Announcement Announcement Module
Collapse
No announcement yet.
Testosterone Replacement Post Chemo Page Title Module
Move Remove Collapse
X
Conversation Detail Module
Collapse
  • Filter
  • Time
  • Show
Clear All
new posts

  • Testosterone Replacement Post Chemo

    Hi all

    My husband (age 51) just completed 3X BEP on 12/29/10 (see my signature below for specifics). He didn't have an I/O as the cancer was primary to the chest.

    We asked to test T, FSH and LH because of a spike in his B-hCG and wanted to make sure the B-hCG wasn't due to an interaction of LH because of low T. Ironically, the retest showed the B-hCG was normal, but did reveal low T and high FSH (see below, with ranges):

    • Testosterone = 136 [175-781 ng/dL]
    • FSH = 20.1 [2.5-17.7 mIU/mL]
    • LH = 4.3 [1.4-7.7 mIU/mL]

    So my questions (which are probably really, really dumb):

    • How low really is his T?
    • Will the T level increase naturally as he recovers from chemo?
    • Do men who are age 50+ replace the T?
    • Is it difficult to regulate T on replacement?


    I wish he had had the T tested prior to chemo, as he doesn't have any baseline for normal. I suspect that he was low in T prior to chemo - I just don't think as low as he is now. He has no plan to initiate any type of replacement treatment right now as he is recovering from chemo. I'm just looking for insight from men around the same age group who have had low T due to TC.
    Heidi

    Husband - age 51
    10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; -HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
    11/1/10 4X BEP
    12/7/10 End Cycle 2 - -HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
    2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
    6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
    Surveillance since 6/11

  • #2
    With regard to the lab range, his total T is indeed very low. To what extent it may recover in the weeks and months ahead after chemo is difficult to say. Some men seem to report improvement but the fact that he doesn't know how his levels were before being diagnosed with TC make it difficult to say whether this pre-existed chemo.

    Did you have his free testosterone (arguably more pertinent) checked as well? Hormone panels really should include not only FSH, LH, and total T but also, at a minimum free T and E2 as well.

    As regards age, there is a growing (albeit slow) awareness that many men, as they age, do experience a particularly fast drop-off in testosterone production. Some gradual reduction over a man's lifespan as he ages is completely to be expected. But some men experience a much faster drop-off such that they begin experiencing premature bone weakness, drop-off in libido, irritability, difficulty concentrating, lack of motivation, muscle weakness, etc. So it's not out of the ordinary, even among men who have never experienced TC, to have to seek the help of an endocrinologist. Furthermore, many men younger than fifty have experienced the symptoms of prematurely low testosterone. While there is still some resistance (and lack of clinical knowledge) in the endocrinology community, a good endocrinologist with abundant experience in male hormones, will know to do proper testing, dosing, and follow up. That your husband has been treated for TC simply means that it may take some time after his chemo for symptoms typically associated with low testosterone to improve.

    As for regulation, there are a few factors to consider: First is that of delivery system. Here in the US, choices are somewhat more limited than elsewhere, with the leading forms being short-term (every one or two weeks) intramuscular injections, daily topical gels, or multi-month implanted pellets, this last one being the least commonly seen. The good thing at the injectables is that dosing can be adjusted very easily. The advantage of gels, on the other hand, is that they assure the user of fairly consistent day-to-day serum testosterone levels. However, gels come in finite dosing amounts (although AndroGel is available in a pump, which is more flexible for adjusting dosage). Finally, while not always easy, it is possible that he may have access to a doctor willing to prescribe and to a pharmacy will to mix up a compounded testosterone topical cream. This would be much cheaper than the gels (both of which are still under patent) and can be formulated with a higher concentration.

    In any of these cases, dosing may have to be adjusted after treatment begins. Typically, an endocrinologist will ask for a complete hormone panel a few weeks after beginning treatment to gauge response. However, it's important not to overemphasize the actual lab result. Your husband, assuming he starts a TRT regimen, may wish to keep a written log of how he is feeling (mood, concentration, libido, etc.) to see how he is responding. While there's the possibility of some placebo effect, he really should notice an improvement anywhere between a few days to a couple of weeks after starting treatment. Things like muscle mass and bone density take longer to respond.

    In any event, your husband will want to discuss how he feels and his lab results with the prescribing endo a few weeks after starting treatment. The frequency and dosing of injectables can be easily adjusted. On the gel side, the number of pumps (assuming he would be using the AndroGel pump) can be adjusted or, if he's using the foil packets, the number can be adjusted. AndroGel comes in 5 and 2.5mg dosing packets. Testogel, the leading competitor in the US, comes in 5mg dosing packets.

