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Starting 3xBEP and looking for advice

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  • Starting 3xBEP and looking for advice

    Hi Everyone,

    I am starting 3x bep on Monday and I was hoping those here that went through that can provide some advice.

    My doctor recommended not getting a port or picc and start with regular infusion. Does this even have a chance of working for 3 cycles? Almost all Bep experiences I read involve a port or a picc.

    If anyone can share some tips on what they did to help alleviate some of the issues associated with chemo, I would appreciate it.

    How concerned should I be regarding hearing loss? Did anyone here experience this? I am terrified of losing my hearing.


    The doctor mentioned that chemo comes out of the pores and I should avoid skin to skin contact with others for 24 hours after treatment. During the long week, no hugging my wife or kids? How about putting in and removing contact lenses, is that a problem?

    Thank you for your help and expertise.
    Jacob
    Last edited by Jacob; 07-07-17, 07:46 AM.

  • #2
    I did 4xEP via regular infusion. It can be done if your veins are very healthy to begin with and your nurses are skilled. For the last two rounds though I did save my IV overnight. The docs and nurses were OK with keeping an IV in overnight. They flush it and test it the next day to be sure it is still flowing well. They said no more than two sessions per IV though.

    Hearing loss can happen, but is typically mild in <40yr old, otherwise healthy patients.

    I'll let the others field your other questions.
    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!
    3/29/2018 all clears up to this date!

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    • #3
      I did 3 x BEP without a line and I feinted a couple of times when they stuck/failed to stick the needle in correctly. Usually just after the phrase "I've hit a junction". That said I tend to sleep on my front so having a line in my chest would have caused (me) more sleeping problems.

      Jan 2009: RHS (Seminoma) & RT
      Mar 2010: LHS (Embryonal Carcinoma)
      Sep 2010: Relapse & 3 x BEP
      Mar 2015: Five years "nut free"
      http://doublezeroami.blogspot.com

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      • #4
        Thanks guys.

        Any insight into the contact lenses question? I am wondering if I can stick my finger in my eyes while I am undergoing chemo

        Comment


        • #5
          For years the treatment regimens were done with just peripheral IV access if the patient has sufficient veins. Several of the top experts I have spoken with still recommend doing it that way if possible. Ports and PICC lines are easier, no doubt, but they also seem to be a risk factor for developing blood clots. If you have a nice place that will leave the line in for a night or two then that is even better as far as sticks. Personally, although I did not have to make the choice, I would rather be stuck each day than develop a clot and need to be on extended injection of blood thinners.

          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

          For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

          Comment


          • #6
            Hello Jacob, I didn't go through BEP but I did go through 4xEP around this time last year. I went peripheral IV as I wanted to work in between rounds and a line would have been a hassle. A bit of trouble with finding veins toward the last round but not too bad. I took the meds as prescribed and didn't have have any nausea to speak of. Some sleeping pills took care of a problem sleeping too. I'm not one for taking medications but under these circumstances I did not play the hero and took whatever worked for what was bothering me at any given time.

            I can't think of a reason why putting contact lenses in would be an issue. It's your fingers and your eyes though you may be need to be more careful if you are feeling a bit shaky. As for no skin contact you could probably still hug your wife and kids..........but with your clothes on if you're worried. I was told to flush the toilet twice during chemo days. But no one could tell me why that was important as I didn't have a dog drinking out of it. Maybe some things are said out of an abundance of caution.

            I don't know about the hearing loss but being terrified of it isn't helping you any. Think of it as flying. All the worrying about what might happen isn't going to make any difference once you're up in the air. You have no control over what might happen. There may be some serious turbulence but the odds are highly stacked in your favor that you will land safely and all will be well. Good luck Monday. Eric.

            Comment


            • #7
              Thank you Mike, your point is well taken and I do feel better about peripheral IV.

              Grateful guy,
              Regarding the lenses, my doc said that chemo comes out of the skin for 24 hours. That's why I was concerned about putting in contacts.

              Thanks for the words of encouragement, I look forward to putting this behind me.

              Comment


              • #8
                In my case the doctor recommended the use of a port. Since on day one of my 3xBEP the surgery room was too busy, we opted for a picc in order not to loose a day. Doctor said that the picc is fine for limited amount of time and the 5 days was still ok. She completely ruled out the possibility of doing it through regular infusion since she said BEP is too toxic for the veins of the arm. I did not know about the higher risk of blood clot with port/picc, it was not mentioned to me, but indeed I was on injection of blood thinners for the entire period and for other 4 weeks after the last cycle. It is very important that they give you a lot of liquid all the time (day and night) in order to keep your kidneys as clean as possible. I had to go to the toilet every 1-2 hours for 5 days, it was not very convenient during the night, but I think this was very crucial. In my hospital, they asked me to write down the amount of urine that I was doing, and I remember that it was about 5-6 liters per day. No problem for me with hearing loss. All the best for Monday.

