Announcement

Announcement Module
Collapse
No announcement yet.

new member.. pT2

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

  • #31
    Originally posted by markovitz View Post


    I don't get it with restage. It means that you can start adjuvant any time? even after 4 months let's say? You just have to be restage and if it is all clear, that you still could choose adjuvant?

    RPLND is out of discussion in my case. (I'm in eastern europe)

    I had a spermogram before orchiectomy, wasn't great, but it was much much better that now.
    Of course, I would go to the bank, but the problem is that I do not have much time (you have to get 3-5 days of abstinence between).

    You are almost 2 years past BEP, how is your fertility now ?

    Well the guidelines recommend 6-8 weeks after orchiectomy. After that, no. And towards the end of 6-8 weeks oncologists tend to recommend a re-staging just to be sure.

    With a low sperm count, you should wait 3 days. I think I went on Monday, then Thursday, then Monday again. I tried to do Monday then Wednesday but the Wednesday sample was crap. So yes, the waiting was needed on my part.

    I haven't checked my fertility after BEP. My fertility is a mystery to me.
    Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

    7/1/2015: felt tiny lump on side of R testicle
    7/30/2015: Ultrasound shows 2 intra-testicular masses.
    7/31/2015: tumor markers normal, CXR clear
    8/5/2015: R orchiectomy
    8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
    8/14/2015: CT abdomen/pelvis clear, Stage 1b
    8/24/2015: started 1 x BEP

    Comment


    • #32
      Originally posted by RJKD View Post


      Well the guidelines recommend 6-8 weeks after orchiectomy. After that, no. And towards the end of 6-8 weeks oncologists tend to recommend a re-staging just to be sure.

      With a low sperm count, you should wait 3 days. I think I went on Monday, then Thursday, then Monday again. I tried to do Monday then Wednesday but the Wednesday sample was crap. So yes, the waiting was needed on my part.

      I haven't checked my fertility after BEP. My fertility is a mystery to me.

      Please, if you have a link to these kind of guidelines/procedures regarding chemotherapy, could you post it here?
      03/28/2017 - felt a tiny lump on my right testicle
      03/29/2017 - urology, ultra sound confirmation of tumour
      04/03/2017 - MRI abdomen/pelivis, 0.8/0.8/0.75 tumour confirmed, on upper pole of testicle, no lymph node enlarged
      04/03/2017 - blood markers normal.
      04/19/2017 - orchiectomy of the right testicle
      05/08/2017 - histopatology: 0.7/0.7/0.6 tumour, embryonal carcinoma, invasion of albugineea, LVI+ near albugineea. Spermatic cord not invaded. Associated lesions with seminoma in-situ. T2N0
      05/19/2017 - CT pelvis/abdomen/toracal , no metastasis, no adenopaties -> stage 1b
      06/11/2017 - MRI pelvis/abdomen for a restage, still no enlarged nodes, blood markers normal.
      06/13/2017 - started adjuvant 1xBEP

      Comment


      • #33
        Originally posted by markovitz View Post


        Please, if you have a link to these kind of guidelines/procedures regarding chemotherapy, could you post it here?

        I don't have an official guideline on me right now. But I can tell you from the largest study for stage 1b nonseminoma patients evaluating 1 x BEP, they did a restaging at 6-8 weeks to ensure stage 1 was the correct stage. So all the patients were restaged at that time, not earlier. Here it is directly from the paper, published in Mar 2009: "Risk Adapted Treatment in Clinical Stage 1 Nonseminomatous Germ Cell Testicular Cancer: The SWENOTECA Management Program":

        "Definitive CS1 was confirmed with a restaging 6-8 weeks after orchiectomy. The clinical staging investigations included clinical examination and CT of the thorax, abdomen, and pelvis. Serum tumor markers (hCG, AFP, and LDH) were assessed before and directly after orchiectomy, and weekly, if elevated initially, until final clinical staging."

        This is the largest study for 1 x BEP. It showed an approximate 3% relapse rate. So, to me, this is strong evidence that you can proceed how Einhorn is recommending.


        Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

        7/1/2015: felt tiny lump on side of R testicle
        7/30/2015: Ultrasound shows 2 intra-testicular masses.
        7/31/2015: tumor markers normal, CXR clear
        8/5/2015: R orchiectomy
        8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
        8/14/2015: CT abdomen/pelvis clear, Stage 1b
        8/24/2015: started 1 x BEP

        Comment


        • #34
          So, guidelines are based on studies like this. Can 1 x BEP be started at 10 weeks? or 12 weeks? We just don't know because nothing has shown it can or can't be done.
          Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

          7/1/2015: felt tiny lump on side of R testicle
          7/30/2015: Ultrasound shows 2 intra-testicular masses.
          7/31/2015: tumor markers normal, CXR clear
          8/5/2015: R orchiectomy
          8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
          8/14/2015: CT abdomen/pelvis clear, Stage 1b
          8/24/2015: started 1 x BEP

          Comment


          • #35
            Hello Markowitz

            I read through the thread and I would like to make a comment on your timeline. I had my Orchiectomy on 13/1/17. I didn't start chemo until 20/3/17, over 8 weeks later. 2 weeks prior to starting I was restaged as RJKD had mentioned from IIA to IIB. The reason I took so long was that at stage IIA I had the option of RPLND or Chemo. I was leaning towards chemo first, then I read a long thread started by another member here, his name is Stephen Pake. He had many issues going with 4 x EP regimen which is why I started to pursue the RPLND option. After finally finding a surgeon that could do it and take my insurance my lymph nodes had enlarged slightly which pushed me into IIB. At that point, the surgeon no longer felt comfortable doing the surgery and so ultimately I had no other choice but chemo. I can tell you this, and every other member here will agree, chemo is awful.....luckily you will only need to do one cycle. Most likely your hair will fall out, you'll probably develop some tinnitus, gain a bit of weight and the first (long) week you will be very tired and nauseated. Your doctor will prescribe you medication to help with nausea.

            I did 3 X BEP and my last cycle was two weeks ago. I saw that you mentioned something about cognition and I think that mine is slightly affected but, I read every day so I make an effort to keep my mind strong. I think the mental/emotional aspect, as others have mentioned is the toughest thing of all. I don't know if you are bald but being bald is terrible. Every day feels like winter, then looking at yourself in the mirror with no hair and wilted eyebrows feels like a kick in the pants (pun intended) to the ego. If I had the chance I would have done the surgery, even though the relapse rate may be higher going through 3 cycles is really tough.

            But, you are in the position of only needing one cycle. I think that surveillance is too risky given the 50% chance of relapse. So then we look at the surgery which has a 20-30% chance of relapse or the single cycle which has a much lower relapse rate. If you made a decision just based on relapse rate then at least for me I'd do the single cycle. Now if you take into consideration the side effects of chemo and the complications of the surgery (pre-chemo) then the choice is a bit tougher. With the surgery, you'd want to find an experienced surgeon who will try their best to save your ejaculatory function. If you haven't already read about it, RPLND can cause retrograde ejaculation, meaning your semen/sperm flow backward into your bladder rather than forward and out of your penis. This is due to a certain nerve that can be damaged during the procedure. You also have to deal with the recovery, possibility of infections, bowel obstructions or lymph fluid leakage. With chemo you know already most of the short term consequences but you're young like me, I'm 32 as well so you will make a recovery and you will make it through. The long term consequences are scary indeed but, with regular check-ups and living a healthy lifestyle you can try to minimize your risks as much as possible.

            After treatment, no matter which one you choose, you will be followed for 5 years. In that time, if anything arises, it can be dealt with. It is very important you follow your surveillance schedule after treatment and if you are a smoker, you need to stop immediately, especially if you do BEP. I can understand how hard it is to wait and see. I had my after chemo scan last week and I go to see my Oncologist tomorrow about it, this week has been very long!

            Good luck with everything, let us know what you decide!

