and don't want these to be compromised when I get through all this in ship-shape (which of course I will). I've been given the option of 4xEP vs. the 3xBEP regimen so decided to take it.

    I guess I'm just looking for some reassurance that this is an acceptable treatment option and if there is anyone else who has had this experience and can shed light on any adverse side effects with the more cumulative treatment.

    I'm suppose to start treatment on Mon. Dec. 12 so hope to hear from someone before that time.

    Thanks soooooo much for taking the time to read this. Much appreciated!!!

    Dylan
    Stage II Non-seminoma
    Embryonal, choriocarcinoma and yolk sac
    Diagnosed November 16, 2005
    Vancouver, Canada
  • dadmo
    Registered User
    • Oct 2004
    • 6284

    #2
    My wife and I are scuba divers and we hope to convince our son to give it a try, because of this the docs agreed to go with 4EP, what you do have to consider is the long term affects of the extra Cisplatin (the P part of BEP and EP). At the time of our sons diagnosis I was unaware that it could be detected in the body up to 20 years after the cessation of treatment. Since I am still hopeful that he will scuba and climb Mt. Rainier with me I think the decision was the correct one.
    Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

    Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

    Comment

    • Kman99
      Registered User
      • Jul 2005
      • 143

      #3
      Dylan..

      Welcome to the site and sorry about your news. You've found an excellent resource as you near the start of chemo. I'd recommend searching this forum for others who have been through chemo. And take a look through the attached link.

      BEP and EP are nearly identical in terms of cure rate, but obviously differ in length and side effects. Talk w/ your doc and definitely do as much research on your own as you can. If you are an athlete, who dives often and concerned about lung toxicity, from what I have read, then your best bet is to opt for the EP protocol.

      Another suggestion, is to ask your question directly to a TC expert like Dr. Einhorn. He is very receptive to emails! His opinion might help you make a decision. I am sure you could get his email address from others on this forum.

      Good luck and send an update w/ your decision and progress.


      _____________________________________________

      Left I/O 5/7/05, Stage 1(pT1)
      No VI or LI, Normal Markers
      70% Embryonal, 30% Seminoma
      Surveillance
      1st child born on 8/08

      Comment

      • mikeygti
        Registered User
        • Jan 2005
        • 136

        #4
        Hey Dylan,

        Welcome from a fellow Canuck !

        I found that the BC Cancer agency was familiar with both protocals (3x BEP and 4x EP) when chemo was in my picture. Not being a diver (other than snorkeling in Maui ) I decided that BEP with it's 3 cycles was my preference.
        In your case,the 4 x EP would be a legit choice with diving being one of your pursuits.

        Best Wishes
        Dec/04-Right I/O-nonseminoma (95%E/C),Stage 1, surveillance
        Nov/05- 2.2 cm lymph node= Stage II A
        Nov/05 -Jan/06-3 x BEP
        Jan/06 -Surveillance



        ___________________________________________

        Comment

        • Chris'Mom
          Registered User
          • Mar 2005
          • 656

          #5
          Hi Dylan, my son Chris had four rounds of EP,,,,,Sloan I believe usually goes with that course of treatment....but in Chris' case, because he is a musician and sings they opted with that anyway. Chris is almost six months out of chemo.....he was one of the lucky ones, not one problem with neuropathy in fingers or toes (which as a piano and guitarist was what we feared) other than the pain of chemo, he is doing great. HOpe that helps...keep us informed.....Mary Ellen

          Comment

          • Chris'Mom
            Registered User
            • Mar 2005
            • 656

            #6
            One more thing....Chris also was put in the "Good Cure Rate" having an AFP 0f around 45 when chemo started....and 3 small nodes enlarged (which he did need RPLND after chemo because they did shrink, but teratoma was left)....and when we questioned four rounds vs. three, the oncologist at Sloan Kettering...said that with the dosages given today in smaller amounts, the risk of later cancers or problems is very small....so with that advice we went with four rounds....Mary Ellen

            Comment

            • Dylan
              Registered User
              • Dec 2005
              • 12

              #7
              Many Many Thanks

              Thanks-you everyone for your comments on this matter.

              Through my own research I am very confident in the outcome with the only thing weighing on my mind is if I made the right choice in treatment. Our goal in all of this is to be able to continue our lives just as they were before we were diagnosed but with a better outlook on life and the people in it.

              That is why I went with the 4xEP.....but there is no sense choosing that if it means I have a much less chance of even having a life at the end. Hearing from you has gave me the confidence now in my decision.

