I hope everyone here is finding success and positive moments in this journey as we make our way through this new year ♥️ Hoping to ask for an opinion here just to do my part in making sure my dad gets the best shot at success with this. I will be updating my BIO again this week for anyone with a similar path that could benefit from the information that I have gathered to this point through my fathers experience.
My father has two close lymph nodes with cancer and one suspicious spot on the pelvic bone which in my opinion is likely a bone met considering he was Gleason score 9 and a PSA of 226 at time of diagnosis.
They redid the scans and still the same situation, pelvic bone shadow still not conclusive. Two close lymph nodes cancerous. They told us that these scans came back with FANTASTIC results. I was happy and relieved to hear this as they are telling him that it is still localized and that they are AIMING for a cure.
He just completed 5 weeks of Radiation to the whole pelvic area with a booster of radiation at some point as well while he remains on ADT (Firmagon shot once a month). SO they said now we wait 6 months with blood work once a month and we will see how well the radiation treatment worked and if more radiation is needed. Just checking to be sure this is the next standard step? They said no Chemo required since no distant spread.
After hearing this I thought well best-case scenario is they cure him. and worst-case scenario is that they treat him for life but that the life expectancy would be 10+ years given the optimism and choice of wording after these last scans. Am I correct thinking this or does having 1 met to prostate bone with no distant spread still bring a prognosis of only 5 years? I am going to stay positive regardless but I still want to know how good or bad of a position he is in.
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FormulaRob
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2 years of continuous ADT with abiraterone is SOC with whole pelvic radiation. You cannot pause and check. That’s like starting and restarting antibiotics. It creates resistance.
Sorry I meant that he is sticking with a firmagon shot every month. The 6 month pause is just from radiation. The reason is because they said 5 weeks of radiation is like they dropped a big bomb of radiation in his pelvic area and that it will continue to kill cancer cells for months to come. So for that reason they will not know how successful the radiation was until the do new scans 6 months from now.
during these 6 months he will remain on firmagon every month and also every month he will do blood work to monitor the PSA levels and testosterone levels I believe to confirm that he remains responsive to the ADT treatment
No abiraterone. When looking this up to educate myself I see it is for advanced prostate cancer that is most commonly offered to men whose cancer has stopped responding to other types of hormone treatment. Basically second-line therapy.
Though it goes on to mention that so men may be offered it as a first line treatment although it doesn't mention any pros or cons of using it as a first treatment.
and the other mention for it being prescribed is if you are no longer responding to chemotherapy OR if you can't have chemo or if you've opted against Chemo.
So for my fathers situation. localized and responding to Firmagon, it appears that it is not necessary?
Another vote for abiraterone here. My situation is much like your Dad's (spread to pelvic lymph nodes, though no bone mets seen yet), and my doctors at JH have me on Eligard plus abiraterone w/prednisone for two years, starting radiation (actually 44 sessions of proton therapy) at 6 months, which is week after next. As my radiation oncologist explained it this week, the combined ADT makes the radiation more effective.
Thank you Atabeach, that pretty much is bang on the same. I really hate that we can't just trust the team to do what they need to do and give us the best chance at success. The cancer specialist told him that abiraterone is only for when the cancer has spread and since it hasn't he said he won't be seeing him anymore.. going forward will only be with urologist and radiologist. That was end of discussion. My father has an appointment with the urologist next week and he will ask him abnout it once more although the urologist probably is not the guy to ask.
I forget, does your Dad have heart issues? I'm 69, in okay but not great shape, on Lipitor for cholesterol, and having no trouble with my ABT at 6 months in. They do keep an eye on my blood tests for potential liver impact, but so far so good.
Hmm nope he is apparently extremely healthy despite this cancer of course. Years of some hard drinking too yet fully healthy lol. I am glad that you are tolerating it well. I assume that you are doing some sort of cardio regularly to help combat any negative side effects for the heart? and if you are not then ask your team first to make sure that is recommended. I am just assuming cardio would help things rather that worsen
Yes, I walk several brisk miles most days, and work out with a personal trainer twice a week. Yeah, like your Dad I'm in better shape than I deserve given past habits, but doing well except for this pesky cancer thing ... 🙄
See LATITUDE and CHAARTED trials. Abiraterone is approved for CSPC stage 4. Get the abi from an online pharmacy (I use scriptco.com) or deal with potentially huge co-payments.
He could probably do the low dose 250mg generic abiraterone with breakfast and low dose prednisone replacement and do just fine with little added expense.
He should monitor his blood pressure in order to match the absorbed dose of Abiraterone with a proper (matching dose) amount of Prednisone in order to avoid high blood pressure.
It will be not easy.
I personally would recommend to take always the same amount of Abiraterone morning on empty stomach.
Thank you Seasid. Yes I have read here that this abiraterone is hard on the heart. Because no signs of distant spread they told him that it is not necessary. But maybe its an added safety of going on them anyway.. unless the heart effects are extremely bad
Thanks Mateobeach, The cancer specialist told him that abiraterone is only for when the cancer has spread and since it hasn't he said he won't be seeing him anymore.. going forward will only be with urologist and radiologist. That was end of discussion. My father has an appointment with the urologist next week and he will ask him abnout it once more although the urologist probably is not the guy to ask.
I appreciate the community here for making me aware of what to ask for next. Putting your full trust in your team is hard but this place here gives me confidence along the way
Hi Rob. Just checking in since Ive not reached out for awhile. Hope you saw the Abiterone advice. Especially since I think his care is handled by the urologist. Anyway I’m always in your family! ❤️ Cheers to tons of QOL this year🌞
Thanks Kate hope life has been treating you well. I did see it and my father will be bringing it up with his urologist next week. He may not be the guy to say it too but its his next appointment and maybe he can pass it on to the other doctors. Curious to see what they say. So thankful for this community.. so helpful its hard to believe this exists. Just amazing
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bone met
questions after tadiotherapy?
T2c N1 M1a
Zometa for bone strength to be given only with multiple bone Mets or to all stage 4 patients ? Even stage 4 with multiple lymph node Mets ?
Surgery or radiation, looking for some advices 
