This is my first post about my ex-hubby, DC, who was diagnosed in August. Had catheter for 4 weeks with blood & clots in urine. Is urinating on his own every 40 mins but very slow stream & low volume. He had his 1st shot of Lupron (3 mo) the beginning of Sept and is now on Zytiga 250mg & Pred 5mg. Having low energy & fatigue some days, other days seem normal. Had bad hot flashes for a couple weeks but seems to have gone away for the most part. Has had a really bad back (stenosis) for 20 years so walking for any distance is difficult. Muscle loss is obvious. Was 265lbs & now 237lbs but hasn’t had any fast food or alcohol at all since diag. Look great, feels icky sometimes. MO says his prostate is quite large, CT scan showed LN Mets in pelvic area and just had his bone scan yesterday. Last PSA was 65, all else normal. Question is…we go see his MO next Tuesday 10/26 to get the results & discuss treatment plan based on those. What questions should we ask his Dr if scan is negative? And what questions should we ask if his scan is positive? New to this but have been reading this site for over a month now and am learning that y’all have great advice and knowledge.
Would appreciate any input and advice you may have. Thanks in advance!!
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jcoil
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I think he has established a good treatment plan and I don't think the scan results will alter that. With an initial PSA of 243, the bone scan is likely to be positive, but successful treatment can stop the advance and even allow the mets to heal somewhat. It sounds like his treatment has been working so far with the reduction of his PSA from 243 to 65. Hopefully it will continue to go down.
One thing I would discuss is having the addition of bone-strenthening meds such as Zometa or Xgeva prescribed.
Here's an article that discusses this and other information about treating prostate cancer that has spread to the bones.
Great link! Thanks gregg57…I’m hoping he is on the right treatment and agree that is sounds like it’s working. We have Kaiser so we are kind of locked in to a medical facility, however, his MO is also a doctor at The City of Hope in Duarte, Ca and he can be treated at CoH if needed since Kaiser will cover treatment there as well. I see an oncologist as well so out lives are pretty dependent on great doctors!! Thank you for your reply😊
Trajectory of his PSA is clear indication that his current treatment is working. Zytiga 250 mg along with high fat food works equally well to Zytiga 1000 mg empty stomach. Research studies have proven it.Before allowing MO to start him on bone infusion medicines, ask MO to take a baseline DEXA bone density scan. Also, ask for serum testosterone level which most MO forget to do. This blood test should be re checked to see how low his T has gone...an indication of effectiveness of current treatment.
With right meds, anticancer foods, regular physical activity and relaxed mind.. lymph node and/or bone mets can disappear fully. There are hundreds of men on this site who do not have any visible mets now.
Hi LearnAll,By accident he actually did get a DEXA density scan done. He was supposed to get the bone scan but they gave him the wrong test…turned out for the best. His DEX showed “low bone density” but with no metabolic work-up recommended, just calcium 1200mg/day & Vit D 1000 iu/day, he’s taking those. His testosterone level was 23 on 9/29 and Alk Phos was 84. Is the serum testosterone blood test different than the one they initially did?
Thank you so much for your response & advise. I have it written down and will ask the doctor.
Really needs a stronger bone protecting regimen than just Calcium an D3. Even if there are no bone mets identified yet, either denosumab or zolendronate injections are much more effective, even if his delay scan had been normal. They make bone less susceptible to metastatic invasion it appears. So this is beneficial whether Mets are evident yet or not. My personal choice is denosumab, starting with the more intensive monthly Xgeva dosing then switching to the Prolia dosing every six months. Very easy. The concise reply by Tall Allen is spot on (as usual). If there are mets seen outside of the pelvis, I then adding docetaxel to the ADT plus abiraterone at diagnosis is the most effective regimen. The docetaxel will be done in six cycles over 15 weeks. Hard but do-able.
If no mets seen beyond pelvic lymph nodes then the full pelvic radiation plus short term ADT is the best known way to go. Get a referral to the best available Radiation Oncologist while you are sorting everything out so there will be no delay. May also want to arrange a PSMA PET scan for the most sensitive technology for evaluation of his status now.
