Announcement

Announcement Module
Collapse
No announcement yet.

Just looking for a little encouragement.

Page Title Module
Move Remove Collapse
X
Conversation Detail Module
Collapse
  • Filter
  • Time
  • Show
Clear All
new posts

  • Just looking for a little encouragement.

    Hello TC Peeps,

    Long time reader, first time poster.

    I've resisted participating in any kind of forum because I very much have a "go it alone" mentality. But, the last year has pushed me to a point where if I go it alone much longer, I simply won't.

    I might as well start at the beginning of this whole thing.

    My story is similar to many on here. I was diagnosed at age 19 (2003), and underwent the standard of care at that time. The disease was caught fairly early at stage II BS. I had my left one removed, and then underwent 4 cycles of cisplatin and etoposide. A small, now dead, mature teratoma was also found in the usual spot — lymph nodes accessible with the RPLND procedure. They were able to do nerve sparing and, being young, I bounced back from it fairly quickly.

    Then, 17 years passed.

    I grew up. Put this behind me, and moved on with my life.

    But I made a mistake. Once I reached 5 years out — I discontinued screenings. Granted, nobody said "Hey, just to make sure...come on back once in awhile and we'll do a quick blood test to make sure you're ok." Chalk it up to being young and anxious to never see the inside of a cancer clinic again. Words like "highly curable" and "2% recurrence rate" etc. also wormed themselves into my brain and...I let my guard down. I also have a visceral, vitriolic hatred for the U.S. medical system, and have always tried my hardest to stay out of it as much as possible.

    So, in July of 2019, when I began to feel a deep ache at night in my back, I waited. But the ache got worse and worse until finally I went into my GP's office.

    They did not run scans or suspect cancer, though they had the history. Instead, they prescribed something for nerve pain and told me if it didn't clear up in a few weeks...to come back.

    You know where this is going. It didn't clear up. It got worse.

    I ended up visiting an out of state ER on the night before a good friends' wedding where they found a huge retroperitoneal mass.

    This lead to us bailing on our trip and making emergency phone calls as soon as we got home.

    String of events:

    Nasty tumor discovered ---> sent to IU for RPLND re-op ---> lost ejaculatory nerves ---> recovery ---> AFP started to rise again ---> radiation treatment on pelvis and lumbar spine ---> AFP fell to 16 —> has begun rising again (46).

    I have been told this is incurable, but that remission is possible. I have imminent chemo on the horizon, and naturally am worried. I’m a little out of practice with the whole chemo thing and was curious if the community had:

    1. Any success in controlling disease with late relapse?
    2. Anything improved with Chemo and the supporting drugs to control side effects in the last 20 years?
    3. Any words of encouragement to help someone who is essentially standing on the very edge of despair and considers ending it all on the reg?

    We all have fights. Some of the things I’ve read on here amaze me what people have been through and managed to deal with. You are inspirations.

  • #2
    Sorry to hear about your journey!

    Who said it was incurable? Late relapse of nonseminoma is definitely problematic, but I don't think I'd blanket call it incurable. I have read somewhere between 25% and 65% end up disease free?
    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: begin 4xEP, end 9/18/15
    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!
    10/22/19: all clears up to this date!

    Comment


    • #3
      Biwi.Is this the first time something like this has happened on this forum?

      Comment


      • #4
        Originally posted by omerkulum View Post
        Biwi.Is this the first time something like this has happened on this forum?
        There have been quite a few folks on this forum, with most scenarios presented. I'm pretty sure a few of them have had late relapses. Have you done a quick search on here? I know pwsuba had one, although he has not posted recently :-(.
        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: begin 4xEP, end 9/18/15
        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!
        10/22/19: all clears up to this date!

        Comment


        • #5
          I am not sure, but maybe Hermana can help ypu

          Sending prayers and faith

          Comment


          • #6
            Originally posted by omerkulum View Post
            Biwi.Is this the first time something like this has happened on this forum?
            I've been on this forum for 10 years & don't think we have lost even a dozen guys in that time. I could be wrong, The mainline treatments & the backup treatments have gotten very close to eliminating death from TC. Some have a more difficult time of it than others but most of us come out the other side & live a normal life.
            Jan, 1975: Right I/O, followed by RPLND
            Dec, 2009: Left I/O, followed by 3xBEP

            Comment


            • #7
              Late relapses can be more difficult to treat but I am glad to hear that you went to IU and the surgical option was exercised first.

              Is IU still following you and making treeatment recommendations?

              Mike
              Oct. 2005 felt lump but waited over 7 months.
              06.15.06 "You have Cancer"
              06.26.06 Left I/O
              06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
              06.30.06 It's Official - Stage I Seminoma
              Surveillance...
              Founded the Testicular Cancer Society
              6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

              For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

              Comment


              • #8
                Hallo unicycle,

                I am so sorry for what you are going through. I can feel your pain and your despair. I do not have knowledge about TC late relapse. My son has TC already two years, he underwent BEPx3 and RPLND. As a mother, the pain is not less then he thought. My life is full of despair as well, coz I don’t know what will happen tomorrow.

