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  • Drained

    Hi All,

    I am new to the whole forum thing but thought it would be good for me to see if any of you guys have experienced the same probs as me! I apologise in advance if I am not doing this correctly!

    I finished my chemo (2XBEP) in May 2006 and since then have never felt the same. I find it incredibly difficult to get up in the morning, I am really spotty , I have terrible mood swings, feel dizzy, thirsty, feel generally pants and have to eat a lot to get me through the day?

    Is this just me? I have recently been sent to the hormone sepcialist, they took a load of blood and I will be seeing them on the 28th Feb for a follow up. My Oncologist says there are a couple of very minor issues with my bloods but would not go into more detail.

    Is there anything I should be eating/doing to make life a little easier?

    I really appreciate your help and it has been good to read your threads as I have been able to relate to them.

    Love Kev

  • #2
    Well I have found if you sit back and just let the doctors do things without asking questions and making suggestions, you wont get everything done, ask your doctor for a copy of all the blood tests(you are legally entitled to this and they shouldnt hesitate.)
    It sounds like afew things arnt in place and could be explaining why you feel how you do, although its more likely that possibly you could benefit from testosterone replacement therapy, if your LH and FSH is elevated regardless of your T level.
    List here what is wrong with your labs and we can probly suggest something in terms of diet.
    Aged 23 ;; 09/06 left I/O ;; Markers normal ;; 100% Seminoma Stage 1. ;; 10x8x16mm & 7x7x8mm ;; rete testis invasion. ;; no vascular invasion. ;; surveillance. ;; HRT.

    Comment


    • #3
      Reply

      Thanks Michael, When I get the labs I will put them on this board. Thanks for the advice and you are right unless you push you dont get! Hope all is well with you now....

      Comment


      • #4
        make certain to eat well...I changed my diet when I started out on chemo...no red meat, no pork, no dairy....as these are very hard to digest...and believe me, I love red meat...

        But to date, I think I only had red meat twice and still no pork or milk...and I feel very good - no problems...

        The change in hormones of course affects you a bit for 6 months or so...and when I first started to try to run, for about 3 months I could not go more than 300 yeards without my legs cramping up...but no longer...

        I lift some weights each am and run at night...

        But diet can help a good deal...good luck with it.

        pete
        - 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

        Comment


        • #5
          Diet

          Thanks for the advice. I will avoid red meat and milk for a few weeks to see if this makes a difference. Shouldn't be that hard -whatever!! This is gonna be tough but if it works it will be great.

          Sorry to carry on with my troubles, would just like your opinion, I have over the last week had a seriously bad cold and my remaining testicle has started to really ache ever since the cold started. I have been in touch with oncologist and he says it will be related to my cold. Can this be true? If the pain has not passed in two/three days I will go in and get a scan. There are no lumps on the testicle that is hurting. Only natural to think it is cancer again. What do you reckon? Have you had any pain since diagnosis? Also I suppose this could be linked to why I feel poorly all of the time?

          Hope all is well with you now. Great to hear you are training and getting fit, this I imagine is a great relief for you.

          Comment


          • #6
            I had pain in my remaining testicle since 2 weeks after my I/O up until last week, it got to the point where it hurt every day, usually when I sat down.
            I started injections afew days ago and it seems to of gone away or gotton better, Andriol didnt help it at all, but I think injections have.
            Aged 23 ;; 09/06 left I/O ;; Markers normal ;; 100% Seminoma Stage 1. ;; 10x8x16mm & 7x7x8mm ;; rete testis invasion. ;; no vascular invasion. ;; surveillance. ;; HRT.

            Comment


            • #7
              I think what surprised me most was how long it takes your body to adjust hormone levels...and get back from the chemo...

              I am fine now...it's been almost one year since I began my 3xbep...

              but about 3 months post chemo, my nipples became sore and I developed hard tissue under my nipples...I thought the cancer had returned...by some research and doc visits showed it was just my body trying to normalize...

              my cousins wife has a rare form of cancer that can not be cured...tumors just grow, they remove them...and then they come back...she's had so many surgeries in the past 15 years...she has had severe ab cramps for the past 10 years...almost everyday...she's tried everything...about 6 months ago somone suggested she stop drinking milk...no cramps since...

              i'll be interested to know how you make out...
              - 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

              Comment


              • #8
                Originally posted by petep
                but about 3 months post chemo, my nipples became sore and I developed hard tissue under my nipples...I thought the cancer had returned...by some research and doc visits showed it was just my body trying to normalize...
                This is what the doctor told you?
                he said its your body trying to normalise?
                Hard tissue under the nipples is female breast tissue due to estrogen dominance from low testosterone.
                Aged 23 ;; 09/06 left I/O ;; Markers normal ;; 100% Seminoma Stage 1. ;; 10x8x16mm & 7x7x8mm ;; rete testis invasion. ;; no vascular invasion. ;; surveillance. ;; HRT.

                Comment


                • #9
                  reply

                  The pain seems to be passing now although still aches now and again. I spoke to my testicular nurse and he has told me to wait until my cold passes (which it still hasn't!) and to call him regularly to give him updates. Got a little worried there for obvious reasons! Hope it is all okay.