    Getting the delivery system and dosing right for the long run can take some trial and error. Some men have started on one only to find that they needed to move to another regimen after a few months. I, on the other hand, have been on the same regimen for almost three years. Everyone's experience will be different and every man will respond to treatment differently.

    Alex
    TC1: 1996, right orchiectomy, seminoma stage I 3.5 cm mass, radiation therapy (peri-aortic & pelvic 27.3 Gy)
    TC2: 2008, left orchiectomy, seminoma stage IA 5 cm mass, left & right prostheses, AndroGel TRT, surveillance at MSKCC

    Comment


    • #3
      So much great info your post should be a sticky!

      Alex,

      This is an amazingly thorough answer with exactly the type of info I was looking for. It should be a sticky

      I have a thyroid problem, and it seems that treating low T is similar to treating hypothyroidism. Lots of testing, and a bit of trial and error until you get the drug and dosage right. Good to know about the free T test. He did not have that done. Next time we'll ask for it.

      Question for you: are you happy that you are being supplemented? Do you feel it has made a measurable difference to you?

      Thanks again for your post - you really answered my questions.
      Heidi

      Husband - age 51
      10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; -HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
      11/1/10 4X BEP
      12/7/10 End Cycle 2 - -HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
      2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
      6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
      Surveillance since 6/11

      Comment


      • #4
        I'm overjoyed to be able to help in any way, no matter how small. I definitely agree that male hormone deficiency is, in that respect, similar to getting to the bottom of thyroid disorders. It can be frustrating waiting on results. I'd just add, though, that at least thyroid problems are broadly understood among most endocrinologists. Male hormones, however, still seem to be a mystery to many endos. One document, albeit a bit dated, that I'd recommend is the American Association of Clinical Endocrinologists Hypogonadism Guidelines (http://www.aace.com/pub/pdf/guidelines/hypogonadism.pdf). Any endocrinologist in the United States should, at a minimum, be familiar with this document. You'll find, however, that many aren't even that well informed and many more don't go beyond it. A further complication is that, thanks in part to all the steroid abuse among many athletes, testosterone is a highly controlled form of medication. It can only be dosed in discrete quantities, cannot (at least in the case of the gels) have automatic refills, thus requiring new scripts, and in many jurisdictions and with certain insurers cannot be filled for more than one month other than through mail order. And once on TRT, it really is a lifetime regimen.

        Having said that, once a man is settled on the right dosage, he'll feel like he has a whole new life, at least to judge from what many people report. In my own case, I had absolutely no choice. Having been diagnosed with a second primary TC, I would have been left with effectively little to no testosterone production without exogenous replacement. In that respect, cases like mine (bilateral TC) are very straightforward: we absolutely need TRT and no doctor can argue otherwise. One final note: hormone replacement is just that, replacement, as opposed to supplementation. Depending on the particulars of a case, a man's endogenous production of testosterone can be expected to effectively shut down in the presence of good external dosing.
        Last edited by Aegletes; 01-07-11, 05:12 PM.
        TC1: 1996, right orchiectomy, seminoma stage I 3.5 cm mass, radiation therapy (peri-aortic & pelvic 27.3 Gy)
        TC2: 2008, left orchiectomy, seminoma stage IA 5 cm mass, left & right prostheses, AndroGel TRT, surveillance at MSKCC

        Comment


        • #5
          Well, you have certainly helped us! I have indeed looked at that document, and that was how I knew at least the questions to ask here

          I know that when I finally got the right dose of thyroid replacement hormone, it felt like zing! Suddenly, I wasn't half asleep anymore. I imagine that getting the right T supplementation is similar.

          My husband is being treated at Duke, and it would make sense to keep the treatment all in the same arena. There is one doctor, Dr. Thomas Weber, who seems to work with male hormone replacement. We can start with him, and see how it goes. But first, we have to get through the first PET scan, and make sure we are done with cancer. Then, we'll work on the T.

          Baby steps to recovery.
          Heidi

          Husband - age 51
          10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; -HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
          11/1/10 4X BEP
          12/7/10 End Cycle 2 - -HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
          2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
          6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
          Surveillance since 6/11

          Comment


          • #6
            Finding a doctor experienced in male hormones is half the battle so it sounds like you're already off to a good start. And yes, I recall a lot of guys reporting how good they felt after a couple of weeks on TRT. That initial improvement might subside in men who had their own production as the body shuts its own production down, which is why a follow up round of lab tests and a doctor visit to reevaluate the dosage after a few weeks is important. I'm confident your husband will be in great shape on the hormone therapy side of things once you get the cancer treatment behind you both.
            TC1: 1996, right orchiectomy, seminoma stage I 3.5 cm mass, radiation therapy (peri-aortic & pelvic 27.3 Gy)
            TC2: 2008, left orchiectomy, seminoma stage IA 5 cm mass, left & right prostheses, AndroGel TRT, surveillance at MSKCC

