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Hey Everyone. Relapse just diagnosed, now what?

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  • Hey Everyone. Relapse just diagnosed, now what?

    Hi everyone, this is my first time stumbling across this website. Here's what's been going on.

    My brother diagnosed with Stage IB left side non-seminoma TC (60non-40sem) in October 2009. He had an L-RPLND in December and has been free and clear since then.

    I was diagnosed with Stage IB left side non-seminoma TC (80-20) in early November 2009. I had my L-RPLND in February. The biopsy of the lymph nodes indicated that cancer had not spread to the lymphs. The only initial complication with that has been some tingling in my left leg and retrograde ejaculation. The retrograde ejaculation has progressed from nothing at all to a few small drops, to a decent amount but I'm still not firing with a full clip and my leg still tingles.

    In mid-May I went in for my first chest x-ray. That was Friday 5/14. That evening my urologist called me to inform me that I needed a CT scan, because something didn't look good on my x-ray. At that moment I knew what the CT was going to show and I was right. Cancer has metastasized in my lung, about a 2cm mass. I received confirmation of that this afternoon.

    Prior to the initial diagnosis and up through today I have been a marijuana user, what I would qualify as moderate - heavy use. I've smoked for the last 6 years at least once a day, although for the past year, most of that smoking has been vaporizing. Other than that and weekly consumption of alcohol I have lead a healthy lifestyle.

    So now for the questions.

    1. Does anyone know what kind of chemo-therapy I'm likely to receive (based on your experience) and how long it will last?

    2. Has anyone seen any sort of study or anecdotal evidence linking marijuana use and relapse, or for that matter smoking? (I've seen the study tentatively linking TC to marijuana use, seems like water under the bridge at this point, but I'm curious if I contributed to the relapse, based on my brothers diagnosis and lack of smoking, I don't think it is linked to the initial TC diagnosis, I'm asking specifically about relapse)

    3. Since I still have a fair amount of retrograde ejaculation, what am I looking at in terms of fertility? My GF would prefer if I could still get her pregnant, but kids are more like 5+ years away.

    4. What other advise is out there? Has anyone had similar experiences? I don't need the stay strong you'll beat it stuff, I'm just trying to understand what else to expect.

    Thanks everyone

  • #2
    sorry for the relapse.....what was you're original pathology report on the tumor?....did it contain EC or chorio?....I ighly doubt marijuana played any role at all in your relapse but they may suggest EP over BEP as a chemo regimen because of the possible lung issues with the Bleo....you'll either get 4XEP (12 weeks) or 3XBEP (9 weeks).....as far as fertility goes the only way to determine that is by a semen analysis.....you may also want to consider sperm banking before treatment....best of luck and keep us posted....
    19 Nov 09 Dx Metastaic Seminoma
    25 Nov 09 Right I/O....Primary tumor burned out
    Stage IIB
    4 JAN 10 - 2 MAR 10 3XBEP
    7 APR 10 All Clear....Surveillance

    Comment


    • #3
      I highly doubt any link between MJ and TC could be found. I never touched the stuff before I was diagnosed. You're looking at either the BEP or EP chemo regimens. Try as best you can to stay hydrated. I'm convinced that it's the key to feeling well and staying on top of your nausea while you're on chemo. You'll be given a variety of anti-nausea meds. Ativan worked the best for me. I hate phenergan and reglan. Of course, MJ will help with nausea as well, if you plan to continue that. Stick with that vaporizer though so that you don't shred your lungs. Good luck.
      http://seanmartella.blogspot.com/ <---full story here
      Diag. 12/07, stage 3 non/sem mix lg tumors in abd. lymph nodes, sm mets in R lung. 01/08-R Orch 02/08-4xBEP, 08/08-RPLND remove tertoma. 08/08-Rlpsd, sm tumors in liver, 09/08-2xHDC/stem cell 12/08-complete remission, 06/09-rlpsd tumor in abdmnl node, 07/09-2nd RPLND, 08/09-all clear, rmssn, 10/09-rlpse, mult mets in liver, lungs, and abdmn. 10/09 -Tax/Gemzar begun, 02/10-Tax/Gem failed 03/2010 - ARQ-197 in NY. 05/10 - Oxalitplatin begun

      Comment


      • #4
        Hey and sorry to hear about the relapse, just stay strong as you say and the next 9 or 12 weeks will soon be behind you. I haven't read anything linking marijuana and relapse. Did you bank sperm before your RPLND? (or orchiectomy)?