Welcome to you both. We are here for you and know how challenging it is for you both. Paul
Hi Paul,I will suggest the regimen as stated and I will see about the PSMA PET scan. God willing, his scan is negative, I would like to get ahead of it as much as we can.
Thank you for the warm welcome. You all are my source for information and mental stability. I do appreciate you.
Saying "low bone density" does not tell much. You put data into fracture risk calculator of "American Bone Health" website and then you will get accurate condition of his bones. I just used the calculator ,mine came in Green area which is good. Daily use of turmeric and resistance exercises build bones back.
This was reassuring for me. After entering all my data I won't get into the yellow until approx 82.5 years of age. It supports what my MO told me. Prednisone seems to be the real culprit.
He seems to be doing well on the current treatment. Stay with it and watch those scan. The first few months are difficult but there is light at the end of the tunnel.
Thank you so much for that link. I’m going to read it backwards & forwards! Great info to refer back to and charts are very useful for me. Much appreciated!
Hello. Your post on blood clots and catheter caught my eye as my partner died after an operation to shrink his prostate prior to cancer treatment. He had LOTS of blood clots, which blocked the catheter such that the doctor had to install a larger one. I'm writing in his account to seek answers as your post popped into his email. This is a controversial question, but I'm investigating all possibilities: Is your husband vaccinated and, if so, which COVID vaccine? I'm learning about blood clot complications with vaccines as the doctors gave me suspect cause of death. I'm told my partner died of cardiac arrest, that his arteries were clogged 90/90/100% and have been building up for many years, and that the load of blood clots in his BLADDER they were flushing with over 60 liters of saline after the surgery on his prostate COULD NOT travel to his heart. Really? Is it possible to be alive and walking prior to surgery with arteries that clogged? Can blood clots travel anywhere in the body? I'm told that, before he died, his blood pressure shot up to about 215 (normal was 140's to 170's due to composition and as a former athlete) and then went really low. Thoughts?
Oh, one more thing to consider: since he is very bothered by the hot flashes and fatigue of very low testosterone from the ADT, ( as am I and so many others) there are several possibilities as many here will tell you. But for me the most wonderful solution to ADT side effects is an estradiol patch. Completely stopped hot flashes and improved fatigue and brain-fog substantially while also helping to protect bone mineralization. Either a 0.10 or 0.25 mg per 24hr dose patch changed out twice weekly. Definitely worth a trial. Does not affect cardiovascular risk like oral estrogens do.
Oh my goodness!!!! Thank you so much for that recommendation! I will definitely bring it up to the MO. He goes back to work on Monday, Nov 1 and he’s really worried about the side effects. He also has Mitral Valve Prolapse so he does have to be careful with what he takes. I really think that will be the answer….Thanks again!
What is estradiol? By the name I would guess it is an estrogen patch. Why would an estrogen patch be a help in curbing side effects from PC treatments? If it can help me and my hot flashes and mental fog, I will ask my Oncologist. Anything for a better quality of life.
MateoBeaches recommendation to use the Estradiol patches has been documented by numerous doctors and studies. My experience is that many Dr. will not prescribe the patches and in fact I have not found one yet that will. The doctors know the side effects from ADT but don't seem to want to correct them with an inexpensive prescription for the Estradiol patch.You should request your doctors provide a lab request for Estradiol. It will probably come back at near zero. Mine was at 5 pg/mL. You want it to be between 12-30 pg/mL.
Thank you for the heads up in that hurdle. Wonder why they have trouble prescribing it if it’s such an easy cure for something that is so debilitating 🤔
Welcome to jcoil and DC,You've come to the right place for helping your ex-husband DC. I see he's 48 years old and generally too young to be diagnosed with Advanced Pca. He or you should consult with us when making major decisions. We have a wealth of knowledge regarding Pca (excluding me) and could put you both on the right track for fighting the beast. You're a wonderful woman to help your ex-husband fight this terrible disease. (No words to describe my FN ex-wife). Anyway God will Bless you. Give my regards to DC.
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