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3 x BEP as foreign inpatient?

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  • 3 x BEP as foreign inpatient?

    I would really appreciate some advice from experienced chemo-goers on the points below

    Living outside the US I may have to go for treatment in Hong Kong (which is covered)

    Hong Kong sees only 200 cases of TC a year and very few (if at all) westerners. It seems I would be the first. The nurses English is pretty OK.

    The other option is to go the Royal Marsden in London (highly experienced but v expensive)

    Some posters advised they thought 3 x BEP is standard protocol and should be OK given anywhere as long as anti-emetics etc where given.


    I visited the ONC for first time today and he wanted to admit me immediately (2 weeks post I/O) but here is what he said:

    1. He wants me as inpatient for first 5 days of each cycle. Is that normal?

    2. The ward has only 2 hours visiting a day and spotty wifi. Problem?

    3. The didn't seem to want to offer a port (though seem somewhat willing to do so) Would this be an issue not having access to for example forum during treatment?

    4. Meals are generic Chinese food (salty, fatty stuff). Would this be an issue as an inpatient?

    5 I am somewhat anxious that I will be stuck in there having terrible side effects and not be able to communicate. Or maybe most side effects happen on weeks off?

    I realise there are no hard and fast answers but any thoughts would be most appreciated.

    Spok

  • #2
    Spok,

    1) Typically, BEP can be do as outpatient. The first five days are longer (about 6 hours), but it seems to me there's no reason why you should sleep in a hospital.

    2) You're not forced to have a port. I'm ending BEP x 3 without. Some guys here didn't get it also without problem.

    3) Eat what you want if you find it good ! Chemo can affect taste of food, so salty can be good. However, if you have nausea, try to avoid fatty stuff. The most important will be to be well hydrated during your first 7-8 days of cycle.

    4) Everyone respond differently to chemo and you can have different reactions even between cycles. Nausea can be present the first week and delayed nausea can occur 5 - 7 days after your last dose of cisplatin. Expect your hair to fall in the end of 2nd-beginning of 3rd week. Your immune system will also be compromised in the same time and you can have mouth sores. Try to not focus on side effects, you may not have all of them.

    Continue to ask questions here if there's a problem, we're here to help you to get through this fight.

    All the best,

    Jean-Philippe
    December 15, 2015 : Right I/O. Markers normal.
    December 24, 2015 : Merry Christmas ! 100 % pure EC, no LVI.
    January 7, 2016 : CT scan : 2 RPLN of 8 and 9 mm
    February 2016 : Markers normal.
    March 2016 : Markers normal.
    April 2016 : Abnormal B-HCG (43). 14 mm (from 8) and 10 mm (from 9) lymph nodes.
    April 25, 2016 : Happy birthday ! Relapsed confirmed.
    May 2, 2016 : BEP x 3 begins.
    July 3, 2016 : BEP x 3 ends.
    July 2016 : Serum tumor markers normal. 10 mm (from 14) and 6 mm (from 10) lymph nodes. Back on surveillance !
    December 23, 2016 : Merry Christmas ! Serum tumor markers normal. 6.8 mm (from 10) and no more visible (from 6) lymph nodes. Surveillance continues.
    June 2017 : Serum tumor markers normal. 4 mm (from 7 mm) lymph node. Surveillance continues.

    Comment


    • #3
      Originally posted by spok View Post
      The other option is to go the Royal Marsden in London (highly experienced but v expensive)
      I don't fully understand the national health sysem over there, but can't you get treated at low cost somewhere else in your country?

      To answer your questions:
      1- It's more common to get 3xBEP as an outpatient, but in some countries, inpatient is the norm.

      2- I didn't have any visitors, nor did I wish for them. I didn't even bring a laptop or smartphone, so I don't see a problem.

      3- A port is far more comfortable than getting your vein punctured, also many who went without the port had problems with their veins towards the end of treatment. I'd advise getting one if possible.

      4- If you can get the food down, I don t see a problem

      5- The anti- nausea meds I was given by IV during my long weeks were very effective & I had no real side effects until the weekend after. Even those were mild & easily controlled by a few pills.My biggest side effect was fatigue so being able to drop off whenever I felt the need would have been a plus.Some guys are not as "lucky" as I was, though.