              Thanks Mary Ellen for the insight on the neuropathy. Mikey....it's a shame you never got to try scuba, it's a different world than snorkelling (GO CANUCKS!!). Kman.....didn't think of contacting Dr. Einhorn, nice to hear he is receptive and will give that a try, thanks. Dadmo.....have you dived in Belize? It's where I first dived and have since in many other places around the world and it remains by far the best. Thanks for your input.

              I will keep you informed with progress through treatment. Monday is coming soon.......scared but feeling better now.

              Thanks again,

              Dylan
              Stage II Non-seminoma
              Embryonal, choriocarcinoma and yolk sac
              Diagnosed November 16, 2005
              Vancouver, Canada

              Comment

              • Larry B.
                Registered User
                • Jul 2005
                • 58

                #8
                BEP was bad choice for me.

                Well, without getting into too much detail, BEP really sucked for me. You can read some previous post of mine and you will see why. Anyway, I just completed 4xEP and I have no bad side effects. Actually if you think about it, it really only adds one 1 week till end of treatments, being that you need 2 additional Bleo pushes at the end of cycle 3. Has a port been mentioned to you? I would strongly recommend it. I went the macho way and my arms look like they have been thru a war. Everyone is different in the way treatments affect them. I was pretty fortunate, and had no serious ailments from my treatments other than a reaction from the Bleo. You will do fine as long as you remember to drink plenty of fluids, take your nausea meds as required, and if you have problems post your concerns on here. I am sure someone here will have had similar problems, and share any advice with you. Good Luck and hang tough, it will be soon enough and you will be drinking your Molsons Golden again. (Man I had to say that, now I need to find some here in Memphis)
                Diagnosed 7/5/05, Rt. I/O 7/29/05, Nonseminoma Stage IIa, Started 3XBEP 9/06/05 changed to 4XEP due to reaction from Bleomycin. Currently surveillance.

                Comment

                • Chris'Mom
                  Registered User
                  • Mar 2005
                  • 656

                  #9
                  I agree about the port...the hardest part of four rounds for Chris was that by round 4, it took three or four nurses to try and find a vein on him....and sitting there watching him get poked over and over is not easy...I think they called it "Hiding Veins", but in the end he did get thru it without the port. Don't mean to scare you though....he says he would rather have done that than have a port, so its a personal decision Dylan. You will do fine...Mary Ellen

                  Comment

                  • Dylan
                    Registered User
                    • Dec 2005
                    • 12

                    #10
                    Port

                    Thanks for that

                    Nice to hear your story Larry. I've heard that treatments are similar but this is the first I've heard that EP was preferrable. I guess I can only hope I have a similar experience on EP.

                    Mary Ellen, I was going to ask you about the neuropathy. Do you know if the tingling or numbness at the end of fingers is just temporary? I've been playing guitar for 13 years and piano as well so have a bit of concern as with your son.

                    I will call my doctor about the port today. Do you know if it is a painful procedure to have that put in? or if it causes a lot of discomfort or gets in the way when you're not having chemo sessions?

                    As always, thanks soo much for your input.

                    Dylan
                    Stage II Non-seminoma
                    Embryonal, choriocarcinoma and yolk sac
                    Diagnosed November 16, 2005
                    Vancouver, Canada

                    Comment

                    • mrb1980
                      Registered User
                      • Jul 2005
                      • 117

                      #11
                      Chemo Port

                      Dylan,

                      I had a chemo port implanted back in August and it was one of the smartest moves I've ever made. The surgery was outpatient with general anesthesia, so you'll need someone to take you to the hospital and pick you up. The surgeon implanted the port under my skin with a catheter extending to my vena cava vein. Didn't hurt at all, just a little inconvenient. One minute I was climbing onto the operating table, the next minute I woke up in the recovery room.

                      I had the port removed today in the surgeon's office. It was about a 5-minute procedure and again, there was no pain. The surgeon injected some local anesthetic and the port was out before I knew it. My wife was there to hold my hand but the removal was no big deal.

                      Since I had 4xBEP, the port saved my arms from some serious needle-poking. The nurses used a special needle to access the port, and instead of the usual exploration for a suitable vein and the multiple needle-sticks involved, it was really easy and painless. I highly recommend a port, I'm glad I had mine (although I'm also very glad the thing's gone--it's a little uncomfortable).

