I am almost 3 years on ADT I was diagnosed as stage 4 with a bone biopsy on a lesion.My MO started me with monthly firmagon injections and zytiga in 2021 july then switched to lupron and Erleada after a few months since I had a reaction to Abi after a couple of months .Erleada also gave me rash in the beginning so cut down to half dose which I have been on for the last 2 years.I get tested every 3 months and Scan yearly and so far mets have resolved and PSA is non detectable.I just had my 3 monthly injection today with lab work .All my results were excellent so I should feel great but I am having some joint pains and also I asked my MO when can I expect resistance to ADT and he told me I wouldn't want to know cos I already past that stage ! My doctor is a gerat doctor but he has zero patient empathy. Cancer is not just a physical disease ! Morale and mental strength is equally important .He should have told me I am doing great etc but now instead reminded me what if the treatment does not respond at some stage .It is thanks to websites and communities like this and facebook groups for Prostate Cancer that I read you fellow survivors who have been battling out for 10-15-20 even 30 years and enjoying life.I thank all my fellow PC brothers and wish them a long joyful life while they can
Almost 3 years on ADT + Erleada - Advanced Prostate...
Almost 3 years on ADT + Erleada
there is not one day that passes by that don’t think about resistance or even worse that the cancer will change to NEPC. It’s hard question and I never asked my doctor that question or how long I might have. I don’t understand your doctor reasoning or what he meant by you already passed that stage. what do you think what he meant?
I guess he is just stating the fact about statistics that generally after 2 years cancer cells form resistance to ADT but I read many stories about patients being on ADT for much longer than that even 6-7 years.Of course there are other options such as RT ,chemo, pluvicto etc but ADT is relatively an easier treatment,
Hi my …. Just my two cents worth observation. Last first, yes there quite many men here that last 6-8 years or longer on ADT . Some , a few , over20 years.
About empathy, if you are stage 4 , and it sounds like you definitely are , you should have a pallitive care Doctor and pallitive nurses crew etc. it’s their job to see to it you are comfortable and well looked after. If you are aren’t your fluffy best mentally, out of the box that crew should reassure you and make you feel warm and fuzzy , plus if you need it, you can get medications for anxiety and depression that will make you feel dramatically better. There are many recently new medications that help with that greatly. Write your palliative care doctor, or one of the nurses a message and let them know. They deal with this daily, they surely can help you. If you don’t yet have a pallitive care Dr / crew assigned to you , ask your oncologist and it’ll be taken care of. Just my IMHO, your medical care team should include a palliative care team naturally.
Best wishes
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Are you still on ADT? any genetic testing mutations? What gleason score you had?
yes I am on ADT and all is good .I had a genetic test mutation I think. I don't know the gleason score cos I never had a Prostate biopsy.They diagnosed me from the bone metastas
To my knowledge I didn’t get any Gleason scores , genetic testing stuff like that. When DXed I was and remain pa’ve with Mets - tumors skull to toe tips ( lots of bony deformations ) my vitals had tanked to nearly zero line , and I was encouraged to enter inpatient hospice. Immediately. They gave me a course of Xtandi Lupron to shrink my tumors and hopefully provide some pain relief.
None of my 5 oncologists have ever discussed future treatments …. I was told by my first oncologist that there would be no surgery or radiation for me, I was far past “ all that “ . A meeting with my oncologist consists of him switching off his computer, scooting his chair over …putting his arm around my shoulders , asking me if palliative is keeping me comfortable, have I signed their EOL documents about life on a ventilator, etc. … established my estate planning and most important, am i spending all the QOL with family I can accomplish ?
What happened tho, is that instead of croaking in a few weeks as expected, I turned out to be a “ super responder “ to Xtandi. It’s been 66 months now and ADT SEs have put me a wheelchair for over two years and I’m on substantial pain meds. my knees and feet are extremely damaged by metastasis. All my medical care staff are “ stunned “ by my ability to persist in life. At an oncologist meeting in December , a 70:year old oncologist told me , 3 times, that I’m the luckiest patient she has ever had. Never seen someone like me before. Just got my latest PSA test today and I’m still <0.1 undetectable. Next test in three months.
The medical team has always been straight up with me, no false expectations . I intend to keep on keeping on as long as possible, …my body fails more and more over time … I “ get it “ … but my glass is half full . I’ve got mobility workarounds, lots of QOL planning within my limited physical disabilities ( all state fishing holes have handicapped slots and on my etrike I can experience the stunning , world class, pacific coast hike and bike trail with everyone else. ) . Most likely a stroke or heart attack ( due to body failures ) will claim me before my cancer wakes up again, I sure hope so. It’s a fact of life that NONE of us croakers ever get better over time … it’s the disease or the stasis SEs that will kill us. I’d like to be one of those 11 year survivors or more , I know my body isn’t going to take much more of this tho. I’m about to lose my kidneys and there won’t be any transplants for 78 year old croakers lol. I’m flying licensed drones, doing repairs around the house from my wheelchair, and two days ago I put a set of new batteries in my sporty etrike ( while sitting in a wheelchair ) . I lubed and serviced my truck mtd etrike lift and I’m ready to rock and roll brother. ADT has saved me from hospice death and extended my life many years … like my oncologist said, I’m a lucky guy. lol
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Now that is a great story of how to make the most of what's on offer to you and us.The story is as awesome as your etrike, I love it
Off topic, but can you give info on the trike, the carrier and the hitch?
