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  • Suggested non standard chemo questions

    Hi,

    Please help me with some suggestions as here in Croatia.. there are no support groups. Here is my case:

    It all happened fast. After diagnosis my markers were AFP 6,4. hCG 14,9, LDH 220. CTs clean. I had orchiectomy of my right testicle. It turned out to be 95%embryonal and 5% teratoma.
    My hCG was measured 2 more times and rose to 114.

    Is it usual that they sent me directly to chemo?

    I work as a steward in a airline company an I am also in a national parachuting team of croatia and thanks to your forum I suggested bleomycin toxicity to my onkologist and the need to receive oxygen from the bottle.

    He is sending me to 4xPEI chemo tommorow which is CISPLATIN, ETOPOSIDE and IFOSAMIDE.

    Now. Is there anyone who had the same case? Can I expect to be able to work in an airplane after this treatment? Is it overkill for early stage cancer? Will my blood and kidneys survive this so I pass my medical exam for my profession..???

    How late in to chemo can I expect some side effects?

    Please, any help is appreciated, thanks in advance

  • #2
    Neb:
    You will feel the side effects of chemo very soon. hair loss, upset stomach, tiredness. The real problem is what will the chemo do long term. Fromeverything I have been told the body can recover from chemo in 12-24 months, that is the amount of time for the organs to recover. You will most likely feel great in 3-4 months afrter the treatments are done. I don't think it should effect your aboilty to do your job. As for your athletic performance that may suffer some in the short term but with a steady cardio routine you should be back to your old self in a few short months.
    Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

    Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

    Comment


    • #3
      Hi Neb,

      The attached US FAA article may or may not be of interest.



      The article is towards the bottom of the text and is titled "Testicular Tumour in an Aviator."

      It deals with the implications of the diagnosis on insurance and certifcation for a pilot.

      Good luck with the treatment......Davie
      Diagnosed March 2006, Stage IIB, 3cm RP mass
      10% Seminoma, 90% Non-Seminoma (Embryonal, and a tiny amount of choriocarcinoma and teratoma)
      Prechemo bHCG-2648, AFP-582
      3xBEP March-June, markers normalised
      3 months postchemo - 1.2cm residual RP mass
      RPLND September 2006 - mostly necrotic tissue plus tiny amount of well differentiated teratoma
      June 2009 - TRT commenced to help out my lefty
      May 2011 - check-up, all clear

      Comment


      • #4
        We have two members that are pilots and I don't remember either one of them being restricted from flying. You may want to look through older post from Vinny and bchjetdrvr.
        Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

        Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

        Comment


        • #5
          Hi Neb.

          Normally 4xEP would be the treatment of choice for a condition like yours.
          Ifosfamide should not hurt your lungs and may increase the cure rate a little, but I think it's a little on the aggressive side. 4xEP should do the job.

          There seems to be different opinions on presurized air/oxygen and bleomycin, but since you are not having it, you should be fine in the air.

          Chemo is a very mental thing. From your sport you know how to push your self. You can deal with the chemo trhe same way. Know that it's something you need and it's very effective. Sideeffects are a sign that there is also a real effect. And it's really not so bad... Remember to drink water like it is beer (tons) on the days you get cisplatin.

          Blue skies
          Jens
          Embryonal carcinoma, stage II,
          3 x BEP, apr - june 2005
          Surveillance

          Comment


          • #6
            Originally posted by Neb
            My hCG was measured 2 more times and rose to 114.
            Is it usual that they sent me directly to chemo?
            Yes!
            The only solution in this case is chemo.

            Best wishes
            Jens
            Embryonal carcinoma, stage II,
            3 x BEP, apr - june 2005
            Surveillance

            Comment


            • #7
              Hi Neb,

              I had ifosfamide with two of my chemo rounds, and I dont remember it being any harder on my body during the treatment than the Bleo was.

              One thing to watch is that your treatment will need to be inpatient, as they need to give you a constant supply of a drug called 'mesna' after the daily ifosfamide to help prevent damage to your bladder. You will end up plugged onto a drip for 4 days and 20 hours from the end of the first ifosfamide infusion - no break! This isnt much fun, but you get used to it after a while. The other really annoying thing was having to measure the pH level of my urine every time I went to the toilet, but thats also something you get used to aswell!

              Like Jens Im wondering why youre not being given 4 EP, but I wouldnt be too concerned. I think your regime is very similar to the one Lance Armstrong had, so youre in good company. From what I remember he started with 1 BEP, then had 3 VIP. Im pretty sure that in his case the V was for 'VP-16', another name for 'etoposide', so your PEI sounds like the same. The thing that might be different I guess is the size of the doses - anyone have any ideas?

              Good Luck,

              Steve
              Left I/O March 05, nonseminoma;
              Relapse July 05, single lymph node 3cm;
              2 x BEP Aug / Sept 05, node grown to 4.7cm;
              2 x VeIP Sept / Oct, node grown to 6.7cm, markers normalised;
              RPLND Dec 05, no active cancer;
              back on surveillance

              Comment


              • #8
                Neb,

                It sounds like your chemo, while a bit nonstandard from a US perspective, will not have bleo, which is good news for your lungs, although I had 4xBEP and haven't had any ill effects thusfar.

