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  • 3xBEP: My Advice, my experiences etc...

    I have another thread:

    Coping with radiation, chemotherapy, RPLND, or surveillance: treatment issues, test results, surveillance reports. Talk about what's going on with you!


    with much of this info throughout...but I've rec'd several private emails asking for advice so I thought I'd bullet point out things, related to my 3xBEP experience. Much of this was gained from this forum, but I used it and had some thoughts from my own experience...hope it helps.

    - eat well..I stopped eating...red meat/pork/eggs/dairy during chemo as most books say this is difficult to digest...I hunt/fish and am a big red meat eater, not a vegetarian for what it is worth. I did eat tuna, chicken, "rice dream" & soy milk. My idea was to tax the body as little as possible.

    - take anti nausea meds, for me the zophran worked fine, thru monday night after your week hospital stay...mine lasted 12 hours per dose. When not in the hospital, when you receive the bleo push, I would take it the monday am of my bleo push and monday night to last me thru tues am...that seemed fine...no nausea.

    - for the bleo...the first hospital push and the subsequent monday push...no problems...then I fought the chills and fever after that. I found that an advil before the push, and then advil as prescribed for the next 12 hours...with one benedryl just before bed....really, really helped...I might get a fever, but only 100.8 or so...without this I would top out at 103.5 to the record for me of 104.3...thank the forum for this advice.

    - if you get hiccups they may give you an anti psychotic medication...I do not recall the name...there are 3 possible doses...10mg, 25 and 50...the 10 mg did not work for me...this only happened during my 2nd cycle, day 2. I did not want the higher doses as the meds made me feel "fuzzy." But, I'm told it works on most everyone...

    - I had some acid reflux during 2nd cycle and combined with the weak esophageal lining...it hurt...I did not say anything to the nurses...but when I did, the nexium and magic mouthwash was a godsend...my magic mouthwash contained: tylenol, benedryl, maalox, caraphate (spelling?) and lidocaine...instant relief and the caraphate coats the espophagus.

    - constipation: happened to me after 3rd stay in hospital. advice...don't sit on the toilet for 2 hours like I did...(I never had constipation before)....I took stool softener and drank prune juice...no problems after that....my sister told me that they make suppositories for constipation that work much faster (she learned during her pregnancy)....hate to share all this, but it may help someone.

    - mental: I did not find chemo that bad...the first round was fine...2nd round tough due to the acid reflux (which I could have minimized had I said something) and the 3rd round was not bad except for the constipation (again, could have minimized)....the hardest part is mental...the feeling a little better, and then getting tired as could be...then better....then tired....as soon as you accept that you are in treatment and will get tired, you relax and accept it....usually we are all used to as soon as you start feeling better, you keep getting better...with the cycles of treatments there are several ups and downs. Just accept this - get tired...lay down.

    - fluids: drink, drink, drink water....you learn from the nurses and observing how much they pay attention to urine output, that flushing the kidneys is the key...I kept a 2.5 gallon gresh water jug by my bed, with paper cups and was drinking regularly.

    - set a goal: I'm embarrassed to share this part, but I decided i would stretch a little each day...try to touch my toes, which I have not been able to do since I was too young to remember....so I decided I would be able to touch my toes by the end of chemo...well, I did not do it, but I'm pretty darn close...and it's good to feel like you are doing something. You can see some progress each day.

    - the hair: if you have kids, mine are young at 11 and 10...I let them shave my head, with clippers, before the hair fell out. It was the single smartest thing I did...they felt like they did it, not some scary disease. I recall being scared to death years ago when I saw my grandmother bald during chemo...I did not want this to happen to my kids...involving them was my solution. Personally, I thought losing the hair (as a full haired person) would bother me...as I sit here, with no hair yet, I could care less...it'll be nice when it comes back so I don't have to wear a hat in the sun...but it really means nothing now...wife, kids, family, friends...that is what gets my attention.

    - Mouthsores: I did not get these...but I read all about them on this forum...from the start, I brushed my teeth daily about 6-8 times (gently) with a natural salt toothpaste from whole foods market and rinsed each time with a natural citrus mouthwash from whole foods....I have no idea if this prevented the sores...but I did not get them.

    - What to expect: I will tell you all this - I would never have wanted this, and would not wish it on anyone...but having been thru it, it is an experience I would never want to give back. I'm hoping I stay in remission, but I still feel that way. You will make it thru, all the odds are with you...and I believe you will feel this way too...most do.

