On_A_Journey's journey

124ยป

Comments

  • swl1956
    swl1956 CSN Member Posts: 271 Member
    #62
    https://csn.cancer.org/discussion/comment/1723679#Comment_1723679

    Thanks for the link.

    I've always been a lean person, but after 7 months of ADT I'm beginning to feel some sensitivity and slight enlargement in the breast area. I don't consider myself a vain person, but I must admit I'm concerned about gynecomastia. I'm 6'-1" tall and weigh 165 lbs. A thin body with a big set of hooters would make me feel very self conscious. So, I guess I do have some ego issues. Anyhow, there are pharmaceuticals for this, but I'd rather not take them considering they come with side effects as well. I understand the breast tissue can be radiated to prevent gynecomastia. I'm going to ask the opinion of my radiologist at my next appointment. Estradiol patches might abate the ADT side effects for bone loss, and hot flashes. I'll be asking my medical oncologist about this as well. I'm a fan of Dr. Mark Scholz. In this video he discusses and compares these treatments. Sounds like he is in agreement with you concerning Estradiol patches.

    https://www.youtube.com/watch?v=U6V5pr-KAyQ
  • On_A_Journey
    On_A_Journey CSN Member Posts: 175 Member
    #63

    Now, that's my kind of doctor! ๐Ÿ˜€

    Thank you so much for posting that video @swl1956. My opinions about estrogen, either as a primary treatment or as a solution to the side effects of ADT, are just that - opinions. But I feel vindicated now after watching that.

  • Josephg
    Josephg CSN Member Posts: 538 Member
    #64

    I've sent a note to my Oncologist, asking for her opinion on Estradiol patches.

  • Josephg
    Josephg CSN Member Posts: 538 Member
    edited July 24 #65

    I received a reply from my Oncologist.

    "The Doctor reviewed your message. There is a slight concern with this medication affecting your cancer, but more importantly a thromboembolic risk. In addition, there are high rates of gynecomastia seen with this medication."

    I will discuss in greater detail at my next-person-to-person appointment on 8/27.

  • swl1956
    swl1956 CSN Member Posts: 271 Member
    #66
    https://csn.cancer.org/discussion/comment/1723719#Comment_1723719

    Please post how that conversation went after your appointment.

  • On_A_Journey
    On_A_Journey CSN Member Posts: 175 Member
    #67

    Today I received the results of my latest PSMA Pet scan. Again, all clear, but obviously another false negative.

    It was a good consultation. My wife and I had a lengthy and detailed discussion with my radio-oncologist about the results and what any future radiotherapy would consist of if I do end up with a positive result next time, and we came away better educated. He was also happy to make a referral for me to see a medical oncologist for the purpose of fully discussing ADT options with them in the meantime.

    That said, I am still on active surveillance with 3-monthly PSA blood tests and follow-up consultations for now. We will wait until my PSA reaches 2.0 (it is currently 1.0) before getting another scan, but if things go haywire then I'm happy to have the ADT card up my sleeve. My current doubling time is 19.3 months, but that figure is slowly coming in. Perhaps I'm looking at my next scan near the end of next year. Not sure I can wait that long - I do feel like a ticking time bomb at times, and I'm not sure about waiting much longer for anything to show up in case the bandit makes a run for it beyond anyone's control.

  • Josephg
    Josephg CSN Member Posts: 538 Member
    #68
    https://csn.cancer.org/discussion/comment/1723960#Comment_1723960

    Thank you for your update. I fully understand your discomfort, knowing that the Bandit is there, but not PET visible yet. Try to take solace in the fact that the Bandit is still so small that it is not yet PET visible.

  • Old Salt
    Old Salt CSN Member Posts: 1,686 Member
    #69

    Glad to read that you can continue with Active Surveillance.

  • swl1956
    swl1956 CSN Member Posts: 271 Member
    #70

    It is a worry, but you're staying on top of it. It will be interesting to hear the medical oncologist's recommendations.

  • On_A_Journey
    On_A_Journey CSN Member Posts: 175 Member
    edited August 9 #71

    Thanks guys.

    I've thought of a better way to describe why I'm wanting to see a medical oncologist even if I don't start ADT any time soon. It is to come up with an effective Plan B, just in case I need it.