                Comment


                • #9
                  Hey man, I did without picc or port, can't compare but it was fine, painful, but hey, this is cancer so it's to be expected I guess... My hearing seems to be ok, no problems with wife and kid, lots of hugs, just flushed the toilet and twice after me and went back to condoms ;-)
                  July 2016 - Left I/O
                  December 2016 - BEPx3
                  All clear for 1 year!

                  My Testicular Cancer Support Kit
                  First Oncologist Visit Checklist
                  Simplify Cancer Podcast

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                  • #10
                    Wishing the best. Stay hydrated when out of the clinic/hospital. Walk daily if possible.
                    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.

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                    • #11
                      Thank you all for the great advice. Starting my journey through hell tomorrow. See you all on the other side!

                      Comment


                      • #12
                        HI Jacob

                        As of today, it has been 5 days since I had my port removed, after completing the 3 cycles of BEP. I don't do needles well. Especially when it is something that is going to be done on a constant basis. When I went in to have my port removed, a young lady put the IV into my arm and 5 days later I still have a bruise the size of a half dollar. I had one small blockage towards the end of my treatment but my RN used a slightly stronger blood thinner than the heparin that you get each treatment and cleared it out without a problem. I'm glad I opted for the port, rather than getting stuck every time. If you can tolerate it then, by all means, avoid the procedure to have it put in and taken out. It is not really that bad at all though. The removal took the surgeon all of about 8 minutes, the installation takes longer, I think it was about an hour or slightly longer. My oncologist preferred not to have me do it but, it was ultimately my choice and I know that since I don't do needles well, anything that will help ease the treatment, I felt I wanted. This helped me a lot.

                        As far as hearing loss goes, that is more of an issue if you did the 4xEP because the cisplatin is what does it. I had some tinnitus going into chemo from all the years of music, guns etc. It got a bit worse but I don't really notice it all that much. Your doctor can send you in for an audiology exam to get a baseline hearing test.

                        I was informed about some skin contact but only in terms of sexual intimacy. Because chemo can travel through any type of body excretion, she warned that if I was to get someone pregnant the baby and mother would have serious complications. Other than that I didn't get any type of skin to skin warning. You do want to make sure you wash your hands and stay away from sick people. Your immune system is going to be severely depressed and one infection can mean a weeklong stay in the hospital and postponement of your treatment till you're better.

                        Make sure you tell your caregivers at the hospital/treatment center everything that is going on with you before, during and after chemo. If you have hair on your head, expect it to start falling out by the mid to end of the last week of your first cycle (week 3). Since you're going to get a lot of fluid especially on your long weeks, you're going to be urinating a lot. This will, unfortunately, keep you up at night and you will feel most tired those long weeks.

                        The good news is that after all of this crap, you will be a lot better and if you caught it early enough you probably won't need surgery (we hope!). I got my all clear about 3 weeks ago and in a few months, you will too. Just stick to the game plan and come on here and communicate with others. Lastly, I can recommend going to any support groups available to you during and after treatment. This helped me a lot because, if you think you have it bad....trust me on this, there are others who have it much worse. The people I met in those groups really changed my outlook on life and it helped me move forward and same with this forum.

                        Best of luck,
                        ​Daniel

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                        • #13
                          Wow thank you Daniel I appreciate the thorough and well though out advice. This is why these forums are so so valuable. Thank you all for being here.

                          As for me:

                          Day one is done. I am feeling great. No issues with the stick or the meds going in. Aside from a slight light-headed feeling for a few minutes I was absolutely great.
                          Between all the drinking I did plus the fluids they gave me, I spent almost equal time in the bathroom as in the infusion room .

                          When I came home I felt the onset of nausea, popped a zofran and it disappeard.

                          So overall positive first day so looking forward to more of these. (Aside from the sleeping, I woke up at 2 am and haven't falling back asleep. It's now 3:30am)

                          Comment


                          • #14
                            Hey Jacob,

                            I went through BEPx3 with a port and from what the doctor told me it was a lot easier. they didn't mention to me anything about clotting before putting it in either.

                            As for the hearing, I have faint ringing in my ears that still hasn't gone away (finished on 1/10/17) but unless I'm in a room with complete silence I hardly notice it anymore. I was also told to use the double flush technique and we also ought Clorox wipes for the toilet just to be extra cautious. I was told that the drugs could come through up to 48 hours after being given chemo So we were pretty cautious til that period was over with anything sexual. But hugging was fine! And great point about being around sick people/kids, my white counts dropped significantly after each cycle where I had to have nupogen injections in between each 21 days. If you end up needing these i reccomend taking Claritin a few days leading up to the shot, as well as a couple days after as it is supposed to help with the bone pain, and did significantly for me (I did not know this tip before my first shot) glad your first day went well!

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                            • #15
                              My first cycle was the easiest, starting the second one it hit me hard.

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