    If I think of anything else, I'll add it...but for now this is what is top of mind...
    - lump first noticed 11/20/2005
    - I/O right Dec 8, 2005
    - 95% embryonal / 5% seminoma
    - normal markers PRE surgery
    - no vascular invasion, tunica free of cancer, epididymis free of cancer, lungs free, lymph free
    - Stage I diagnosis
    - surveillance
    - mid feb '06, beta hcg slightly elevated = 4.6...small enlarged lower node seen on CT scan...
    - 3BEP began feb 20, 2006
    - finished 3 BEP, last bleo, april 17, 2006
    - CT scan, blood markers, chest..all clear
    - back on surveillance

  • #2
    How great of you to post this. Dianne
    Spouse: I/O 8/80; embryonal, seminoma, teratoma; RPLND 9/80 - no reoccurrence - HRT 8/80; bladder cancer 11/97; reoccurrence: 4X
    Son: I/O 11/04; embryonal, teratoma; VI; 3XBEP; relapse 5/08; RPLND 6/18/08 - path: mature teratoma

    Comment


    • #3
      From someone who's just about to start chemo, this was great reading. Thanks for taking the time to type it all out.

      Dave
      TC diagnosed 4/3/06, AFP@3300; Left I/O 4/10/06; Stage IIa Non-Seminoma, 100% Yolk Sac; Started 4xEP 5/22/06 with AFP@135; Finshed 4xEP 8/11, AFP normal, CT scans clear! Now on surveillance

      Comment


      • #4
        forgot something:

        after the first week in the hospital my lips / face were always dry..I tried all sorts of lip balm face cream etc...seemed the second it went on, my skin would go dry...most noticeable after the first round, and till I came across the products below...

        I used 2 products that worked:

        for the lips: Weleda Lip Balm

        for the face: Weleda skin food

        I think my wife got them also at whole foods...but these were the only things that seemed to work.
        - lump first noticed 11/20/2005
        - I/O right Dec 8, 2005
        - 95% embryonal / 5% seminoma
        - normal markers PRE surgery
        - no vascular invasion, tunica free of cancer, epididymis free of cancer, lungs free, lymph free
        - Stage I diagnosis
        - surveillance
        - mid feb '06, beta hcg slightly elevated = 4.6...small enlarged lower node seen on CT scan...
        - 3BEP began feb 20, 2006
        - finished 3 BEP, last bleo, april 17, 2006
        - CT scan, blood markers, chest..all clear
        - back on surveillance

        Comment


        • #5
          Petep

          Thank you very much.....I will be printing this out and taking it in with me on Monday!

          Regards,
          Wai

          Comment


          • #6
            Also....rinse mouth with prescription "Mary's Magic Mouthwash" to keep mouthsores in check and I had serious indigestion after the first week of chemo that was controlled very well with Prilosec OTC.
            Brian, [email protected]
            left inguinal orchiectomy 9/21/2005 > seminoma, stage IIC 12cm x 12cm retroperitoneal mass> 3XBEP completed 11/30/2005 > residual 9cm x 7cm mass removed 3/29/06. All necrotic tissue found > Surveillance

            Comment


            • #7
              If you don't want to put any other chemicals in your body on top of the chemo and anti-biotics you can try sipping 2 tablespoons of applecider vinegar for heartburn/integestion... It usually takes it away within 10 minutes and keeps it away for 2-5 days-- A tablespon of sugar worked real well for the hiccups too..... I thought the nurse was crazy when she made these suggestions but they worked like a charm -every time... If you have kids letting them shave your head is a great idea as Pete suggested. I did this with my kids which made them feel a little more in touch(and less scared) about what was going on...

              Good luck to those of you waiting to start chemo... Before you know it you'll be finished with chemo and cured!!!!

              Great information in this link Pete--Thanks for taking the time to write it--It will help many in the future!!
              Moffitt Cancer Institute
              CANCER SUCKS
              Diagnosed/Left I/O 9/18/2004--Non-Seminoma/Stage IIIC--3X B.E.P chemo--3X T.I.P. Salvage chemo---Abdominal Tumor@ 34cmX 24.5cmX 17.5cm---4/19/2005 --RPLND/Left Kidney,8 1/2lb Abdominal tumor,42 nodes removed---7/16/2005 Remission/Surveillance---Severe Peripheral Neuropathy--

              Comment


              • #8
                also, a friend forwarded me some info re: barley candy...I did not have any but his mom is a cancer patient and other cancer patients have suggested that the citrus flavored candy is very soothing for dry mouth and especially the metallic taste that you often get