      You seem to be very anxious about getting chemo in Hong Kong. Perhaps you should look into less expensive options back at home?

      Dave
      Last edited by Davepet; 06-20-16, 02:31 PM.
      Jan, 1975: Right I/O, followed by RPLND
      Dec, 2009: Left I/O, followed by 3xBEP

      Comment


      • #4
        JP, thanks for the information. Great that you are going into your last round?
        Dave, thanks. I am not sure I will quality for national heath in UK as I have been out of the country too long and they changed the rules last year. The other issue is that I would have to set up accommodation. My only main concern about HK is lack of experience, for example will they get the dosages correct etc? I guess it's not rocket science, though

        Comment


        • #5
          Originally posted by spok View Post
          JP, thanks for the information. Great that you are going into your last round?
          Dave, thanks. I am not sure I will quality for national heath in UK as I have been out of the country too long and they changed the rules last year. The other issue is that I would have to set up accommodation. My only main concern about HK is lack of experience, for example will they get the dosages correct etc? I guess it's not rocket science, though
          I would always double check the dosages, even if you're in the US. You need to know your body surface area (BSA) and from there it's easy. Human error is always a possibility. I did one round of BEP. The first day of treatment, the nurse almost removed the Cisplatin when there was 25% still remaining! I quickly told her there was still quite a bit of medication left in the bag!
          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


          • #6
            RJKD thanks,
            1 Is there a formula or something I can use to calculate the dosage?
            2 So you mean the drugs come in drip bags, and the volume of liquid inside has been specifically designed for a patient? couldn't it be the case that bags are standard size and that they decide to administer only a portion of the bag depending on the surface area of patient?

            Comment


            • #7
              Originally posted by spok View Post
              RJKD thanks,
              1 Is there a formula or something I can use to calculate the dosage?
              2 So you mean the drugs come in drip bags, and the volume of liquid inside has been specifically designed for a patient? couldn't it be the case that bags are standard size and that they decide to administer only a portion of the bag depending on the surface area of patient?
              From the NCCN 2016 guidelines:

              Etoposide 100 mg/m^2 IV days 1-5
              Cisplatin 20 mg/m^2 IV on days 1-5
              Bleomycin 30 units IV weekly days 1, 8, and 15 or days 2, 9, 16
              repeat every 21 days.

              body surface area (m^2) calculator: http://halls.md/body-surface-area/bsa.htm

              They take a regular saline IV bag, and then inject the correct dose of medicine into the bag, label it with the dosage and your name, and mix it. You need all of the bag to get your prescribed dose.
              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!
              9/18/2017 all clears up to this date!

              Comment


              • #8
                Biwi, thank you very much. That is excellent information. Very much appreciated.
                I am also concerned about them being to anticipate sever reactions, such as stroke (a recent poster's husband suffered this on one of his early regimes)
                The research I have done tells me that vWF:Ag levels are correlated with risk and the article suggests that closer controls should be performed in patients (i.e. measuring this marker) I just wonder if anyone has heard of this marker or had it done?

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                • #9
                  Re the measures. So if I am 2.01m2, i would expect to take (100/2,01) = 49.7mg per dose and I should see that figure written on the bag?

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                  • #10
                    No, it would be 2.01 x 100 so 201mg. In other words, 100mg per meter squared.
                    Jan, 1975: Right I/O, followed by RPLND
                    Dec, 2009: Left I/O, followed by 3xBEP

                    Comment


                    • #11
                      I see. Thanks a lot, Dave

                      Comment


                      • #12
                        Can I ask: is it generally different nurses who administer the drugs each day, or the same ones?

                        Comment


                        • #13
                          I had one nurse throughout my treatment, except for a few odd days here & there. No idea what the protocol might be elsewhere. I was in a small infusion center in my onc's office.
                          Jan, 1975: Right I/O, followed by RPLND
                          Dec, 2009: Left I/O, followed by 3xBEP

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