Radiation+Lupron: wicked one-two punch

liver_puncher
liver_puncher Member Posts: 1 *
in Prostate Cancer #1

PCa diagnosed 9/2015, LRRP performed 11/2015 at MD Anderson in Houston (the mothership). 50+ lymph nodes removed, with three having cancerous cells. Post-op PSA <.1. Incontinent for about 1 year but then bone dry. Sep 2019 PSA increased to .2. In Feb 2020 doctor referred me to Radiology, where I underwent one year of Lupron ADP, followed by 35 radiation treatments commencing Jul 2020 and ending Aug 2020. The treatment occurred during COVID lockdowns. Experienced hot flashes, fatigue, body feminization from Lupron. Testosterone dropped to 9, but PSA returned to undetectable. Feb 2021, I became incontinent again and have remained so since. Testosterone eventually grew to high 400 range, but fatigue has remained even >3 years since Lupron ended. I have also become anemic and am seeing a hematology oncologist who attributes the condition to the radiation. I have also experienced intermittent lymphedema in left leg. I have consulted a pelvic floor physical therapist but I cannot get my body to do any of the prescribed exercises. She says pelvic floor is fried. Ironically, when first diagnosed I was fixated on preserving my sex life; now I just wish I could quit peeing on myself. Additionally, post-Lupron, my penis has “left the building” to the extent that my urinal leakage does not even make contact with the pad. I was 63 when this began; now 72.

Comments

  • Oldernow
    Oldernow Member Posts: 47 Member
    #2

    @liver_puncher

    I feel your pain. Lupron plus radiation has drastically changed my quality of life. I chose to use the name @Oldernow in these threads because, at 77, I truly feel "older now" as a result of the cancer treatment protocol.

    Fortunately I have NOT had incontinence at all but penile shrinkage has caused me to have many instances of missing the target when urinating. Lack of testosterone has weakened my body to the extent that I have recently finished my third round of physical therapy for knee, back and neck pain. Tomorrow I am scheduled to get a cortisone shot in my right knee to ease the pain. I NEVER had any of these issues before my cancer treatment.

    My PSA has stayed <.03 for about 18 months. My testosterone has increased slightly (now 54) from a low of 16. While the cancer remains in remission, the side affects are still very real. I agree with your original statement -

    Radiation+Lupron: wicked one-two punch

    Hoping I live long enough to recover some sense of normalcy.

    @Oldernow

  • Clevelandguy
    Clevelandguy Member Posts: 1,177 Member
    #3

    Hi,

    Feel for you two guys, I know why an ADT drug was prescribed but if I need one, boy I don’t know. Have not heard too many folks on this forum that have had very mild reactions to ADT. In my humble non medical opinion I just don’t know if the side effects are worth it. I know there are several ADT drugs on the market, anyone know which ones have the least side effects?

    Dave 3+4

  • Oldernow
    Oldernow Member Posts: 47 Member
    #4
    https://csn.cancer.org/discussion/comment/1719016#Comment_1719016

    Hi @Clevelandguy - Since the goal of ADT is to shut down testosterone production, I would expect similar issues no matter which form is used. It is the lack of testosterone that causes the problems.

  • Clevelandguy
    Clevelandguy Member Posts: 1,177 Member
    #5
    https://csn.cancer.org/discussion/comment/1719019#Comment_1719019

    Hi,

    Several survivors have reported less side effects with certain ADT drugs, just can’t remember which ones they were. As with most things side effects can very between individuals………

    Dave 3+4

  • Josephg
    Josephg Member Posts: 455 Member
    #6

    Yes, ADT makes substantial changes in our bodies, and some may be permanent. I know, because I've been on ADT twice, the most recent being for a period of 2 years.

    Two years after the end of my last 2 year ADT stint, I have man boobs, my Testosterone is stuck in the low 30's and may never go higher, I have zero penile sexual activity (other forms of sexual activity are possible and are used), I have zero stamina for extended physical activity, and I still have hot flashes.

    BUT, and this is IMPORTANT, my PSA remains UNDETECTABLE.

    When I started my PCa journey over a decade ago, I asked the initial question regarding my life expectance, if I did nothing. I was told that I would live approximately 1 decade, and the last 2 years would be miserable. As a result, I chose to fight the bandit, and started a patient relationship with a Medical Oncologist, who has remained with me and has been the leader of my medical team ever since.

    Well, 1 decade has passed, and I am still here. I write this here, because I realized early on that my life with PCa is in fact a journey and not a single occurrence. I also realized that with or without PCa, your life and its quality is what you make of it, and that does not change with PCa. I changed my focus from looking inward at myself and my issues, to looking outward at those in my life who care for me and the impact that my PCa and related attitude was having on them. When I accomplished this, my entire outlook on myself and my life changed for the positive, and I find more than acceptable quality of life in every day that I live.

    Getting back to the ADT topic, in my non-medical opinion, ADT is an integral part of the the portfolio of therapies available for fighting the bandit and prolonging life. Yes, ADT makes substantial changes in our bodies, and some may be permanent, but there is still ample quality of life available to those who choose to pursue it.

  • Marlon
    Marlon Member Posts: 110 Member
    edited November 20 #7

    When I was first diagnosed, I heard and read all theses statements about PCa being "one of the most treatable cancers", or how survival rates were 97-99% with early detection. Then there were the statements by men who went back to work 3 days after surgery, etc. What I didnt understand was that surviving would mean a significant change in life, and that there would be continuing things to deal with for the rest of my life at best. So, yes the bottom line is that you stop the cancer however you can, and not die from it.

  • On_A_Journey
    On_A_Journey Member Posts: 132 Member
    edited 2:17AM #8
    https://csn.cancer.org/discussion/comment/1719019#Comment_1719019

    Kind of.

    Surgical (orchiectomy) or chemical (Lupron etc.) castration does shut down T production, sure. Alternatively, there are anti-androgens (Casodex etc.) that still allow T to be produced, but don't allow it to latch onto and feed the cancerous cells. Thus, many of the typical side effects are negated. That's the way I understand it anyway.

    Castration is probably more effective which is why it has become the standard treatment, I guess. It seems like there are many countries where taking anti-androgens as a monotherapy is not an option. This is unfortunate in my opinion. Who cares if anti-androgens are slightly less effective if it doesn't diminish your quality of life compared to Lupron?

    A little on side effects - one of the most bothersome and prevalent ones is hot flashes. It is indirectly, not directly caused by not having testosterone on board anymore. They are caused by the commensurate loss of estrogen in your system due to aromatization. With castration, men effectively become like menopausal women, with the same symptoms. How to fix it? Easy! Get your doctor to prescribe estradiol patches. Who cares if you end up a bit fleshy on the chest, it could even be fun, lol.

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