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Starting EP x 4 Monday 7/10/17

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  • Jkratz
    started a topic Starting EP x 4 Monday 7/10/17

    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

  • Trekga
    replied
    Great news! So sorry for your rough journey.

    Leave a comment:


  • Jkratz
    replied
    Back to active surveillance. No surgery needed. Such a relief. Thank you all again for the posts.

    Leave a comment:


  • Jkratz
    replied
    Sorry I have not been posting since my chemo ended. It has been a struggle mentally waiting for scan results. My first week off I have regular checkups and also receive hydration. While at Sloan's Kimmell location I passed out and hit my head as a result on the floor. My oxygen was at 85 and they could not get it any higher without 3 liters of oxygen. Right away Dr. Funt thought I had Pulmonary Embolism in my lungs. Turns out he was correct. I have small clots in my lower branches which turns out to be common especially with having 4xEP and TIP totaling 40 treatments in just 51 weeks. I m a on Xarelto now and am doing well.

    They decided to do the CT scan at the same time to limit the amount of contrast by doing another scan after the two weeks off. There were 2 nodes that popped back up on my scan from April. The one had completely resolved and the other shrunk from 1.6 x 1.2 to 1.5 x 1.2. Dr. Funt wants me to see Dr. Sheinfeld to discuss the possibility of having an RPLND surgery.

    I had another scan on the the 24th of September and the node that was previously 1.5 x 1.2 is now 1.0 x 0.7. I see Dr. Sheinfeld this Thursday the 4th. Dr.Funt doesn't think the RPLND will be necessary but he also told me that of course Dr. Sheinfeld will weigh in on what he feels is best for me. I am happy that the chem seems to have worked. I will update after my visit on Thursday.

    Thank you to everyone for your posts, all of the positive words and knowing what to expect from others makes it easier.

    Leave a comment:


  • Jkratz
    replied
    No worries Pwsuba. I hope you have a good turnout with your relapse.

    Thank you dustumor. Luckily I have not had any issues with nausea during EP and TIP. I hope it gets better for you and you have a good prognosis.

    Leave a comment:


  • Pwsuba
    replied
    Jkratz, hopefully you’ll have a good outcome now. Sorry if I added any stress. Right now I’m stressed / anxiety laden I know how easy small things can just make the mind run wild.

    But from what I’ve read early relapse still has good/great prognosis.

    Leave a comment:


  • dustumor99
    replied
    Best of luck to you! I am about to start my 3rd round of 4xEP. First two were inpatient, and I can honestly say being in the hospital contributes as much to my nausea as the chemo itself. I can't even think about a hospital food tray without feeling slightly sick. I think that's a result of my first round being so rough (I had a really large retroperitoneal tumor that was causing tons of nausea before I even started chemo, so I started round 1 with a pretty bad nausea deficit).

    I had to read through this thread to see how you handled 4xEP, sounds like it wasn't too bad. Since round 2 was so much better than round 1, I'm hoping I don't see too much of a decline (nausea, chemo brain, etc.) with round 3.

    Leave a comment:


  • Jkratz
    replied
    I am sorry to hear about your relapse.

    Yes, my relapse was only 7 months from completing EP last summer.

    I am not sure, we have never spoken about the tumor being platinum refractory. My scans were clean in September of 17 and January of 18. The nodes popped back up on he April 18 scan. It looks like the relapse has to fall within the first two months after cisplatin to be considered refractory. Hopefully I am not because it doesn't sound like a very good prognosis if they are.

    Leave a comment:


  • Pwsuba
    replied
    I’ve just read over this thread. I’m sorry for the conditions and turns your cancer took.

    I’m at MD Anderson about to go through HDC w/ SCT I’ll have 2 rounds of two different chemo cocktails. I’ve also already had 2 TiP rounds.

    In your case you were early relapse ?
    Was your tumor ever considered platinum refractory?

    I’m late relapse (7.6 years clean) and refractory germ cell tumor.

    Leave a comment:


  • Jkratz
    replied
    Thank you Skywalker. I hope your husbands scan is clean and continues to be so.

    Leave a comment:


  • Skywalker
    replied
    I was wondering how things turned out for you. It's amazing that you are doing that well on TIP. TIP ended up being much harder on my husband than HDC and SCT. Prayers for a clean scan for you and an end to all of this. My husband's 6 week post treatment scan is tomorrow with the doctor's appointment and the results Friday. We are super nervous. RPLND and liver resection have been discussed for his case depending on residual masses, etc. and he is 100% seminoma as well. We haven't gotten any deeper into that process though.

    Leave a comment:


  • Jkratz
    replied
    Update: I was randomized to the standard side and am receiving TIP. I have started my 4th and final round today. I have a CT scan scheduled for the end on this cycle. I am much more tired but cannot complain. I have not had any issues with nausea or vomiting. The fatigue has been lasting longer with each cycle which is had I had expected. I am hoping that this time will be the last time I have to go though this. I am keeping my fingers crossed that the nodes have shrunk, Dr. Funt has mentioned the possibility of having RPLND with Dr. Sheinfeld. I have looked into this and it seems like its quire invasive and has me nervous.

    Looking at my CT scan from May it seems like the nodes are very small. I wonder what they base the decision for surgery on or is it becoming a standard for curing seminoma germ cell tumor ?

    Precaval, abutting third segment of the duodenum, more lateral node = 1.0 x 0.9 cm, previously 1.5 x 1.5 cm

    Precaval, abutting third segment of the duodenum, more medial node = 1.2 x 1.3 cm, previously 1.0 x 0.9 cm

    Retrocaval, posterior to the right renal hilar vessels, more lateral = 1.6 x 1.4 cm, previously 1.0 x 0.8 cm

    Retrocaval, posterior to the right renal hilar vessels, more medial = 1.6 x 1.2 unchanged

    I know I don't share a lot or comment either but I read the posts and am constantly thinking about everyone going through this and wish the best for all.

    Thanks,
    ​Joe

    Leave a comment:


  • biwi
    replied
    Originally posted by Jkratz View Post
    Thank you the positive words MamAng. I am planning on working again this time as much as I can. I was able to work during the treatments and coach my sons baseball games and practices all summer and the early part of fall during the 4xEP last year, so I am hoping to be able to do at least the work part since I will be inpatient this time. I hope your son is doing well now.
    Those of us with computer/desk jobs that can be done remote definitely have an advantage. For my 4xEP I filed FMLA just in case, but ended up being able to work almost every day from the infusion center, home, or the office if I was feeling up to it. I only took about 5 or 6 days off total through the 4 rounds. And then breaking my leg 2 years later I have been able to work from home the last 3 weeks since I am not allowed to drive. It would be tough both the monetary and psychological toll both of these would take if I had a labor job that I had to stop doing and file unemployment or such for this amount of time.

    Leave a comment:


  • Jkratz
    replied
    Thank you the positive words MamAng. I am planning on working again this time as much as I can. I was able to work during the treatments and coach my sons baseball games and practices all summer and the early part of fall during the 4xEP last year, so I am hoping to be able to do at least the work part since I will be inpatient this time. I hope your son is doing well now.

    Leave a comment:


  • MamaAng
    replied
    Hi there. I'm sorry to hear that you've relapsed but you are definitely in good hands. Just wanted to chime in with chemo comment. My son had 2 rounds of each and his feeling was BEP is better tolerated because you're not confined to the hospital. He found the other was more difficult emotionally which affected how he felt physically. They are long weeks and you need to plan to keep yourself busy with whatever you can manage. TV binging, movies, reading, whatever works. Hang in there.....you GOT THIS!!! xoxoxo

    Leave a comment:

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