            Comment


            • #36
              Just remember, chemo brain is not something necessarily DURING chemo, it can happen after and persist for months (sometimes years but rarely with 3 x BEP). Also, 1 x BEP will almost certainly cause you to lose your hair. And being bald is psychologically devastating. It was for me. Everybody thought I was dying. Tinnitus is touch and go with 1 x BEP and will almost certainly be temporary. You might want to look into "cold gloves" to minimize the chemo getting to the hands. My only major side effect that still lingers is mild Raynaud's in my hands. It's nothing major but it does bother me often whenever I have to lift an object or I'm working out. I think cold gloves could've mitigated that side effect. I just never knew that 90 units of Bleomycin could do that to my hands so I never considered cold gloves.
              Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

              7/1/2015: felt tiny lump on side of R testicle
              7/30/2015: Ultrasound shows 2 intra-testicular masses.
              7/31/2015: tumor markers normal, CXR clear
              8/5/2015: R orchiectomy
              8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
              8/14/2015: CT abdomen/pelvis clear, Stage 1b
              8/24/2015: started 1 x BEP

              Comment


              • #37
                Thanks a lot guys, it is very helpful for me what are you sharing!

                Good thing is that I am not a smoker, so this won't be a problem.
                I am not bald, instead I have longer hair, so this will be some kind of a shock for me, I will get through it. But indeed, everyone that knows me will think I am dying already, so this will be hard. I have this hair since I was 16

                I do not know how I will convince my oncologist to restage me. I had my last CT on 18/05, and I am supposed to start chemo on 12/06 or 19/06. My oncologist said that we are ok if we stay in 1 month window from last CT/blood markers.
                (blood markers I can check them, anyway they were never elevated in my case)
                Probably I will try to do an MRI abdomen+pelvis on my own money... and maybe an x-ray pulmonary (but I need doctor's permission for this).

                About cognition problems, I just hope it won't happen. I actually feel cognition problems right now, but I'm sure it's because of a lot of stress.

                I'm expecting to regain my moral strength after starting chemo actually. Why? Because to make a choice it's always the hardest part and it devastates me. Especially when I have a friend with 100% EC, LVI+ who choosed surveillance, and he is almost a year now post orchiectomy and he is fine. Well, back then, his doctor recommended him surveillance, because he thought that relapse rate is 25-30%.

                @RJKD: Your Raynaud's sound quite scarry to me. I'm an avid snowboarder, and I like going into mountains all the seasons. I do have good blood circulation I guess, do not know if this matters (Many times I can stay without gloves in winter and won't get cold hands).
                If there is a way to mitigate this phenomen, I would try it. That would mean wearing some frozen gloves during chemo or after? (i searched a little bit on google)
                Also, could this side-effect to be temporary ?

                @Daniel_Eye: I'm sure will be ok with your results! Wish you all the best.
                03/28/2017 - felt a tiny lump on my right testicle
                03/29/2017 - urology, ultra sound confirmation of tumour
                04/03/2017 - MRI abdomen/pelivis, 0.8/0.8/0.75 tumour confirmed, on upper pole of testicle, no lymph node enlarged
                04/03/2017 - blood markers normal.
                04/19/2017 - orchiectomy of the right testicle
                05/08/2017 - histopatology: 0.7/0.7/0.6 tumour, embryonal carcinoma, invasion of albugineea, LVI+ near albugineea. Spermatic cord not invaded. Associated lesions with seminoma in-situ. T2N0
                05/19/2017 - CT pelvis/abdomen/toracal , no metastasis, no adenopaties -> stage 1b
                06/11/2017 - MRI pelvis/abdomen for a restage, still no enlarged nodes, blood markers normal.
                06/13/2017 - started adjuvant 1xBEP

                Comment


                • #38
                  I think it's important to reiterate that chemo affects everyone differently. I am also stage 1B NSGCT and was faced with the exact same dilemma only a few weeks ago. I also was not comfortable with the 50+% relapse rate with surveillance but similarly thought the 20-30% rate with RPLND was high too. In the end I chose 1xBEP and am about to start my third week.

                  My chemo experience so far hasn't been too bad. The first week I did get some acid reflux (took Nexium) and some nausea. I threw up 3 or 4 times the first weekend and was pretty exhausted as well. The second week (bleo only) I had a reaction to the bleo which caused a fever and I was hospitalized on antibiotics for 2 days. Again, not terrible just inconvenient. I haven't experienced any neuropathy and ringing in my ears only a handful of times and it goes away. As far as chemo brain, yea sometimes I feel like I'm in a fog and large crowds or busy environments stress me out a bit more than before but this is again more of an annoyance than anything and hopefully temporary. I'm expecting to lose my hair this week, but honestly I don't think it will bother me that much. I've always wondered what I look like bald.