                  Hope your cousin is okay, sounds like a nightmare. Good to see she is on top of it.

                  With regards to milk, it is funny because I recently started having cereal for breakfast whereas before never did, I always had toast or nothing. Seems to be a great coincidence to me. So have stopped having milk and do actually feel a little better within myself although still have a stinker of a cold. So gonna keep to the new regime, really starting to miss beef already!!!

                  Take care guys and thanks for your support. Hope to talk soon when I get my hormone results - 28th Feb!

                  Michael: What injections are you having and why?
                  Last edited by Rowester; 02-11-07, 05:46 PM. Reason: forgot

                  Comment


                  • #10
                    Originally posted by Michael112
                    This is what the doctor told you?
                    he said its your body trying to normalise?
                    Hard tissue under the nipples is female breast tissue due to estrogen dominance from low testosterone.
                    My son has breast tenderness and hard tissue as well.

                    The hard tissue is better known as "breast buds" in growing young girls. (they are not big enough to make him feel self concious. "I think")

                    We asked my sons oncologist about hormone treatment and he told us they don't do that.

                    He said that the remaining testicle will grow larger and begin to make up the lost testosterone later.

                    He also told us the only way to do anything about the "breast buds" is to radiate them.

                    I was skeptical about his information because I read on this board that some people are using hormone replacement therapy.

                    Any comments?

                    Son Anthony DX 12/11/06
                    L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
                    4XEP 1/29-4/6/ 07
                    AFP started increasing3 wks later
                    Residual abdominal mass found on CT
                    RPLND 6/8/07
                    Cancer in pathology-
                    80% mature teratoma, 20% Yolk Sac. --
                    No adjuvent chemo and
                    AFP normalised

                    July 22, 2010 ---- 3 years all clear!

                    Comment


                    • #11
                      Originally posted by petep
                      make certain to eat well...I changed my diet when I started out on chemo...no red meat, no pork, no dairy....as these are very hard to digest...and believe me, I love red meat...

                      But to date, I think I only had red meat twice and still no pork or milk...and I feel very good - no problems...

                      The change in hormones of course affects you a bit for 6 months or so...and when I first started to try to run, for about 3 months I could not go more than 300 yeards without my legs cramping up...but no longer...

                      I lift some weights each am and run at night...

                      But diet can help a good deal...good luck with it.

                      pete
                      The chemo nurses told my son to eat whatever he wants. So far he has not had any problems with any foods.

                      He has had constipation, but I assume that is from the vicodin (since he started having problems with it before he started chemo)

                      Just out of curiosity ... what kind of problems did the red meat, pork and dairy cause for you?

                      I will pay close attention to this as my son goes through the next 3 rounds of chemo.

                      Tammy

                      Son Anthony DX 12/11/06
                      L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
                      4XEP 1/29-4/6/ 07
                      AFP started increasing3 wks later
                      Residual abdominal mass found on CT
                      RPLND 6/8/07
                      Cancer in pathology-
                      80% mature teratoma, 20% Yolk Sac. --
                      No adjuvent chemo and
                      AFP normalised

                      July 22, 2010 ---- 3 years all clear!

                      Comment


                      • #12
                        Originally posted by mstlyn
                        My son has breast tenderness and hard tissue as well.
                        I experienced this after my orchiectomy, but it cleared up on its own within a few months.
                        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


                        • #13
                          Originally posted by Scott
                          I experienced this after my orchiectomy, but it cleared up on its own within a few months.
                          Good to know..

                          Nice to see you around Scott! Nice photo with you and Lance too ..

                          Son Anthony DX 12/11/06
                          L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
                          4XEP 1/29-4/6/ 07
                          AFP started increasing3 wks later
                          Residual abdominal mass found on CT
                          RPLND 6/8/07
                          Cancer in pathology-
                          80% mature teratoma, 20% Yolk Sac. --
                          No adjuvent chemo and
                          AFP normalised

                          July 22, 2010 ---- 3 years all clear!

                          Comment


                          • #14
                            My son also had breast tenderness that took a few months to go away. It's really quite common with testicular cancer. Your doctor may not do hormone replacement but it's not a bad idea to get his testosterone level checked. It could be useful as a baseline in the future.
                            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


                            • #15
                              I see a couple of epople weighed in already, that also had the breast tenderness...the doc did cover the possibilities of low testosterone etc...but since I was not feeling tired, had facial hair, libido etc...he said give it some time to "normalize"...that was the context...I should have explained this better.

                              Re: the red meat, pork, milk...I had no dietary restrictions also...it was just a decision that I made because everything I read...everything...said that red meat, pork and milk is hard for a body to digest...a lot of energy expended relative to the benefits....

                              Believe me, I am not an anti meat guy...I hunt, fish etc....and last night actually had a steak as it was a dinner event and the only option was steak....so don't take my diet comments the wrong way...My good friend from CO just sent me 6 backstrap venison steaks, and venison breakfast sausage and venison burgers....it'll probably last me 3 years these days.

                              Many have posted on this board that during chemo eat whatever you can/whatever tastes good....which is probably good advice...I just went with the attitude that if I can eat other foods that will give me the same nutrients that are easier to digest, why not?
                              - 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

                              Comment

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