                As far as flying goes, I suppose it all depends on the rules your employer and your national aeronautics board have. In the US, flight attendants aren't required to get FAA medical certificates. But even as a pilot, I haven't had a hard time - the FAA gave me a special issuance medical and I have to give them regular updates (just once a year now) of my surveillance, blood test and CT results, etc.

                Still, I don't fly big iron - just small 4-place aircraft. The article Davie posted dealt with a pilot with a second-class certificate (probably a professional pilot) and stated that pilots have to wait up to 3 years for a special issuance in cases of metastatic cancer (I applied right after my RPLND and didn't have to wait).

                I would suspect as long as you can pass whatever physical examination your airline requires, you should be good to return to work after treatment. Good luck!
                Vinny (aka Frank)
                http://vinnysgotcancer.blogspot.com

                left I/O 1/5/05; 95%EC / 5% mature teratoma; stage IIIC
                4x BEP 1/24/05 - 4/11/05; RPLND (left side) 5/31/05
                VATS resection of teratoma from left lung 4/26/06
                Presently surveilling

                Comment


                • #9
                  Pozdrav Neb,

                  Ja sam siguran da ti momci sa ovog sajta znaju reči kako dalje sa kemoterapijom.Ovde ima svakih i tako i sa jednakom prognozom kao ti. Bitno je sada, da pričitaš sve što treba i da se odmoriš nakon svake kemoterapije, tako da trebaš za sada da zaboraviš posao i sve ostalo. Tvoje zdravlje je najbitnije sada.

                  Želim ti puno sreče,

                  Alex
                  Seminoma I. stage ,May 2004,Si Deus pro nobis quis contra nos

                  Comment


                  • #10
                    Originally posted by Krokar
                    Ja sam siguran da ti momci sa ovog sajta znaju reči kako dalje sa kemoterapijom.Ovde ima svakih i tako i sa jednakom prognozom kao ti. Bitno je sada, da pričitaš sve što treba i da se odmoriš nakon svake kemoterapije, tako da trebaš za sada da zaboraviš posao i sve ostalo. Tvoje zdravlje je najbitnije sada.

                    Želim ti puno sreče,
                    I couldn't have said it better!

                    Jens
                    Embryonal carcinoma, stage II,
                    3 x BEP, apr - june 2005
                    Surveillance

                    Comment


                    • #11
                      Originally posted by Jens
                      I couldn't have said it better!
                      Wow, I couldn't have said it at all!
                      Scott
                      right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since

                      Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

                      Comment


                      • #12
                        I AM SPEECHLESS!!!!!!!
                        I got home from the almost constant hook up to the needle after 2 days of chemo and have to go back tomorow. BUT I CAN NOT EXPRESS HOW HAPPY I WAS TO FIND SO MANY OF YOUR SUPPORTIVE REPLIES.

                        THANK YOU ALL.

                        I am feeling ok after these 2 days, but it is a bit boring. I am getting NAVOBAN before my CISPLATIN bottle (that is against nausea) and I am getting 3 x a shot of UROMITEXAN (sort of uro-protector).
                        to NZSTEVE... is this something like "mesna"? do you know the generic name? I just want to make sure I minimze the side effects.

                        So basically the risks of developing some permanent organ damage (like kidneys or liver) is low?
                        SHould I avoid salty foods (Na?)

                        Alex is from Slovenia which neighbours Croatia and we speak simmilar language.

                        Hvala Alex na podrsci

                        Going back tommorow morning..
                        Thanks again for all the information, You can not imagine how your replies help me to get suppport information and to feel better!!!!

                        Comment


                        • #13
                          Neb:
                          Congratulations on getting the treatments started. Just make sure you keep drinking water to flush that poison out.
                          Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                          Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

                          Comment


                          • #14
                            Originally posted by Neb


                            ... I am getting NAVOBAN before my CISPLATIN bottle (that is against nausea) and I am getting 3 x a shot of UROMITEXAN (sort of uro-protector).
                            to NZSTEVE... is this something like "mesna"? do you know the generic name? I just want to make sure I minimze the side effects.
                            Looks like uromitexan is the brand name, so its the same thing - check out this http://www.netdoctor.co.uk/medicines/100002694.html. Mine was drip fed over 20 hours after the ifosfamide shot, but there could well be different delivery protocals / dose schedules. Sounds like they are onto it anyway.

                            I had the Navoban aswell (actual drug name is tropisetron). Really good stuff, I wasnt sick at all while I was taking it.

                            Steve
                            Left I/O March 05, nonseminoma;
                            Relapse July 05, single lymph node 3cm;
                            2 x BEP Aug / Sept 05, node grown to 4.7cm;
                            2 x VeIP Sept / Oct, node grown to 6.7cm, markers normalised;
                            RPLND Dec 05, no active cancer;
                            back on surveillance

                            Comment


                            • #15
                              Hi

                              It is me one week after my first PEI cycle. I feel ok. I felt bad first 2 days after chemo and now it is getting better and better. I never vomited. I only have cold hands and sort of less sensitivity in fingers. I do sports and almost as nothing happened.
                              I have a couple of questions to anyone who knows and is willing to share the knowledge

                              Should I have special diet, or avoid some foods to preserve kidneys. How often are kidney complications and are they permanent? I am scared that I will cure cancer and be left with kidney failure....

                              If I live healthy and recover fast, doesn't that mean that my "cancer" will have faster recovery too??


                              Thanks in advance.

                              Comment

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