                  I write this only to show that everyone's body reacts differently to treatment. If you search the forum you will find people with vastly different RPLND and surveillance stories too. Some people's bodies don't recover as quickly from surgery; others were exercising 3-4 weeks post op. Likewise some people are perfectly ok with surveillance and it's wreaks mental havoc on others.

                  In the end your survival will not change, this is beatable any way you look at it. Keep a good attitude and just be comfortable with whatever choice you make. I wish you the best of luck with your decision.
                  26 Cleveland, OH
                  3/01/17 - Found lump on right testicle
                  4/21/17 - Went to ER. 4x3.7x2.5 cm tumor in right testicle
                  4/22/17- Pre/op LDH 194, AFP 41, HCG 46, CT scan clear, X-ray clear
                  4/27/17 - Right I/O. Non-seminoma with LVI. 70% EC, 20% Yolk Sac, 10% Teratoma
                  5/16/17 - Markers normalize, CT clear. Stage 1B
                  5/22/17 - Start 1xBEP

                  Comment


                  • #39
                    Originally posted by markovitz View Post
                    Thanks a lot guys, it is very helpful for me what are you sharing!

                    Good thing is that I am not a smoker, so this won't be a problem.
                    I am not bald, instead I have longer hair, so this will be some kind of a shock for me, I will get through it. But indeed, everyone that knows me will think I am dying already, so this will be hard. I have this hair since I was 16

                    I do not know how I will convince my oncologist to restage me. I had my last CT on 18/05, and I am supposed to start chemo on 12/06 or 19/06. My oncologist said that we are ok if we stay in 1 month window from last CT/blood markers.
                    (blood markers I can check them, anyway they were never elevated in my case)
                    Probably I will try to do an MRI abdomen+pelvis on my own money... and maybe an x-ray pulmonary (but I need doctor's permission for this).

                    About cognition problems, I just hope it won't happen. I actually feel cognition problems right now, but I'm sure it's because of a lot of stress.

                    I'm expecting to regain my moral strength after starting chemo actually. Why? Because to make a choice it's always the hardest part and it devastates me. Especially when I have a friend with 100% EC, LVI+ who choosed surveillance, and he is almost a year now post orchiectomy and he is fine. Well, back then, his doctor recommended him surveillance, because he thought that relapse rate is 25-30%.

                    @RJKD: Your Raynaud's sound quite scarry to me. I'm an avid snowboarder, and I like going into mountains all the seasons. I do have good blood circulation I guess, do not know if this matters (Many times I can stay without gloves in winter and won't get cold hands).
                    If there is a way to mitigate this phenomen, I would try it. That would mean wearing some frozen gloves during chemo or after? (i searched a little bit on google)
                    Also, could this side-effect to be temporary ?

                    @Daniel_Eye: I'm sure will be ok with your results! Wish you all the best.

                    My recommendation is to try cold gloves during chemo, especially on Bleomycin days. Bleomycin has a short half life of a few hours. So it is removed by the body in a few hours. I would at least try the cold gloves or at least submerging your hands in cold water for a few hours during those days. This is all experimental. No oncologist will know what you are doing. And no oncologist knows about Raynaud's after 1 x BEP. They simply don't have enough TC patients to know these things (except for Einhorn).

                    It's a permanent side effect. I've noticed no change since chemo. Actually I first noticed it 1 month after chemo while working out in the gym. It hasn't changed since then.

                    Even if your blood markers were never elevated, does not mean they cannot become elevated. Make sure you check them.
                    Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

                    7/1/2015: felt tiny lump on side of R testicle
                    7/30/2015: Ultrasound shows 2 intra-testicular masses.
                    7/31/2015: tumor markers normal, CXR clear
                    8/5/2015: R orchiectomy
                    8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
                    8/14/2015: CT abdomen/pelvis clear, Stage 1b
                    8/24/2015: started 1 x BEP

                    Comment


                    • #40
                      I know about 5 people that did 1 x BEP. At least 3 of us have some mild Raynaud's. So, I'm not an anomaly here. And 2 of us had significant chemo-brain for months. 3 had tinnitus that was temporary. None of us tried cold gloves. It's worth a try.
                      Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

                      7/1/2015: felt tiny lump on side of R testicle
                      7/30/2015: Ultrasound shows 2 intra-testicular masses.
                      7/31/2015: tumor markers normal, CXR clear
                      8/5/2015: R orchiectomy
                      8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
                      8/14/2015: CT abdomen/pelvis clear, Stage 1b
                      8/24/2015: started 1 x BEP

                      Comment


                      • #41
                        Originally posted by RJKD View Post

                        Sperm count can be low for many reasons. Most likely you have had subfertility forever and only known about it now. Sub-fertility and TC tend to go together.
                        I would freeze as many vials as you can if yours are not of good quality. That's what happened to me. I kept returning to the sperm bank to give more samples.