                      Your choice for 4xEP was probably a good one, given your situation. I had Stage III embryonal carcinoma, so I had no choice but to undergo 4xBEP. The bleomycin irritated my lungs and I've had to see a pumonologist about it. I'll be okay, but the cisplatin and etoposide effects seem to be gone, and the bleo effects are still there.

                      I've no problems with neuropathy. Guess I'm lucky.

                      Good luck. Let us know how you're doing!
                      Left I/O 6/24/05
                      100% Embryonal Cell Carcinoma, Stage III
                      4xBEP August - October 2005
                      Surveillance since Nov. 2005

                      Comment

                      • nzsteve
                        Registered User
                        • Sep 2005
                        • 73

                        #12
                        Hi,

                        ref the guitar playing, I was lucky and didnt really suffer from neuropathy, but I did find the tips of my fingers got very sore if I played for more than a few minutes while having the chemo. Im a month out of my last cycle now, and im all back to normal.

                        Do call up about getting the port / a semi permanent line aswell - after loads of misses at the start of my third cycle trying to place the cannula they put a PIC line into my arm. Its been in for about 3 months now and I wish theyd done it for me at the start - much nicer than being stabbed everytime they want to give you drugs or take some blood!

                        Good luck,

                        Steve
                        Left I/O March 05, nonseminoma;
                        Relapse July 05, single lymph node 3cm;
                        2 x BEP Aug / Sept 05, node grown to 4.7cm;
                        2 x VeIP Sept / Oct, node grown to 6.7cm, markers normalised;
                        RPLND Dec 05, no active cancer;
                        back on surveillance

                        Comment

                        • rlhawk
                          Registered User
                          • May 2005
                          • 38

                          #13
                          I recommend a port also. There was absolutely no pain or discomfort when it was installed. They gave me local anesthetic, so I was somewhat conscious and I could hear the doctor and nurses talking during the procedure. It was only slightly sore for a few days.

                          I finished 4X EP three weeks ago and am only suffering from a few lasting side effects -- ringing in my ears and very minor numbness in my fingertips.
                          Left I/O 5/9/05, 100% Embryonal Call Carcinoma, Stage IIIa, Laparoscopic RPLND 7/19/05, 4X EP 9/05-11/05

                          Comment

                          • Dylan
                            Registered User
                            • Dec 2005
                            • 12

                            #14
                            Chemo Port

                            Thanks so much, guys

                            That sounds like pretty convincing evidence to get the port done.

                            I'm so happy I found this forum, my anxiety about this whole situation has decreased emensely knowing there are people close by to answer questions based on real experience.

                            T-minus 3 days till my first session. Can't wait to start killing this thing. I know the effects are very individualised but should I expect to be quite sick for the entire week?

                            Did any of you ever travel between sessions? either long car rides or perhaps a short flight? Just thinking if I may be able to go home (1 day car trip or 2 hr. flight) for christmas. Is this something I should talk to the doctor about?

                            Thanks again for your input. Much appreciated.

                            Dylan
                            Stage II Non-seminoma
                            Embryonal, choriocarcinoma and yolk sac
                            Diagnosed November 16, 2005
                            Vancouver, Canada

                            Comment

                            • nzsteve
                              Registered User
                              • Sep 2005
                              • 73

                              #15
                              Probably best to check with the Doc before making any plans for long travel. I was told to stay close to home during the chemo off weeks incase I picked up any infections. Treatment could get complicated if you got sick along way from the hospital where youre getting your chemo.

                              That said, I was very lucky during the chemo, and had no infections and very very little nausea (sick once, after my third bleo shot on cycle 1). Make sure you take the anti nausea drugs they give you, keep your fluids intact up and sleep if you feel like it. Try to keep eating aswell. As much as I didnt feel like it before hand, I always felt better after getting some food.

                              I was always very tired after coming out of hospital for the first 4 or 5 days, but by Thursday of the second week of the cycles I was back at work, managing about 4 hours a day and feeling pretty good. A day long drive would have been too much, but I probably would have coped OK with a 2hr flight in the 3rd week of the cycle.

                              Good luck for next week

                              Steve
                              Left I/O March 05, nonseminoma;
                              Relapse July 05, single lymph node 3cm;
                              2 x BEP Aug / Sept 05, node grown to 4.7cm;
                              2 x VeIP Sept / Oct, node grown to 6.7cm, markers normalised;
                              RPLND Dec 05, no active cancer;
                              back on surveillance

                              Comment

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