        Partner diagnosed August 2009, Right I/O, 90% EC, 10% Seminoma, with LVI
        Told stage 1B (?), treated 7 weeks later with adjuvant 2xBEP
        March 2010 MRI - clear
        July 2010 CT - clear

        Comment


        • #5
          Originally posted by agalleg1 View Post
          My brother diagnosed with Stage IB left side non-seminoma TC (60non-40sem) in October 2009. He had an L-RPLND in December and has been free and clear since then.

          I was diagnosed with Stage IB left side non-seminoma TC (80-20) in early November 2009. I had my L-RPLND in February.
          So both you and your brother have been diagnosed with TC? Out of curiosity, any other history in your family? Are you and your brother twins?
          Originally posted by agalleg1 View Post
          1. Does anyone know what kind of chemo-therapy I'm likely to receive (based on your experience) and how long it will last?
          Like gilly and Sean have said, either 3xBEP or 4xEP are the way to go unless your marker levels are high and the metastases are large, in which case you would get 4xBEP.
          Originally posted by agalleg1 View Post
          2. Has anyone seen any sort of study or anecdotal evidence linking marijuana use and relapse, or for that matter smoking? (I've seen the study tentatively linking TC to marijuana use, seems like water under the bridge at this point, but I'm curious if I contributed to the relapse, based on my brothers diagnosis and lack of smoking, I don't think it is linked to the initial TC diagnosis, I'm asking specifically about relapse)
          There is no substantiated link whatsoever. I am very skeptical of the study you mention (we have discussed it at length here).
          Originally posted by agalleg1 View Post
          3. Since I still have a fair amount of retrograde ejaculation, what am I looking at in terms of fertility? My GF would prefer if I could still get her pregnant, but kids are more like 5+ years away.
          If you are already seeing improvement, chances are you will be OK; however, you should, if at all possible, bank sperm before chemotherapy.
          Originally posted by agalleg1 View Post
          4. What other advise is out there? Has anyone had similar experiences? I don't need the stay strong you'll beat it stuff, I'm just trying to understand what else to expect.
          There really isn't much to add. Others can speak better as to what you can expect during chemotherapy. The bottom line is that your prognosis, despite the relapse setback, is quite good.

          Welcome to the forum. Keep firing away with questions as they come along.
          "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
          11.22.06 -Dx the day before Thanksgiving
          12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

          Comment


          • #6
            Your best weapon is to be well-informed, and this forum is a great resource.

            Other good resources: the NCCN guidelines for testicular cancer are available online; they are free, you have to register to access them but they are available free to anyone.
            Chemo regimens are described there.

            My son also had metastasis to the lungs; his chemo regimen was 3XBEP (which takes 9 weeks). Bleomycin, etoposide, cisplatin. Note some oncologist avoid the bleomycin for fear of lung damage and recommend 4XEP which takes 10 weeks; but Dr Einhorn feels the danger is greatly exaggerated. Einhorn recommended the BEP for my son even though he was a smoker, because he is young and has good pulmonary function (test was done to confirm that).

            My son's oncologist did not seem to be familiar with what was in the NCCN guidelines, although he claimed that those are what he followed. He also did not follow the recommended hydration protocols (which I discovered because the first two days of chemo took only about an hour, much too short to do the hydration needed to avoid kidney damage). I insisted that the nurse who administered the chemo contact Jackie Brames at Dr Einhorn's office, who supplied the hydration regimen that they use.

            Dr Einhorn at Indiana University, who pioneered the BEP chemo regimen and is famous for having treated Lance Armstrong, and his assistant Jackie Brames, will respond to e-mails the same day; they are a truly incredible resource for your oncologist and you. If you need expert opinions to back you up with any concerns you have, they are available, either for your oncologist or for you to contact directly if your oncologist is not interested.

            Comment


            • #7
              I just want to clarify something on the chemo cycles. One cycle is of chemo is three weeks, in that three week period your first five days will be spent getting chemo. When that week is done you will get a full two weeks to recover. That schedule will be followed for either three or four cycles. So it's 5 days of chemo Mon-Fri and 16 days off, which will bring you back to a Monday.
              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


              • #8
                Originally posted by dadmo View Post
                I just want to clarify something on the chemo cycles. One cycle is of chemo is three weeks, in that three week period your first five days will be spent getting chemo. When that week is done you will get a full two weeks to recover. That schedule will be followed for either three or four cycles. So it's 5 days of chemo Mon-Fri and 16 days off, which will bring you back to a Monday.
                For me, it is different.

                BEP-----EP----EP----EP----EP
                Friday---Sat---Sun---Mon--Tues

                Mon, Tues, Wed, Thurs - all off

                Fri - B

                Mon, Tues, Wed, Thurs - all off

                Fri - B

                That is a full cycle for me; I have 4 of these total and am almost done with my first full cycle (will be come this Friday).