                        well, I was second time to the bank. Same result, very few sperm (hundreds thousands only?) but with good motility. They told me to relax while this is sufficient for IVF. I have many tries there, because of the volume of the ejaculated semen . So, it seems that this is the best I can get (offer :P) right now, IVF. Also, they told me that they have never seen such a thing (I have spermogram before and after orchiectomy and it was constantly decreasing). Hopefully, things will improve 2 years after chemo Many unexpected things can happen in our body
                        03/28/2017 - felt a tiny lump on my right testicle
                        03/29/2017 - urology, ultra sound confirmation of tumour
                        04/03/2017 - MRI abdomen/pelivis, 0.8/0.8/0.75 tumour confirmed, on upper pole of testicle, no lymph node enlarged
                        04/03/2017 - blood markers normal.
                        04/19/2017 - orchiectomy of the right testicle
                        05/08/2017 - histopatology: 0.7/0.7/0.6 tumour, embryonal carcinoma, invasion of albugineea, LVI+ near albugineea. Spermatic cord not invaded. Associated lesions with seminoma in-situ. T2N0
                        05/19/2017 - CT pelvis/abdomen/toracal , no metastasis, no adenopaties -> stage 1b
                        06/11/2017 - MRI pelvis/abdomen for a restage, still no enlarged nodes, blood markers normal.
                        06/13/2017 - started adjuvant 1xBEP

                        Comment


                        • #42
                          Originally posted by RJKD View Post
                          I know about 5 people that did 1 x BEP. At least 3 of us have some mild Raynaud's. So, I'm not an anomaly here. And 2 of us had significant chemo-brain for months. 3 had tinnitus that was temporary. None of us tried cold gloves. It's worth a try.

                          Is it common to have testosterone deficit after 1xBEP ? My oncologist said that I might get fat because of possible testosterone problems during chemo... Is it reversible?
                          03/28/2017 - felt a tiny lump on my right testicle
                          03/29/2017 - urology, ultra sound confirmation of tumour
                          04/03/2017 - MRI abdomen/pelivis, 0.8/0.8/0.75 tumour confirmed, on upper pole of testicle, no lymph node enlarged
                          04/03/2017 - blood markers normal.
                          04/19/2017 - orchiectomy of the right testicle
                          05/08/2017 - histopatology: 0.7/0.7/0.6 tumour, embryonal carcinoma, invasion of albugineea, LVI+ near albugineea. Spermatic cord not invaded. Associated lesions with seminoma in-situ. T2N0
                          05/19/2017 - CT pelvis/abdomen/toracal , no metastasis, no adenopaties -> stage 1b
                          06/11/2017 - MRI pelvis/abdomen for a restage, still no enlarged nodes, blood markers normal.
                          06/13/2017 - started adjuvant 1xBEP

                          Comment


                          • #43
                            MARKOVITZ~ I hope someone who did 1xBEP can answers your questions. I have read that other men have had issues with sperm quaility/motility when banking even before chemo.
                            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.

                            Comment


                            • #44
                              Originally posted by markovitz View Post


                              Is it common to have testosterone deficit after 1xBEP ? My oncologist said that I might get fat because of possible testosterone problems during chemo... Is it reversible?
                              I have not heard that low testosterone is common after any type of chemo, however, some guys don't produce enough T with only one testicle and need TRT to maintain proper levels.Igained about 20 pounds during 3xBEP, but that was likely the steroid anti-nausea meds they give. I lost that fairly quickly once chemo was done and I started exercising again.

                              Also, being bald didn't bother me a bit, but being FAT & bald did ;o)

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

                              Comment

                              Working...
                              X