                I did a search on barkey candy and there seem to be many sites out there but this is the site he sent me.
                - lump first noticed 11/20/2005
                - I/O right Dec 8, 2005
                - 95% embryonal / 5% seminoma
                - normal markers PRE surgery
                - no vascular invasion, tunica free of cancer, epididymis free of cancer, lungs free, lymph free
                - Stage I diagnosis
                - surveillance
                - mid feb '06, beta hcg slightly elevated = 4.6...small enlarged lower node seen on CT scan...
                - 3BEP began feb 20, 2006
                - finished 3 BEP, last bleo, april 17, 2006
                - CT scan, blood markers, chest..all clear
                - back on surveillance

                Comment


                • #9
                  Originally posted by Don
                  If you don't want to put any other chemicals in your body on top of the chemo and anti-biotics you can try sipping 2 tablespoons of applecider vinegar for heartburn/integestion... It usually takes it away within 10 minutes and keeps it away for 2-5 days-- A tablespon of sugar worked real well for the hiccups too..... I thought the nurse was crazy when she made these suggestions but they worked like a charm -every time... If you have kids letting them shave your head is a great idea as Pete suggested. I did this with my kids which made them feel a little more in touch(and less scared) about what was going on...

                  Good luck to those of you waiting to start chemo... Before you know it you'll be finished with chemo and cured!!!!

                  Great information in this link Pete--Thanks for taking the time to write it--It will help many in the future!!
                  Good point and Chewing Ginger chewing gum will help and also fight off nausea. )
                  Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
                  Current DVT
                  Current testosterone replacement therapy, Testim.

                  "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

                  Comment


                  • #10
                    Hi there I am sitting here close to midnight trying to read up on as much as I can as we head into my husband starting chemo in the next few weeks. It is very scary thing not knowing what he is in for but this sure has helped alot. Thnak you so much Traceyxxx

                    Comment


                    • #11
                      Thanks for this posting Im at the start of cycle 3 of BEP for stage 3A And have some of those side affects. Im looking for anything that could help.
                      Stage 3A
                      Spread to nodes and lungs
                      Non Sem. Germ Cell
                      Right Orchiectomy
                      4 BEP. Bleo cancelled for cycle 4 because of lung damage.

                      Completed 3BEP +1EP July 11 08
                      Markers did not normalize went to HCG= 23 Normal is below 4
                      2 cycles inpatient VeIP second line salvage chemo started 7/30/08
                      CT scan 08/26/08 Show a good response to the VeIP!!
                      HD finished on /09.

                      HCG 3

                      Comment


                      • #12
                        Thank you

                        Thank you so much for sharing this information - I hope you're doing well.

                        Comment


                        • #13
                          I have to begin with the chemo soon, and I want to thank you for this complete information and overview, it helps me preparing myself.

                          Do you still have any side effects that are lasting from the chemo?

                          Kind Regards

                          Eizo


                          24/12/12 Day of Christmas Eve: Testicle cancer
                          26/12/12 HCG 28
                          31/12/12 Day of Newsyear eve: Spread to lymph nodes and right lung
                          08/01/13 Right orchiectomy
                          11/01/13 HCG 8
                          18/01/13 HCG <2
                          22/01/13 PET scan
                          25/01/13 HCG <2
                          25/01/13 No active nodules on PET
                          28/01/13 Appointment with oncologist: Carboplatin? 3xBEP? Radiotherapy?

                          Comment


                          • #14
                            Hi -

                            sorry so long - just checking in....

                            no, no effects that I can really speak to....its 2013 now, and I finished my chemo in 2006, and surveillance in 2012

                            plus, closing in on 50 years old, so sometimes I'd like to blame the fact that I can't run or swim like on used on it...but...
                            - lump first noticed 11/20/2005
                            - I/O right Dec 8, 2005
                            - 95% embryonal / 5% seminoma
                            - normal markers PRE surgery
                            - no vascular invasion, tunica free of cancer, epididymis free of cancer, lungs free, lymph free
                            - Stage I diagnosis
                            - surveillance
                            - mid feb '06, beta hcg slightly elevated = 4.6...small enlarged lower node seen on CT scan...
                            - 3BEP began feb 20, 2006
                            - finished 3 BEP, last bleo, april 17, 2006
                            - CT scan, blood markers, chest..all clear
                            - back on surveillance

                            Comment


                            • #15
                              Hi my friend,

                              Thank you for these precious advices I have started today my second round of BEP and was searching for some tips like these... Thank you from the bottom of the heart !!!

                              Frank

                              Comment

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