  • On_A_Journey
    On_A_Journey CSN Member Posts: 175 Member
    #72

    My appointment with an M.O. has been made for this Thursday, the 21st. I've spent a fair bit of time refining a list of questions for her, and I believe that I will be able to quickly judge from her answers how open minded she is about treatment regimens that are considered a bit left field, whether as treatment itself or managing the expected side effects. Compared to the poisons normally administered for ADT, I'm adamant that such alternatives will result in a far better QOL for me during treatment, IF and when it happens.

    My wife and I have also come up with a trigger point for ADT. Trigger points, actually. (1) If my PSA doubling time remains greater than 12 months but my next PSMA PET scan, agreed for when my reading reaches 2.0, is negative again. (2) if my PSA doubling time drops to less than 12 months in the meantime. It is currently 19.3 months, but six months ago it was 28.1 months.

    My most rehearsed line is, my highest priority is to delay my cancer progression.

  • Old Salt
    Old Salt CSN Member Posts: 1,686 Member
    #73

    Thanks for the update. Several of us are following your case and interested in reading about your experience with the MO later this week.

  • On_A_Journey
    On_A_Journey CSN Member Posts: 175 Member
    edited August 22 #74

    The meeting with the MO went well. She is a lovely lady who listens intently, and we were able to convey all of our fears, hopes and ideas to her. We had two pages of questions prepared but I barely had to refer to them as the conversation naturally progressed through our concerns anyway.

    She agreed with the position that my Radiation Oncologist and I had come up with. As long as my doubling time stays north of 12 months, I will get another PSMA PET scan when my PSA reaches 2.0 and if it is positive, I will remain with my RO for treatment. If the scan is negative, I will jump on board the ADT train then, just as I would if my doubling time fell below 12 months in the meantime.

    I have a narrower research focus now. ADT will consist of the subcutaneously applied Gosarelin (marketed as Zoladex) or Leupralide (Eligard), or its intramuscular applied variant (Lucrin). I'm not a fan of any of them, but it will be my choice. Pleasingly, she was receptive to the idea of using estradiol patches to treat side effects if they occur and confirmed that it will be their domain to treat them, rather than me having to go through our family doctor who probably won't be so forthcoming. She also appreciated me showing her the article that I've linked around here recently, and in return, she showed me others that I was not previously aware of that also suggested similar concepts for dealing with side effects.

    We also spent some time talking about clinical trials. I was aware of the EMBARK trial, but I wasn't a candidate and I think it is closed now anyway. She called back today suggesting some others which I would be a candidate for if my doubling time does fall below 12 months - AMG509 which is an immunotherapy treatment, and ARASTEP which is comparing the results of ADT + Darolutamide (Nubequa) vs. ADT + placebo. I'll do my research, but my present belief is that immunotherapy is still a bit experimental, and the other trial requires 24 months of treatment. I personally don't think that my initial course of ADT will need to be that long.

    Following the appointment, we spoke with a specialist PCa nurse, who worked in the radiation department when I was undergoing my salvage radiation a decade ago! She was aware that I was one of her patients back then and I vaguely remembered her too. We engaged in some banter and it was like being amongst old friends. What ensued was a valuable discussion; her role was to explain the mechanics of treatment and to offer support services if I require them. I'm glad that we stayed behind for this optional meeting.

    Although I only live in a country town amongst a cluster of others a couple of hours from our big capital city, luckily I'm just a few miles from a major regional hospital with a dedicated cancer care facility, affiliated with one of the big city hospitals. All in all, I'm extremely satisfied with my team. My RO sent very comprehensive notes, including my full PSA history since surgery in 2015, to my MO as part of the referral. My MO listened to us; our appointment ran for almost an hour! It was also great to touch base with the nurse again.

    I doubt I'll reach either of the trigger points for ADT until deep into next year, if at all, but when I do, I'll feel more ready than ever. ๐Ÿ™‚

  • Josephg
    Josephg CSN Member Posts: 538 Member
    #75
    https://csn.cancer.org/discussion/comment/1724217#Comment_1724217

    Glad to read that you had an extensive consultation with a MO. You are in good hands now long term for your continuing PCa journey. I see my MO next week for my quarterly consult and blood draw.

