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  • #76
    Originally posted by Davepet View Post
    I'm starting to think that the very best thing that could happen would be for your onc to get upset & fire you as a patient. He doesn't know what he is doing & is totally ignoring the very well documented standard of care that has been established for decades now. He has already caused delay in your treatment with absolutely no justifiable reason. None of the tests he wants changes ANYTHING regarding your treatment you need 3xBEP & you need it last week. The best TC doc in the world says so. I would dump your doc & find someone that knows what needs to happen next.

    Dave
    Well Dave thats the thing, I dont think I would be able to find one oncologist who is truly TC expert in this country. Actually he didnt delay the treatment, what delayed the treatment one week was actually the urinary infection I got because of the nephrostomy in my right kidney.
    He is a good doc I think, but he likes many tests. If he gets upset then I will find another oncologist to continue my treatment. But I hope he doesnt, my treatment cannot be interrupted bacause I think it could be worse
    Its better to continue with this doc and not interrupt or delay treatment once started, thats how I see it
    39 year old diagnosed Right Mass as per U/S
    Pre/o CT-Scan Chest Xray all Clear march 24 2017
    Right I/O April 8th 2017
    Path report 100% Pure Seminoma Tumor Size 2.5cm x 1.3cm no invasion/surveillance decided
    Tumor Markers never elevated
    Chest Xray clear Ct-Scan January 28 2018 shows 18x14 mm aortocaval node.
    May 11 BHCG Mild elevated 3.1 Reference Value 2.7
    May 25 2018 Chest CT-Scan Clear
    May 31 2018 MRI showing aortocaval node is now 35mm, everything else clear

    Comment


    • #77
      Mauro, as I understand, your plan is to start with the BEP therapy that is ordered by nurse, and than showing in front the oncologist without the biopsy and PET CT results that were conditions he required for starting of the BEP therapy. He'll be furious for sure, I don't know much but I know that doctors don't like that patients diagnose and treat themselves. Are you sure that nurse will give you BEP treatment without PETCT and biopsy as this is against doctor's requests?
      45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
      Waiting...

      Comment


      • #78
        Originally posted by Harxxony View Post
        Mauro, as I understand, your plan is to start with the BEP therapy that is ordered by nurse, and than showing in front the oncologist without the biopsy and PET CT results that were conditions he required for starting of the BEP therapy. He'll be furious for sure, I don't know much but I know that doctors don't like that patients diagnose and treat themselves. Are you sure that nurse will give you BEP treatment without PETCT and biopsy as this is against doctor's requests?
        Well the chemo wasnt ordered by the nurse, she just gave the paperwork to me and explained. All chemo order and paperwork was written and signed by the oncologist and then his nurse calls and asks me to pick them up. The oncologist was outside the city all week attending some meetings, and it seems like he email the order to the nurse or something. So I didnt see the oncologist the day I was there to get chemo order. The nurse just gave me all the order paperwork with the oncologists signature and stamp, gave all details and indications about the treatment and said the Oncologist wants to see me after the first cycle is complete and asked me to be there on the 4th of October for an appointment with the Dr. And, she didnt say anything about the Biopsy or the PETCT, but you are right thats something the oncologist requiered before starting 3XBEP. However, the nurse didnt say a word about PETCT and Biopsy and I wasnt able to speak with the oncologist because he was gone the whole week.
        So Im actually concerned about it, but I have the pretext that I wasnt able to get the PETCT and Biopsy bacause of the urinary infection. But it still makes me feel concerned. Also the Cancer facility is expecting me there this monday 24th of September to start treatment
        Last edited by mauroeg7; 09-20-18, 02:19 PM.
        39 year old diagnosed Right Mass as per U/S
        Pre/o CT-Scan Chest Xray all Clear march 24 2017
        Right I/O April 8th 2017
        Path report 100% Pure Seminoma Tumor Size 2.5cm x 1.3cm no invasion/surveillance decided
        Tumor Markers never elevated
        Chest Xray clear Ct-Scan January 28 2018 shows 18x14 mm aortocaval node.
        May 11 BHCG Mild elevated 3.1 Reference Value 2.7
        May 25 2018 Chest CT-Scan Clear
        May 31 2018 MRI showing aortocaval node is now 35mm, everything else clear

        Comment


        • #79
          I would just show up & start treatment, the tests can be done later if at all. Getting chemo started is the most important thing here, sort out the rest later.
          Jan, 1975: Right I/O, followed by RPLND
          Dec, 2009: Left I/O, followed by 3xBEP

          Comment


          • #80
            Originally posted by Davepet View Post
            I would just show up & start treatment, the tests can be done later if at all. Getting chemo started is the most important thing here, sort out the rest later.

