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Starting EP x 4 Monday 7/10/17

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  • Starting EP x 4 Monday 7/10/17

    Hello. I am new to this forum and was hoping to learn a bit about what I am about to go through. I know that the results will not be exactly the same as others. They could be better or worse. Maybe I am looking for a little peace of mind more than anything. In February of 2016 I went to my Urologist to have a lump on my left testicle checked out. It turned out to be nothing more than trauma from my vasectomy in April of 2013. My Urologist decided to ultrasound the right testicle to compare and to have on record in case something else like this popped up on that side. As soon as the tech placed the ultrasound on she said to the Dr. "you need to look at this". It turned out that the right one had a mass inside of it that took up 50%. I had the right one removed on 2/16/16. The path report came back with stage pT1 Nx, which equates to pT1 = Primary Tumor Stage 1(since it was confined to the testis) Nx = regional nodes cannot be assessed. The Urologist recommended radiation treatment. The radiologists recommended seeing a medical oncologist given the low stage of the tumor. I went to MSKCC who told me that active surveillance was recommended since it was confined and no need to pump my body full of radiation or chemo. Fast forward to 6/27/17 a CT scan showed that the right para-aortic nodes at the renal vein have grown to 1.6 x 1.4 from 0.6 x 0.3. I was offered the chemo treatment option of EP x 4.

    I am starting this coming Monday 7/10 and was looking to see what others had experienced with this treatment? I am more scared right now of the side effects do the combinations of the chemo, anti nausea meds, acid reflux meds, steroids, anxiety meds more than the cancer itself right now. Sorry this is so long winded and thank you for reading and I look forward to your responses.

    ​Joe

  • #2
    I had 3xBEP not 4xEP, but from my experience the only drug to negatively affect me during chemo were the steroids. Those made me very anxious and restless. The negative of the anti nausea is it can cause constipation so stool softeners may be helpful for you on that front. Those were the only two issues I had with the medications.

    Chemo was different. It wasn't fun but it was manageable. People have said each cycle is worse than the last, but that wasn't the case with me. Cycle 1 knocked me down the most. The next two weren't fun but I felt they were a little smoother than the first. Luckily your Lymph are under 2 cm. You caught this early! In a couple months this will just seem like a bad dream and you'll be back to normal. It will go by faster than you expect!
    3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 11/16/17 All Clear! AFP continues to drop!

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    • #3
      Thank you. The unknown is the most I worry about. My Dr. told me to have a game plan for the possible side effects and to not worry about it too much. Most cannot be controlled without medication anyway. Sorry I thought I had both sizes in my original post. There is another enlarged inferiorly located at hte the right para-aortic node inseparable from the inferior vena cava just above an accessory lower pole renal artery and vein that is 2.5 x 2.4 cm.

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      • #4
        Hi Joe, I understand your apprehension surrounding chemo as I had 4xEP in the beginning of July 2016. I found the first round pretty easy once I got used to the fact that it was really happening.......and it was happening to me! I took the anti nausea meds as indicated and didn't have an issue with nausea. I did have some sleeping issues by round 3 and was prescribed some mild sleeping aid. I had to take Neupogen for three rounds too. None of this is very pleasant but I kept focused on the end result and that helped me put up with what I was going through. A lot of fatigue during the last couple of rounds and for a month afterwards. Now looking back it was as if I had a bad cold that lasted for four months!

        Since radiation was suggested I'm assuming you have seminoma. I believe chemo should clear it up pretty cleanly if that's the case. I would tell you to relax but you won't be able to do that until a couple of days after chemo starts. Then you'll realize it's not nearly as bad in real life as it was in your imagination. Good luck with it. Eric.

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        • #5
          Had a different story, same outcome.
          Where are your blood markers? I mean lymphnode can swell up due to infection or battleing, the nodes might not even contain cancer cells. I think you should post up your Tumor markers.

          Chemo sucks, I made a documentary of my journey.
          Editing is a bit rough, but I am here living, traveling the world ever since. (From bodybuilder to cancer and back) you should find it.

          I had BEP x 3 wich wrecked my fingers and my vision. I can live with it, but yes chemo is tough!

