I've been dealing with the scourge going on eight years now. I got a 10-15 year prognosis. I feel good, and I will out live this critter. At least past the 15 mark.
I'm on Lupron, Zytiga w/prednisone, and Xgeva. Pretty lazy/weak, but kicking it.
Today, I got pretty aggravated. I've been on ADT for the whole time, and my wife asked me about being on estrogen, I said I wasn't, then a minute later, her friend asked me the same thing. I am losing it. How many times do I have to tell them to read up on it? What can I do to make them understand?
My wife, who refers to herself as my caretaker, hasn't a clue.
Frank
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Frankenski
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Her lack of educating herself probably reflects how unconcerned she is and how well you have it under control. Great! My wife knows more than they docs sometimes - because she worries! Im looking forward to when she relaxes like your wife.
I'm sorry you felt aggravated by your wife not knowing what's going on. I can say, as a wife, I'm pretty informed on my husband's cancer treatments, his PSA levels, the prescriptions he's taking and I often make his doctor's appointments for him. I try to be informed of everything that happens. It's still a lot I have to learn and a lots of terms to understand, especially when English is my second language. We all take a different approach to the situation in different ways I guess. But just like BigM62 said we as wifes have to be more relaxed for our own sake, but we still have a bit of knowledge. I hope the best to you.
Even wives as caretakers do not live with the disease with the same intimacy and constancy as we do. Maybe that is a good thing, even if it is frustrating at times. Caretakers have only so much to give, and they do have their own fears as well.
Let me make a comment on estrogen as well that might be helpful to you. I have taken estradiol for four years along with Lupron and Zytiga/prednisone. The estradiol patch (Alora/.1mg per day) greatly reduced the hot flashes, mood swings, and lethargy that ADT causes for me.
Estrogen is also a key ingredient in strengthening your bones. I have used Xgeva, but estradiol and a good calcium supplement (New Chapter Bone Strength) have been more effective at protecting me from spreading bone mets.
My bone mets did spread with Xgeva, from two to six in a year. They stopped spreading with estradiol. And a year later with Xofigo added, most of my bone mets completely healed.
Perhaps estradiol can lessen the side effects of ADT for you right away, and offer you equal or better protection from bone mets as you fight this disease.
My best to you, brother. You have clearly fought well. That’s what we do. And when we are lucky enough to have a women in the fight with us, they cannot share everything we know and experience.
Ha..ha..ha.. I’m married also. The main thing is that we have love. Unless you have APC,is hard to fathom the complications for someone not in our shoes. They gave me 39 months originally . I’m at 31 months from that dx . No signs for the past. 1 1/2 yrs. Hope that I can follow your length of success on dealing with APC.
Yes. Frustrating. A component of my profession had been “research” for clinical situations. Upon being diagnosed with prostate cancer, my research proclivity went into high gear. So I understand the latest and changing concepts for the cancer’s affect, and the concepts for treating with the latest protocols and medications.
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That being said. My doctors (urologists and oncologist) and I are on the same page in the same book with good and productive communication.
But ... so many folks “know more than me” with their lack of knowledge, giving not only useless suggestions, but years out-of-date information ... and are often disappointed when their “treatment suggestions” are not followed. (It’s hard to listen to shit.!) Then should I have a reoccurrence or a cancer progression, I’m sure that it would be viewed subconsciously my fault for not following their advise.
In may ways that absolves them in their relationship to me and this cancer (when they really don’t know what to say or what to do) ... it becomes my fault, and through “I told you so” they are released from levels of compassion and caring. Almost like it is for lung cancer patients who have been heavy smokers. “I told you so!”
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Pick and choose your support network carefully. Draw boundaries regarding your research information, your doctors, what you know, how you feel, and and who you trust (eliminating the “I-told-you-so” folks who don’t know what the he’ll is going on, or what they are talking about.)
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But don’t ruin your social relationships, friendships, and your place in your community:
• Just listen ... you don’t need to debate, or defend.
• Response: “That’s interesting.”
• Change topics of interactions to other situations: your pets, the weather, the damn North Koreans, etc.
• And pray: “Help me deal with these morons.” ... and “Live and thrive in the comfort and support of those who care and hold me up.”
• Be bold (this is difficult and can be awkward), tell, communicate to the folks what you need in support, what you don’t need, and what is not helpful.
It depends on the wife, I know things. She does care, don't get me wrong, but there's a strict limit, as I see it, as to her definition of "care". I read here where wives bend over backwards for their man, when others, not so much.
Maybe it is her way of dealing with it. I tend to get obsessed with the disease and find I need to back off as my husband's Prostate Cancer has become my new hobby. With researching supplements, nutrition and medications.. juicing 50lbs of produce a week and raising the children.. I get a little exhausted. I hope you feel better! Sending hugs and prayers to you and your wife!
Hi Frank, I've been on Lupron six years and my PSA is 0.00 for 6 years! But I have been feeling tired and lazy lately. I noticed on my blood tests my B12 was low, my ferritin level (iron) was normal and my Red blood count was down to 10 again. I bought 5,000 mg B12 at the drug store and I have felt much better. I have more energy awaken refreshed now. I will see if my RBC is closer to normal in January. Good luck.
My first doctor gave me 5 to 10 years when I had surgery. That was 25 years ago. I'm still doing OK. I think both of you need do your due diligence research. Your doctor has you on a lot of drugs all at once. I don't know a lot about your specific diagnoses but if you have not had any metastatic incidences in your bones why are you on xgeva. Not of these drugs are cures but they can extend you life. Use them sparingly.
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