            Well I think you are right Dave and Im scheduled to start treatment tomorrow. However, Ive been feeling like there was some flu or cold in my body or if the urinary infection I got two weeks back was still there even when Im on antibiotics beacause of this. Some ramdom body aches and some throat discomfort which are typically gone if I take acetaminophen or ibuprofen. I will mention this to the nurse tomorrow and hope this will not delay treatment
            39 year old diagnosed Right Mass as per U/S
            Pre/o CT-Scan Chest Xray all Clear march 24 2017
            Right I/O April 8th 2017
            Path report 100% Pure Seminoma Tumor Size 2.5cm x 1.3cm no invasion/surveillance decided
            Tumor Markers never elevated
            Chest Xray clear Ct-Scan January 28 2018 shows 18x14 mm aortocaval node.
            May 11 BHCG Mild elevated 3.1 Reference Value 2.7
            May 25 2018 Chest CT-Scan Clear
            May 31 2018 MRI showing aortocaval node is now 35mm, everything else clear

            Comment


            • #81
              Today is the "D" day, hope everything went well and you started with the chemo. Good luck.
              45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
              Waiting...

              Comment


              • #82
                Originally posted by Harxxony View Post
                Today is the "D" day, hope everything went well and you started with the chemo. Good luck.
                Yes I started chemo already I got Etoposide and Cisplatin. Tomorrow I will get Bleomicine. I feel a bit dizzy and have some headache. Any tips from your experience will be much appreciated
                39 year old diagnosed Right Mass as per U/S
                Pre/o CT-Scan Chest Xray all Clear march 24 2017
                Right I/O April 8th 2017
                Path report 100% Pure Seminoma Tumor Size 2.5cm x 1.3cm no invasion/surveillance decided
                Tumor Markers never elevated
                Chest Xray clear Ct-Scan January 28 2018 shows 18x14 mm aortocaval node.
                May 11 BHCG Mild elevated 3.1 Reference Value 2.7
                May 25 2018 Chest CT-Scan Clear
                May 31 2018 MRI showing aortocaval node is now 35mm, everything else clear

                Comment


                • #83
                  Thank goodness- so sorry you had to advocate continually for the appropriate treatment for TC. Ugh!!!!! Just stay hydrated, take anti-nausea pills, eat what appeals to you. You do have support, right?
                  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.

                  Comment


                  • #84
                    Originally posted by Trekga View Post
                    Thank goodness- so sorry you had to advocate continually for the appropriate treatment for TC. Ugh!!!!! Just stay hydrated, take anti-nausea pills, eat what appeals to you. You do have support, right?
                    Yes Trekga, Im at the Oncology facility. I just finished bleomicin, and Im getting the Etiposide now and last will be the Cisplatin. As for nausea pills I was ordered
                    both Alizapride and Ondansetron, I have only taken Alizaprise every 8 hours and nurse recommende that if I get nausea start ondansetron pills which have been also IV admisnitered yesterday and today. What do you mean support.?
                    Last edited by mauroeg7; 09-25-18, 01:49 PM.
                    39 year old diagnosed Right Mass as per U/S
                    Pre/o CT-Scan Chest Xray all Clear march 24 2017
                    Right I/O April 8th 2017
                    Path report 100% Pure Seminoma Tumor Size 2.5cm x 1.3cm no invasion/surveillance decided
                    Tumor Markers never elevated
                    Chest Xray clear Ct-Scan January 28 2018 shows 18x14 mm aortocaval node.
                    May 11 BHCG Mild elevated 3.1 Reference Value 2.7
                    May 25 2018 Chest CT-Scan Clear
                    May 31 2018 MRI showing aortocaval node is now 35mm, everything else clear

                    Comment


                    • #85
                      They mean support as in helping you out thru chemo.
                      Jan 2012- U/S mass in Left testicle
                      Feb 2012- I/O performed to remove cancer
                      Mar 1,2012- pathology pure seminoma
                      Mar 7, 2012 PET SCAN stage IIa
                      April 2012 Mayo clinic carbolite.
                      May 2012 carbolite failed, started BEP x3
                      August 7th 2012- BEP complete
                      April 2013 CT/PET show relapse
                      May 2013 RPLND
                      Aug 2013 Relapse again Started VIeP x2
                      Oct 2013 HDC AUTOLOGOUS
                      Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
                      Feb 2014 confirmed false positive all clear FINALLY !
                      Jan 2015 1 year cancer free Pet/CT scan
                      Jan 2016 2 years cancer free "Pet/CT scan
                      Jan 2017 3 years cancer free "Pet/CT scan
                      Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

