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  • Extremely Disturbing News

    Hey guys, I came to this site about 10 weeks ago when I discovered I had testicular cancer (embryonal carcinoma). I had a right io, and my afp markers kept going up. At first my doctors thought it was a mistake, if anything they should have gone down a little, so I got a second test. But it wasn't a mistake. I was not cured. At that point I was told I would need chemo, and I came to this site to find some comfort because I was scared.

    9 weeks later, I'm on my last week of chemo. (I got my last bleo shot on monday) My afp markers went from 40 to 4 in about 8 weeks. Essencially back to normal. I was going to be alright. Now here's the bad part.

    5 minutes ago I just got a call. They need me to come in and get another blood test, because they suspect that there has been an error somewhere along the line. According to the test, my afp markers are at 11. My doctor is confident that this is an error. This sounds very familiar.

    I'm kind of shaking right now. I feel very much like I'm back to the beginning, sitting in the urologists office, listening to him explain that there's probably some kind of error with the test. This is all very familiar ground, and I'm ****ing scared.

    The difference here, is that I'm still flushing the chemo out of my system from monday. Is it even possible for afp markers to go up during treatment? I want to know whats going on in my body. I don't want to freak out, I don't want to be naive, I just want some perspective on my situation.

    Please someone help me out here.
    Thanks.
    Sleep Without Dreams - 63 days of Chemotherapy

  • #2
    I understand a slight increase in AFP may result from liver damage caused by chemotherapy, and it's certainly not high enough to be certain it's caused by cancer. I don't think you need to be thinking about additional treatment at this point unless it continues to rise.
    Scott, [email protected]
    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


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    • #3
      Thanks man. I guess I'll just have to wait... and pray for liver damage I guess :-)
      Sleep Without Dreams - 63 days of Chemotherapy

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      • #4
        63days,
        I agree with Scott. You body has been through a lot and my money is on a lab error or transient liver tox. Keep flushing out the chemo and keep that blog going. When you get your Pulitzer I'm hitting you up for a signed first edition!
        Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

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        • #5
          Haha, thanks Karen!
          you got it
          Sleep Without Dreams - 63 days of Chemotherapy

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          • #6
            Wow sounds very similar to what I went through when I first had Embryonal Carcinoma. To answer your question: yes, it is possible for your AFP to continue going up during or after chemo. It would me resistance or refractory to chemo. Mine AFP went to normal 4 x EP, but six weeks later jumped to 22 then 53. . then 8 weeks after a tumor appeared inside my T5 vertebrae around the spinal cord. The tumor looked like a doughnut! So I eventually had a tandem autogolous stem cell transplant and so far i have nearly completely recovered. . .look normal and feel great, all at 25!

            Don't worry yourself. . . doesn't do any good. Trust me thats all I do is worry and it doesn't get you anywhere. it will probably be an error. . .but keep an eye on it you will do just fine. . .if you have any questions you can email me or PM me through this board!
            Diagnosed August 2005
            R/O August 2005 AFP 210

            4xEP beginning December 2005
            End Feb/March 2006 AFP 4.6
            April 2006 AFP 22 and rising

            Tandem Stem Cell Transplant 7/06 - 9/06
            December 07 AFP = 3.3
            December 07 CT = Clear!

            15+ months remission

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            • #7
              hi 63 days...

              I'm hoping you will get results quick...

              a few possibilities as you have read...the worst is the mental aspect...I recall wishing so bad I could just do everything at once...the waiting was horrendous...

              I too had embryonal and I too ended up have markers that icreased about 6 weeks post operation (orchiectomy)...the waiting between the repeat tests was tough..but when they saw the tumor (retroparet.) chemo began a few days later...

              one doc told me early on, whatever it is, it is, and whatever it is you will have to deal with it....honestly, best advice I got...You are doing everything you can do and whatever it is, good or bad...you can not wish it away....that thought of gee, I wish it were just 6 months ago, before all this and it could just be normal...nice wish, but not realistic...as soon as I stopped thinking like that and just followed the process, mentally it all became much easier.

              Embryonal is a very fast moving cancer, it in most cases where there is refractory, the cancer really progresses, even during chemo and the numbers increase fast...

              but as tccancecop wrote, if it is the worst case, the follow ups to chemo are still very effective.

              best wishes, and keep us posted.
              - lump first noticed 11/20/2005
              - I/O right Dec 8, 2005
              - 95% embryonal / 5% seminoma
              - normal markers PRE surgery
              - no vascular invasion, tunica free of cancer, epididymis free of cancer, lungs free, lymph free
              - Stage I diagnosis
              - surveillance
              - mid feb '06, beta hcg slightly elevated = 4.6...small enlarged lower node seen on CT scan...
              - 3BEP began feb 20, 2006
              - finished 3 BEP, last bleo, april 17, 2006
              - CT scan, blood markers, chest..all clear
              - back on surveillance

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              • #8
                Hi everyone! My AFP marker is at 5! So I'm okay!!

                Thanks for all your comments on this. My recommendation to anyone who goes through the same thing:

                Be unrealistically optimistic so you can enjoy the period of time of uncertainty before your test results come back. When the results come, you will have to deal with them then, preparing for the worst is pointless, whatever comes you can deal with, and if the tests come back clean, you will have tortured yourself over nothing.

                Thanks everyone! Have a great holiday!
                Sleep Without Dreams - 63 days of Chemotherapy

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                • #9
                  63days,
                  WHEW!!!! So glad that the repeat test came back clear for you!! Have a fantasitc Thanksgiving!!
                  Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

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                  • #10
                    Fantastic news!!
                    Scott, [email protected]
                    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


                    • #11
                      That's great news. Enjoy Thanksgiving, we all have a lot to be thankful for.
                      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.

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