  • Josephg
    Josephg CSN Member Posts: 538 Member
    #76

    I committed to discussing with my Medical Oncologist the use of Estradiol patches to reduce the severity of ADT produced hot flashes, and that discussion took place yesterday.

    First of all, my Cancer Center was involved in the clinical trials for Estradiol Therapy, so they have first hand experience with it. This therapy does work well in many, but not all, patients to blunt/reduce the severity of hot flashes, but it does not eliminate them completely. There is no associated risk for 'waking' up the sleeping PCa cells associated with this therapy, which was my biggest concern/question/fear.

    My MO does not recommend this treatment, unless it is the only option left after trying existing alternate available options. The scenario where my MO would recommend this therapy would be in the case where the hot flashes are so disturbing and/or debilitating that the patient was fearful of losing their job or marriage relationship, and/or is experiencing serious psychological issues associated with the hot flashes. In other words, MAJOR quality of life issues.

    My MO reminded me that the final choice of therapies is mine alone, and that if I wanted this therapy, a script would be issued. I reminded my MO that I placed my life in their hands (13 years ago and still counting), and that if my MO is not comfortable with a particular therapy or procedure, that's all the information needed for me need to say, 'No thank you'.

    My MO's reasoning is quite simple. There is a very serious potential side effect associated with this therapy โ†’ Thrombosis. Clinical studies showed that there is a risk of blood clots forming with the use of this therapy, ranging from small stationary clots to traveling clots resulting in an embolism leading to death. The statistics show that there is a 10% chance of having a blood clot while on this therapy, and a 1% chance of having an embolism resulting in death.

    My MO advised me that I've been in PCa remission for 4+ years, have eliminated my Afib with a cardio ablation procedure, have lost 17 lbs. and counting in weight through change of eating/drinking habits, and have resumed a consistent exercise regimen. My MO then asked, with all of these positive things presently occurring in your life, are your hot flashes debilitating enough to consider starting a therapy that has a 10% chance of incurring a blood clot and a 1% chance of having an embolism resulting in death?

    For me in my current PCa journey, the answer was obvious.

  • On_A_Journey
    On_A_Journey CSN Member Posts: 175 Member
    edited August 29 #77

    @Josephg, kudos for making your own thorough investigation with your MO regarding estradiol. What you wrote is very valuable information.

    Please remember that my bullish assessment of using estradiol patches to alleviate hot flashes in the main, but also many of the other side effects typically blamed on ADT, is only theoretical from my personal position as someone not on ADT yet. That, and my personal lack of hang-up with its own known side effects, that certain other men might find harder to deal with.

    I'm also replying to question your MO's opinion about thrombosis or other cardiovascular issues associated with using estradiol patches. Through my research, I'm pretty sure that those issues were real back in the day when it was taken orally or injected, but not nowadays when taken transdermally. If it was still an issue, why are many millions of women all around the world being allowed to use the patches to alleviate their vasomotor symptoms following menopause? We all have the same hearts and veins regardless of gender, and hot flashes for the same reason! When is the last time anyone here has heard of a menopausal woman having a heart attack because of their HRT?

    Crickets!

  • Josephg
    Josephg CSN Member Posts: 538 Member
    edited August 31 #78
    https://csn.cancer.org/discussion/comment/1724318#Comment_1724318

    Hey, folks asked me to relate my conversation regarding this therapy with my MO, and I have done that. The clinical trials were for men using this therapy, and there is no mention of women in this discussion.

    In your research of research women using this therapy, you undoubtedly found that there is a 5 year limitation on the use of this therapy for women, as after that, the risk of breast cancer increases significantly.

    Do what you want, with this content, as each PCa survivor makes their own decisions. I have no plans for further discussion with my MO on this topic.

  • Old Salt
    Old Salt CSN Member Posts: 1,686 Member
    #79

    Good thread. One often sees estradiol patches recommended on this and another forum that I follow. The potential side effects are rarely mentioned.

    Nevertheless, each patient can decide whether the risk is acceptable for him.

Discussion Boards