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Advice needed urgently about chemo and setting

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  • Advice needed urgently about chemo and setting

    Hi to all and thanks for letting me join. So much inspiration from all of you. Here's my case

    Stage II non-sem Mainly EC spread to lymph nodes and one is 4cm. I want RPLND but guess it's not viable so will have to do Chemo. Here is question: I am living in Hong Kong, which has excellent health care BUT they don't see many TC cases and fewer in westerners. I am concerned that doing Chemo here might be compromised by language problems (i.e. explaining symptoms, checking what they are doing etc). Also will they just be following standard protocol and not adjusting things based on progress or lack of. All the doctors here say there is no problem at all with the language or skills involved in administering the chemo. I am not so sure.

    The other option is very expensive and disruptive. That is to go to the Royal Marsden to have the treatment. I will need accommodation and have to give up my life in HK for six months. The treatment must surely be better, but from your guys experience, how important is it to be able to communicate freely with the chemo nurses, and do you think it would be worth spening huge dollars ONLY To get the chemo in london. (not RPLND, for RPLND i would go straight to David nicol at RM).

    one more thing to add: from my research there have been no westerners undergoing Chemo for TC in HK (I guess they go back to their own countries as they employers would not want them on full pay doing nothing here). On the forum, I noticed one guy who was getting treated in Japan but not many posts from him. Another guy Swoody in Thailand wrote some fab posts about his treatment but then things got worse and I am sad to say that I think from his posts, he didn't make it.

    I am seeing an onc on Monday here to see what his take is though I am quite sure he will be gung ho about doing it here.

    Thoughts would be much appeciated

    Spok

  • #2
    3xBEP & 4xEP protocols are well documented so the chemo administration itself should be straightforward enough.Communicating about side effects might present difficulties if language is a barrier. Might be good to have a trusted translator available if it becomes needed. Other than that, probably little difference between chemo in London & Hong Kong.

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

    Comment


    • #3
      Like Dave said the dosages and whatnot for the chemo are standard. Make sure they give you the standard dose. The other part is the anti nausea and steroids, those are not directly part of the protocol but the correct ones make chemo significantly easier to handle.
      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


      • #4
        Thanks Dave and Biwi. So far I haven't been advised a regime (seeing an onc on Monday) but I assuming it will the BEP and EP ones.
        Biwi, to your point, that is "Exactly" what I am worried about. I could see them forgetting to do these kind of things and I really don't want to be in a situation where I have to micromanage the whole process in pigeon English while feeling like ****. Dave, yes, I could probably organise a translator for the 5 days I would be in, but again that might be awkward with this person hanging around for 6 hours.
        If it was surgery then there would be no doubt about London as the surgeon is highly experienced, but as you suggest, Chemo MAY be more standardised. Does anyone know what happened to Swoody? He has to micromanage his chemo in Bangkok Private hospital as the doctor would change doses on him without consent. Now, this may be a particularly Thai thing (they don't like being told by others what to do) but my worry here would be they would simply get it wrong or as Biwi says neglect to be proactive about nausea and other side effect drugs, plus they won't be able to offer their experience in the same one a nurse would do in their own language. I could be overthinking this, but Royal Marsden charge over 75K USD for chemo treatment alone plus there is accommodation costs. But then again, they are the leading Cancer centre in Europe and experienced in TC.

        Any more thoughts welcome

        Comment


        • #5
          With that staging and size of lymph node, you're definitely looking at 3xBEP or 4xEP. That's a good three months that you'll be a bit 'out of it'. If it were me, I'd want to be around friends / family, wherever that means. The number one priority should be your health - dropping work or other things in your life as necessary.

          Re: communications, I don't think there was that much I needed to say to my nurses, but it was crucial for me to be able to communicate clearly with my oncologist and get reassurance re: some of the side effects I had. If you have a good and accessible oncologist, then you should be fine on that front.

          - T
          30 Jul 14: Discovered lump
          31 Jul 14: GP referral to specialist
          4 Aug 14: Clinical diagnosis of tumour, blood samples taken, CT scans, USS (confirming ~2cm tumour)
          8 Aug 14: Left radical orchidectomy (plus test results back: CT normal, no mets; blood markers slightly elevated: AFP 14.16, HCG 4.9, LDH 149)
          29 Aug 14: Pathology results: Stage 1A Mixed Non-Seminomatous Germ Cell Tumour (composition: Yolk-sac Tumour and Mature Teratoma)

          24 Sep 14: Started precautionary adjuvant 1xBEP
          23 Oct 14: All clear; on surveillance

          Comment


          • #6
            Sorry, to correct my posts about, it wasn't Swoody (but he also disappeared) it was PeterC in Bangkok. His eloquent posts make frightening reading
            Here is the link

            http://www.tc-cancer.com/forum/forum...igh-dose-ti-ce

            Comment


            • #7
              Talis, thanks, that is good insight!

              Comment


              • #8
                You would only need to bring the translator in as-needed,like doc visits or if you don't feel your concerns are being understood. Most of those 6 hours are spent reading, watching TV etc,with little or no communication with anyone. Of course your translaor won't be able to pop in on a moment's notice, so there will be delays unfortunately.

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

                Comment


                • #9
                  Dave, thanks.
                  So what you are saying is that most of the serious communication needs present themselves outside of the actual infusion days. Taking a translator to an Onc would on the surface be an issue here or anywhere in Asia, as most doctors think they have English Nailed (even if they don't) but I could see that it would helpful when meeting the head nurse at the centre of something like that.
                  On another note, do you think there are any methods to prevent neuropathy caused by the Bleomycin? I am concerned that I will lose feeling in my feet and not be able to drive (a passion)

                  Comment


                  • #10
                    Pretty unlikely to have bad neuropathy after 3xBEP. Even with 4xEP I didn't get it bad enough to notice while driving a manual sports car. It is the cisplatin that causes the neuropathy btw.
                    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


                    • #11
                      thanks, Biwi. Good info.

                      Comment


                      • #12
                        Nothing I know of reduces chemo-induced nueropathy. Some seem to get it, some don't, but most that do, it's more annoyance than disability. There is a school of thought that slowing down delivery speed seems to help, but nothing I've read proves that. Since susceptibility to nueropathy seems to be so individual, they may never find out how to avoid it in all cases. The main thing is, if you need chemo to save your life, whatever minor problems that causes are just a price that has to paid for some of us. It can be easy to forget when so many of us survive TC these days, but without the treatments ( & the associated side effects) this board would have maybe a dozen active guys still alive & most of those waiting to die. Maybe some day they will find a treatment without side effects, but I doubt they will. I recently had some really nasty side effect from some first line blood pressure meds that make my nueropathy look like a walk in the park, so every medical treatment has potential side effects. Just have to decide if the results are worth the problems.

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

                        Comment


                        • #13
                          Spok,

                          There are no effective preventive strategies to avoid cisplatin induced neuropathy.

                          Neuropathy usually develops only after a cumulative dose of 300 mg/m2, so not so frequent with 3 x BEP. However, there is a marked individual variability.

                          For me, I only got mild paresthesia after 1 cycle, no relapse to now.

                          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


                          • #14
                            Thanks, JP!

                            Seeing an Onc for first time tomorrow. Do you (or anyone) have any good questions to ask to establish if this is a good onc or not?

                            Comment


                            • #15
                              Spok,

                              How was your meeting today ? What did your onc said ?

                              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

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