                But I try very hard to think, just take every day as possible as normal ,maybe in one or two years, some new treatments or new trail will be found or be launched. Nowadays everything changes faster, AI is also one of the hope for me. As long as I keep hoping, it makes me feel a little better.

                I wish I can help the people here as they helped me, when I needed. I know I cannot really offer valuable information for you. At least you should know, you are not alone. We are here.

                I wish you all the best.

                Amy,Ran’s mom
                Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma ,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teratoma .Back to surveillance 05/02/19 Blood work all normal

                08/23/2019 normal
                12/04/2019 normal.
                04/01/2020 normal.

                Comment


                • #9
                  Has he turned into a Teratoma?what is pathology?Please fill us in.

                  Comment


                  • #10
                    Oh my, I'm so sorry to hear about this. This hits really close to home for me, because our stories are just about identical being Stage II with EPx4 and then the RPLND. I know that situations like these are exceptionally rare, but that they happen. I'm sorry that you're having to deal with this again, especially after so long. IU is a great place. Darren Feldman at MSKCC in New York would also be another good option if you're looking for a second opinion.



                    StevePake.com | @K2xxSteve on Gab
                    (Social Media with actual privacy, cancer support groups, encrypted secure chat & more)

                    Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
                    My Survivorship Thread | All of my Blogs
                    C
                    ONTACT ME ANYTIME!

                    Comment


                    • #11
                      Thank you all for your kind words and support. They mean a lot to me. I'm on the Cisplatin / Etopiside tag team of salvage therapy drugs, and have made it successfully through week one. I do not know if the disease is resistant to these medications, however. One thing I wanted to ask the community though — I'm terrified of losing my hearing. As anyone would be of course. I've been told that there isn't much that can be done to combat the visceral hearing loss Cisplatin can bring upon you. But...is that true? It seems many oncologists and cancer teams are more concerned about treating the cancer than actually having a person who wants to be alive when the dust finally settles. Quality of life is important.

                      Are there any known — official or unofficial treatments you all who have been on the regimen — to protect your hearing? Any contacts or people you would reach out to or recommend?

                      Always appreciative of the support thus far.

                      Comment


                      • #12
                        I haven't heard of anyone losing their hearing from cisplatin, but ringing in the ears is not uncommon. While annoying,you can still hear.
                        Jan, 1975: Right I/O, followed by RPLND
                        Dec, 2009: Left I/O, followed by 3xBEP

                        Comment


                        • #13
                          Originally posted by unicycle View Post
                          Thank you all for your kind words and support. They mean a lot to me. I'm on the Cisplatin / Etopiside tag team of salvage therapy drugs, and have made it successfully through week one. I do not know if the disease is resistant to these medications, however. One thing I wanted to ask the community though — I'm terrified of losing my hearing. As anyone would be of course. I've been told that there isn't much that can be done to combat the visceral hearing loss Cisplatin can bring upon you. But...is that true? It seems many oncologists and cancer teams are more concerned about treating the cancer than actually having a person who wants to be alive when the dust finally settles. Quality of life is important.

                          Are there any known — official or unofficial treatments you all who have been on the regimen — to protect your hearing? Any contacts or people you would reach out to or recommend?

                          Always appreciative of the support thus far.
                          Here is something about hearing loss:
                          Brock P R et al. Sodium Thiosulfate for Protection from Cisplatin-Induced Hearing Loss. The FRESCO Randomized Clinical Trial. New England Journal of Medicine 2018, 378:2376-85
                          https://pubmed.ncbi.nlm.nih.gov/29924955/

                          Comment


                          • #14
                            Hi unicycle,

                            I’m sorry for your situation, but in your last message you appear to be calmer than in your first one, so I assume you had the first panic moment, the angry, the rage, and now you are assuming your situation and preparing for the war. GOOD.

                            I don’t know why someone told you that this cancer, at a late relapse, is not curable. I read somewhere that Dr. Einhorn said once: the most curable cancer of the world is TC. And the second most curable cancer of the world is relapsed TC.

                            Remember it.

                            Fight and break statistics. Many guys did it before.

                            Now, about the hearing loss. My brother took cisplatin and carboplatin, with carboplatin he experimented a significative hearing loss BUT only in the agude tones (sorry, don’t know how to say it properly). He recovered and now hear perfectly. He has, I have to say, some minor tinnitus. But he hears perfectly.

                            Vitamin B are recommended in many cases of nerve damage, although real benefit are not proven.

                            ANYWAY, if I were you, I wouldn’t take any pills, vitamins, supplements or anything during the chemo. You don’t know what side effects can have, or if the BEST side effect of all, the surviving, will be compromised with these suplements. It’s your life.

                            Best of lucks.
                            Last edited by Hermana; 05-05-20, 05:49 PM. Reason: Grammar errors

                            Comment

                            Working...
                            X