                Comment


                • #9
                  Yup, the bleo is given once a week.
                  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


                  • #10
                    Perhaps I read your post wrong then I was getting jealous as I read it as "you have 5 days on and then 2 full weeks off of nothing".

                    Comment


                    • #11
                      Originally posted by seand View Post
                      Perhaps I read your post wrong then I was getting jealous as I read it as "you have 5 days on and then 2 full weeks off of nothing".
                      He is correct if you are doing 4xEP. If it's BEP, those 2 full "off weeks" would have 1 day each of Bleo only.
                      12/30/09-diagnosed, 5cm mass on right, 5mm nodule on left, abdomenal lymph
                      nodes of 3cm and 4cm
                      1/14/10-Right I/O, removed nodule and 1/3 of left testicle
                      1/21/10-Path back: 60% yolk sac, 20% teratoma, 15% EC, 5% chorio.
                      L/V invasion - Present
                      2/8/10- 4/26/10 Chemo 4xBEP, blood clot in lungs, port removed, 2 PICC lines after 1st one leaked
                      5/21/10 - CT shows lymph nodes 4.7 & 2.8cm, but no active cancer
                      6/23/10 - RPLND w/ Dr Sheinfeld @MSKCC
                      6/8/13 - Still cancer free!

                      Comment


                      • #12
                        Re the sperm banking, if cost is a concern (as it was for my son, who had recently lost his job), Lance Armstrong's Fertile Hope Foundation can help:
                        http://www.fertilehope.org/financial...ance/index.cfm

                        Wishing you a quick recovery & few side effects... sorry you have to fight this nasty thing again!
                        ~Carole


                        Son Nick, age 25
                        2/26/2010 Left I/O
                        100% Seminoma, Stage IIC
                        6cm Tumor in abdomen w/ lymph involvement
                        Started 3X BEP 3/29/2010
                        *ALL CLEAR 9/15/10!!! *
                        Lung clot dissolved!

                        Comment


                        • #13
                          My husband's Onc asked if he smoked MJ (not since high school, lol) but said that it can elevate the bHGC tumor markers and make them seem inflated. ZI have never heard this before, but it's best to be honest with your onc so you can get accurate test results.

                          GL with your treatment!

                          Comment


                          • #14
                            Did a quick google search, http://www.google.com/search?q=marij...ticular+cancer , and found that on MJ linking to cancer. Looks like the study was done back in 2009. Honestly though it doesn't seem like they had a very controlled environment to do the study in.

                            If usage did link to cancer, that could pose a lot of problems with everyone who's ever advocated it's use for cancer patients to help with pain and eating issues.
                            5/4/2010 - Diagnosed with TC
                            5/20/2010 - Right I/O - 1.8cm - no LVI - 70% Seminoma - 30% EC - Less than 1% Teratoma - Stage 1A
                            6/7/2010 - RPLND Scheduled. Oncologist requested for second opinion.
                            6/15/2010 - Oncologist seen and Chemo not an option for stage 1A.
                            7/6/2010 - Right sided template RPLND - Surgeon Dr. Stephenson(Huntsman Cancer Center)
                            7/12/2010 - Pathology clean on surveillance.
                            11/11/2010 - Clean

                            Comment


                            • #15
                              MJ and bHCG levels???

                              Does anyone know how much the bHCG tumor marker is elevated with MJ? I'd heard this before but hadn't heard anything about how much. My son is now done with 4BEP and had lung surgery to remove his nodule (all scar tissue - yippee!!!). His bHCG is back down to < 0.5 - perfect!!! He's now happy, healthy, and back to college while he does his monthly follow-ups. So I was wondering (given the abundance of MJ at his school) whether MJ really will raise bHCG levels enough to make us wonder whether it's MJ or relapse??

                              Good luck, agalleg! My son just had four cycles of BEP (due to high bHCG), which was no walk in the park, but it certainly wasn't horrible for him. It did its job and killed his lung metastasis!.
                              1/7/2010 son Colin, age 20, diagnosed. bHCG=5114.
                              1/8 CT chest: 2.1cm nodule in lwr L lobe
                              1/12 Right I/O 1.9cm, Path:non-sem: 80% Chorio, 20% Embryonal, vascular invasion, in cord inc margin
                              1/21 brain MRI clean, PET: lung nodule 2.7cm
                              1/27 bHCG=9349, StageIIIB
                              2/1- 4/20 4xBEP
                              4/30 lung nodule removed - dead tissue
                              ....After Cycle1...C2...C3...C4....aft....ref rng
                              bHCG =..41.....7....3.4...1.7..<0.5...0-5.1
                              AFP =....6.8...10...8.4....11....5.5....0-8.9

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