                      Comment


                      • #86
                        My advice is to get plenty of rest and minimise visitors or friends in the evenings during treatment when you are going to be most exhausted. It just wears you out anyway.. Are they giving you plenty of fluid through IV? Any steroids too?
                        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

                        Comment


                        • #87
                          Originally posted by JoeTheAstronaut View Post
                          My advice is to get plenty of rest and minimise visitors or friends in the evenings during treatment when you are going to be most exhausted. It just wears you out anyway.. Are they giving you plenty of fluid through IV? Any steroids too?
                          Joe, Ive been recieving chemo since yesterday BEP x 3, I had bleomicine today with the other two, and I wil have bleomecine again next tuesday and one week after. What they first do there when I show up is hydrate me with NSS IV 1000cc. Not sure about steroids but I can mention they are giving me: dexamethasone IV 24 Mg, ranitidine IV, ondansetron 24 Mg IV, diphenhydramine one pill per day. When Im on cisplatin IV they include mannitol IV and when cisplatin is finished they include furosemide IV. Everything was ordered this way by the oncologist..

                          I was ordered to get anti-nausea pills when I.m home: Ondansetron every 8 or 12 hours and Alizaprise every 8 hours. However, nurse recommended not taking any Ondansetron unless I actually get nauseas, she said, just stay with Alizaprise every 8 hours. And for the Bleomicine days I was ordered prednisone one 5 Mg pill after bleomicine but today.

                          I was also given only yesterday one fosaprepitant IV I think to treat nauseas too. I feel currently at day two of chemo my stomach a bit weird, and feel myself like heavier a bit tired not seepy though. They also are giving me this friday one pegfilgrastim IV also known as Neulasta to avoid low WBC I think
                          Last edited by mauroeg7; 09-25-18, 11:39 PM.
                          39 year old diagnosed Right Mass as per U/S
                          Pre/o CT-Scan Chest Xray all Clear march 24 2017
                          Right I/O April 8th 2017
                          Path report 100% Pure Seminoma Tumor Size 2.5cm x 1.3cm no invasion/surveillance decided
                          Tumor Markers never elevated
                          Chest Xray clear Ct-Scan January 28 2018 shows 18x14 mm aortocaval node.
                          May 11 BHCG Mild elevated 3.1 Reference Value 2.7
                          May 25 2018 Chest CT-Scan Clear
                          May 31 2018 MRI showing aortocaval node is now 35mm, everything else clear

                          Comment


                          • #88
                            Work and Chemo. Im on 1 cycle second week of BEP x 3. This is something Ive been wondering How is it handled.?. My oncologist said that on the long BEP week he will issue a medical excuse or disability order so I could get my treatment and then stay home and not go to work. However he didnt say anything about the other two weeks where there is only one-day Bleomicine. Is a good idea to go to work during treatment? .I think we TC patients on chemo should avoid that, but I think my oncologist might want to continue with my normal life and work during the short Bleo week. He hasnt told me that but it.s the feeling I have.
                            39 year old diagnosed Right Mass as per U/S
                            Pre/o CT-Scan Chest Xray all Clear march 24 2017
                            Right I/O April 8th 2017
                            Path report 100% Pure Seminoma Tumor Size 2.5cm x 1.3cm no invasion/surveillance decided
                            Tumor Markers never elevated
                            Chest Xray clear Ct-Scan January 28 2018 shows 18x14 mm aortocaval node.
                            May 11 BHCG Mild elevated 3.1 Reference Value 2.7
                            May 25 2018 Chest CT-Scan Clear
                            May 31 2018 MRI showing aortocaval node is now 35mm, everything else clear

                            Comment


                            • #89
                              This is an very interesting question, my son is on the way towards to chemo I think( his bhcg elevated for two weeks). How is your feeling so far? Seems everything runs well. Is it important to choose a good cancer center to implement chemo or not?

                              I wish you all the best during this hard time.

                              Amy , Ryan’s mumm

                              Comment


                              • #90
                                Originally posted by mauroeg7 View Post
                                Is a good idea to go to work during treatment? .I think we TC patients on chemo should avoid that, but I think my oncologist might want to continue with my normal life and work during the short Bleo week.
                                Well, there are very good reasons to avoid random people during chemo, the biggest being that chemo kicks the sh!t out of your immune system, & while they can inject drugs to lessen that effect, they do not eliminate it. The other is that chemo often kicks the sh!t out of the patient & it may not be possible to work. I know I could not have workedthe fatigue was just too much.It doesn't matter what you doc "wants" tell him you need the flexibility to work or not as you see fit, pretty sure most of us don't even try.

                                Dave

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

                                Comment

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