            Comment


            • #7
              Thank you for everything - it is GREATLY appreciated!
              Heidi

              Husband - age 51
              10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; -HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
              11/1/10 4X BEP
              12/7/10 End Cycle 2 - -HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
              2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
              6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
              Surveillance since 6/11

              Comment


              • #8
                Originally posted by Aegletes View Post
                Did you have his free testosterone (arguably more pertinent) checked as well?
                There is little interest in Free T from my team - the Endo, Uro, GPand have only looked at this a few times - and have then not paid this is related to having zero T production ability.

                Agree that the biggest challange is Finding a person that has an interest and belief in T replacement - you almost need to interview a doctor on their opinion before wasting too much time.

                Cheers

                Kiwi
                >>>>>>>>>
                TC1: May 2001 / Right orchiectomy / seminoma stage 1 / Radiation
                TC2: July 2008 / Left orchiectomy / seminoma stage 1 / X2 Prostheses / Reandron (long term Testosterone injections)

                Comment


                • #9
                  I've got to find a good doctor, my uro has only run one T test in the last year (low normal results) & does not seem that interested in anything beyond that.

                  Also, I went two weeks after my 2nd IO before he even put me on TRT. Lots of strange things happend to me during those weeks....

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

                  Comment


                  • #10
                    I'm sorry to say you're not the first TC 2x guy here to experience that kind of slowness to get put on TRT, Dave. It's unconscionable that any man having a second primary TC should be made to wait for treatment that he will need. In fact, depending on the particular circumstances of the patient's case, he may already be experiencing much diminished endogenous testosterone even before the IO. I was fortunate, I suppose, that I was already on TRT for a few months before my second IO so I never faced the delay you experienced. A lot of doctors are still very ignorant of the effects of low or nonexistent testosterone. The mood swings and lack of motivation alone are terrible.
                    TC1: 1996, right orchiectomy, seminoma stage I 3.5 cm mass, radiation therapy (peri-aortic & pelvic 27.3 Gy)
                    TC2: 2008, left orchiectomy, seminoma stage IA 5 cm mass, left & right prostheses, AndroGel TRT, surveillance at MSKCC

                    Comment


                    • #11
                      Originally posted by Aegletes View Post
                      The mood swings and lack of motivation alone are terrible.
                      Honestly, this sounds a lot like severe PMS.
                      Heidi

                      Husband - age 51
                      10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; -HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
                      11/1/10 4X BEP
                      12/7/10 End Cycle 2 - -HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
                      2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
                      6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
                      Surveillance since 6/11

                      Comment


                      • #12
                        I recall describing how I felt when I was first diagnosed with hypogonadism, just a few months before my second TC (I doubt it was a coincidence), to some women and they all said it sounded like PMS. There were days I would just sit in my office at work and not feel like doing anything at all, just staring at the PC. It was bad.
                        TC1: 1996, right orchiectomy, seminoma stage I 3.5 cm mass, radiation therapy (peri-aortic & pelvic 27.3 Gy)
                        TC2: 2008, left orchiectomy, seminoma stage IA 5 cm mass, left & right prostheses, AndroGel TRT, surveillance at MSKCC

                        Comment


                        • #13
                          Either way, hormones (or lack thereof) are powerful things.
                          Do you get your thyroid checked, too? Just curious...
                          Heidi

                          Husband - age 51
                          10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; -HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
                          11/1/10 4X BEP
                          12/7/10 End Cycle 2 - -HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
                          2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
                          6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
                          Surveillance since 6/11

                          Comment


                          • #14
                            There were days I would just sit in my office at work and not feel like doing anything at all, just staring at the PC.

                            While I'm sorry to hear you had those kind of days, I am glad to know that I'm not alone. That describes exactly how I was feeling last year - just sitting there in front of the PC not accomplishing a single thing.

                            A lot of doctors are still very ignorant of the effects of low or nonexistent testosterone.

                            This is so incredibly true. When I told my internist of how "unmotivated" I felt, he said my T levels were normal and prescribed me an anti-depressant instead.

                            Comment


                            • #15
                              85Wahoo -

                              How low was your testosterone when you started replacement? And I take it replacement has made a difference?
                              Heidi

                              Husband - age 51
                              10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; -HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
                              11/1/10 4X BEP
                              12/7/10 End Cycle 2 - -HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
                              2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
                              6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
                              Surveillance since 6/11

                              Comment

                              Working...
                              X