First MO Appointment After Treatment Start

fullmoon50
fullmoon50 Member Posts: 40
in Prostate Cancer #1

Hello to all. After the flurry of activity and anxiety following my husband’s PCa dx in December 2017, it now seems like “not much” is happening. Of course there’s a lot happening but as the wife, my initial role of research and dealing with insurance issues has been fulfilled. It feels like a lot of waiting now.

Paul has now been on Casodex for 3 months and will get his 2nd three month Lupron shot in about 2 weeks. Amazingly, he has had no side effects at all from ADT. I am both grateful and wondering why. Does that mean anything about its efficacy? He has received the first 5 of 40 radiation treatments. On June 7, he has his next appointment with the medical oncologist. What questions should we be asking at this point? Are there any blood tests that he should be getting before that appointment so we can discuss the results? Part of my concern is that we’ve heard through the grapevine that this MO is about to go on maternity leave. We like and trust her and want to benefit as much as we can before her leave. 

So any questions we should be asking? Any tests that should be scheduled? Any suggestions on a smooth transition to another MO? We know there’s a report from genomics of the biopsy but don’t have those results yet. The RO told us there’s 2 mutations that can be clinically addressed. He shared that much but said it’s not his wheelhouse and the MO will talk to us about that. Do we even need to think about that now or is that another weapon to store until it’s needed?

As always, my thanks to all of you for your help. I’ve been on the board every day and following your stories. You are all brave - both patients and caregivers. Mary

Comments

  • RobLee
    RobLee Member Posts: 269 Member
    #2
    No SE's from ADT ???

    Hi Mary, and sorry if this has already been discussed. But you mention your husband has experienced NO side effects from his Lupron injections. I do remember that it was a few weeks before hot flashes started, and as time progressed, more and more SE's became apparent. But I'm wondering how he could be so fortunate to not have any side effects!

    I've looked here for a bio or a blog where you might have documented some of his stats, but I'm guessing since he is on ADT2 and you have a MO involved, that he may  be stage IV or have LNI... something more advanced. My RO put me straight onto Lupron w/o Casodex as he flelt the Lupron flare was apparently not an issue. And when I asked if I should get an MO involved he simply said no. So I don't know if your questions and my level of experience are at the same level.

    As for the Lurpon injection, I suppose there are a few things that could interfere with its effectiveness. I think I recall reading that for some guys it just doesn't work out, but usually that's those who had an allergic reaction and a different agent had to be used. And I suppose there could have been some mechanical fault in the depot forming property of the injection. But I would think that your husband should experience something... if nothing else, perhaps some relief from bone mets if not new bone and muscle pain... hot flashes, brain fog, insomnia, hair loss... something.

    His doctor should be checking his testosterone level to determine that the ADT is effectively lowering his PSA and keeping his T-level below 30. If it isn't, then it isn't working.

  • fullmoon50
    fullmoon50 Member Posts: 40
    #3
    RobLee said:

    No SE's from ADT ???

    Hi Mary, and sorry if this has already been discussed. But you mention your husband has experienced NO side effects from his Lupron injections. I do remember that it was a few weeks before hot flashes started, and as time progressed, more and more SE's became apparent. But I'm wondering how he could be so fortunate to not have any side effects!

    I've looked here for a bio or a blog where you might have documented some of his stats, but I'm guessing since he is on ADT2 and you have a MO involved, that he may  be stage IV or have LNI... something more advanced. My RO put me straight onto Lupron w/o Casodex as he flelt the Lupron flare was apparently not an issue. And when I asked if I should get an MO involved he simply said no. So I don't know if your questions and my level of experience are at the same level.

    As for the Lurpon injection, I suppose there are a few things that could interfere with its effectiveness. I think I recall reading that for some guys it just doesn't work out, but usually that's those who had an allergic reaction and a different agent had to be used. And I suppose there could have been some mechanical fault in the depot forming property of the injection. But I would think that your husband should experience something... if nothing else, perhaps some relief from bone mets if not new bone and muscle pain... hot flashes, brain fog, insomnia, hair loss... something.

    His doctor should be checking his testosterone level to determine that the ADT is effectively lowering his PSA and keeping his T-level below 30. If it isn't, then it isn't working.

    No SE’s

    Hi, Rob. He says he feels nothing different at all from ADT. He was diagnosed 12/2017 with Gleason 10 and PSA 34. 11 cores were retrieved on biopsy and all were cancerous with volume between 40-80%. After 2 months of insurance snafus, he went to Moores Cancer Center at UC-San Diego. Scans (CT, bone scan) show no bone mets and 3 enlarged nodes near prostate. Moores calls it Stage 4 locally advanced PCa. 

    T-free before any treatment was 51, so low already. Started Casodex March 6. On March 15,had first Lupron shot. My observation is that his cognition is slightly impaired-a bit fuzzy for a bright, verbal man. He says he doesn’t notice it and is functioning well at work. He’s had fatigue issues for a long time but insists it’s not any worse. He’s had no hot flashes, no hair loss, no insomnia. I’ve read everyone’s suggestions on what helps them during ADT and was concerned since he is not compliant with any health related lifestyle changes. He has Type 2 diabetes and hypertension. Honestly, I don’t know what to think. It seems that T at least should be checked, right? Since he’s going every day for radiation, do you think there’s value in having that done prior to MO appointment? 

    Does this update give you any ideas on what we should be asking/expecting of the MO? Thanks for your reply. Mary

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #4
    Inquire if he follows the present protocol

    I have nothing to say that would be of help. I think that the new doctor will try continuing the same protocol but you can request the means for contacting the present doctor in case you want to confirm any change suggested by the newer physician in future.

    Your story is here; https://csn.cancer.org/comment/1629001#comment-1629001

    Best,

    VG

     

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