          My best advice is to go strong on plants while getting chemo. Nothing beats beet root, carrots and alike on vitamins. Not to compare it with a synthetic compressed pill that sits in a bottle for years

          I've made great recover! And so can you
          Life continues

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          • #6
            Thanks for posting. I am glad to hear that you are doing well.

            Yes it was a seminona. You are right in that relaxing will be easier as soon as I get this started. My oncologist says that this is the "landing zone" meaning that this is the expected location that the cancer will show up next. I have had 5 previous CT Scans which all showed no lymph nodes at all, which i understand means that they are not an issue.

            My blood results are as follows:

            AFP - Between 2.2 and 2.7. Drawn every 3 - 4 weeks since March of 2016.
            Beta HCG - Less than 2.0 Drawn every 3 - 4 weeks since March of 2016.
            LD - Between 150 and 167. Drawn every 3 - 4 weeks since March of 2016.

            I was never much of a vegetable eater. I have been living a low carb lifestyle since 2015.

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            • #7
              I'll stand with what I said 2.5 isn't too big I've seen plenty bigger on this forum that turned out perfectly fine! I just finished chemo this week and honestly 2 months ago today seemed a million years away, it went faster than I expected! I currently am not having many major side effects. Are you getting a port or picc line put in? If so watch out for blood clots. My picc got clotted and I've been on thinners for it. Only symptom was pain so just heads up if you feel pain in your port or picc line mention it! Thinners are annoying but not as bad as it could be!
              3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 11/16/17 All Clear! AFP continues to drop!

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              • #8
                Congrats on completing your run of chemo dcalandrelli. I think once this gets going it will be less stressful. Fingers crossed. No port or picc line. IV will be the way we start at least.
                Last edited by Jkratz; 07-08-17, 08:38 AM.

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                • #9
                  Hi Joe,

                  I can't offer advice yet but I can offer empathy.

                  I am starting 3xBep on Monday as well at NYU. I wish you all the luck in the world .

                  We can do this!

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                  • #10
                    Hi Jacob,

                    Thank you and best of luck to you as well. We will do this!

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                    • #11
                      Best of luck, man!! The side effects aren't too bad, you'll get through it! Just prepare your favourite movies, shows, books to take your mind off things and ask your family and friends to be there for youif you can. Take care!!

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                      • #12
                        Hoping the chemo takes care of the enarged nodes. Wishing the best, "chemo sucks" according to my son, but take each day at a time. Stay hydrated, try to walk daily.
                        17 year old son Grant dx 12/21/16
                        pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                        pre/o CT Scan 12/22/16 normal
                        r/o 12/22/16
                        Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                        PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                        -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                        2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                        BEP x 3 1/27/17
                        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.

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                        • #13
                          Thank you JoeT.A. and Trekga. I will do that. Should I expect to lose my hair? Thinking about shaving it tonight before I start and while I have to energy and to get the awkwardness out of the way as well.
                          Last edited by Jkratz; 07-09-17, 12:49 PM.

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                          • #14
                            Might as well wait to shave, it won't start falling out until week 3 as a rule, you'll have several months to rock the bald look, no need to rush it.

                            Now, everyone is different, I had no trouble with eating, constipation, anxiety, or sleeping (I had trouble staying awake, actually). The IV anti-nausea meds kept me just fine on the long weeks, only got a twinge on the weekends after the long week & the pills took care of that , I took them at the first bit of queasiness, & never actually got sick.

                            I didn't measure it, but I drank close to a gallon of water every day of the long week, starting on my 35 min drive to the infusion center.I needed to pee on arrival & after every bag was emptied.This really helps your kidneys flush out the poison.

                            In any event, don't be afraid. Know that you will be feeling poorly for the next few months, that is pretty universal, but you will be cured & have the rest of your life to live as the result. Many of us have been where your are now & the vast majority are still here dealing with the other problems life throws our way, there is no doubt you will join us.

                            Dave

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

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                            • #15
                              Thank you Dave for the kind and positive words.

                              1st treatment down. Have a little headache which I am told is from the steroids.

                              I think I am going to shave my head tonight. I am going to control this by cutting it off before the chemo controls it by killing the cells. I may even have my sons take turns carving something funny this way we can all get a laugh. ;-)

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