Yea no problem. The etrike is a EWheels EW-38 which is the heavy duty ( 500 lb max weight load ) version of their EW-36. ( $3500 ships to and unpacks in your driveway ) and the lift is a Bruno trailer hitch mount lift with a customized ( for the ew-38 ) pan / floor to fit the etrike. I’d suggest a different transporter. The lift / hoist that is motorized and puts the etrike in the bed of a truck is a better choice. Imho. About another $3500 for the lift and professional installation. The hitch is a standard 2X2 . The hoist I mentioned or even a small trailer … even a used back door lift handicapped van are all better choices as my setup wobbles around a LOT during transport ( scary ) it’s not the Harley Dyna Super Glide I gave up ( due to skeletal tumor issues ) but any port in a storm, as they say. Gotta admit it’s impressive but being handy at changing flat tires ( requires your own garage tire shop , scooter shops won’t touch these ) and changing multiple battery banks is handy but not a deal breaker ( a money saver. ).
Ive wanted to ask you after reading multiple posts what your supplement/ repurposed schedule is. thanks for any advice.
That’s an interesting thing …. Suppliments. I’ve modified my list over the last 5+ years. As many as 20 and now at just 6. I’m suspiciously inclined , after several years of mixing and matching… that #1 , modified fruit pectin might be extremely important, #2 Pomi-T , #3 BroccoMax , and Saffron both mixed in the tin and raw threads every morning, CoQ10, Boswellia . It’s probably just all psychological, as usual, but over time and considering my unexpected longevity success … I suspect that the fruit pectin and possibly some kind of synergistic interaction of the others or all of them may be very helpful for me. Naturally body chemistry, current ADT drugs and supplements regimen all figure together …but I may have accidentally hit on something that works for me. This is strictly IMHO and absolutely non medical and , after all, they are still just supplements….. but after “ years “ of confounding , dumbfounding to my medical team longevity , something seems like it’s working. lol.
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I love to read your post, Kaluber.
I can feel the flight.
thank you brother . 😁😁😁
You are an inspiration, brother. Keep on Keepin On!!
right on kal...love ya bw
Ryte on big guy , backatcha brother. Love ya back ❤️❤️❤️
Wow, Kaliber, that is inspiring! I would say, 'May the force be with you,' but obviously it already is! 👍
Thank you buddy ❤️❤️❤️
Awesome post Super K. Glad you are still rocking and rolling. As you know you are an inspiration to me, and I suspect to many others as well.
Keep on Triking
Preciate it buddy, I know there are large numbers of guys on here fighting like hell , just like me… I’m more vocal is all. I believe a positive attitude contributes a lot in the mix, keeping one tho .. can be difficult at times.
Love you buddy , thanks
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sweet ride.
lol …. ❤️❤️❤️
It’s my Hardly-A-Davidson.
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Ladies and Gentlemen and children of all ages. I wish to introduce you to Mr. Kal, who is living proof that if you stuff yourself with enough weed from the ages of 18 to 48 you can beat the fucking Pca odds. Put your hands together folks as Mr. Kal takes a bow.
Good Luck, Good Health and Good Humor.
j-o-h-n
This post made me realize we are overdue for getting a palliative care team in place. Thanks, Kaliber!
Palliative care is something that” all “ of us DXed croakers need and should have, even if you don’t use them much at first. Just IMHO. I resisted for a long time but my worsening condition caused me to relent . They are great , amazingly helpful and skilled at helping you mentally and physically. There’s no stigma attached to or at least shouldn’t be, using the best resources available to you when you’re croaking from stage4 cancer. Palliative care is a no-brainer, for me. Once again just IMHO.
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I don't understand the doctor's comment. Perhaps he just garbled the point he was trying to make. Isn't ADT-resistance determined by a rising PSA or positive results on a scan? Can you contact your doctor through a patient portal to ask for clarification? Unless you are ready to move on to a more empathetic doctor, he's still the doctor you've got and you deserve clarity about what he is telling you about the progression of your disease as he sees it.
You are right about the mental health aspects of dealing with this disease. We have many different ways of coping. I do a lot of research to try to understand what the doctors know (and what they don't know!). That helps me, but it also feeds my imagination with darker thoughts at times. Anyhow, your statement, "Cancer is not just a physical disease ! Morale and mental strength is equally important " rings true to me. And let me just say what your doctor failed to say, "You are doing great."
You may have major decisions to make at some point in the future. If you don't feel that this doctor is not seeing the whole picture, will he be the person you want to go over the options with?
I don't think he meant anything negative cos my results are great ! I guess he expected resistance by this time and is just surprised that ADT is still working well but as you put it he had a weird way of saying it ! Instead of saying "you already past" it he could say "you are doing great don't think about it .We'll think about it when and if it happens "
Yes I think I should go for a second opinion at a certain time .I saw a few RO in the beginning and they all advised me to do RT but my Doctor said no need at that time also I saw a doctor in Europe and although she was a RO she told me why waste your bullets when you don't need them .She told me I can get RT in the future when the ADT fails .Anyway I am lving my life as usual and take one day at a time
Well, welcome to the lack of empathy club. I have probs untreatable peritoneal mets likely from the 3D Da Vinci surgery back in 2012, by a famous surgeon in Australia. My situation was only recognised 2 years ago via PSMA-PET. My rad onco who I only work with, but a great Professor and doctor who specialises in prostate cancer, that will by needs probs change soon, only ever gives negatives, and always wants me to come off ADT and go home and forget about it. Not on your Nelly. He just in passing last meeting dropped, 'well you are probably castrate resistant now, just mildly, but trending there, what do you want to do? Have you had an MO (he knows we haven't done that) and do you want an MO?' He has laughed at me 2 yrs ago when I said, 'do you think I need an MO now'. I am only still on basic ADT (Zoladex) and Casodex.....asked for Zytiga and Pred 2 yrs back, but need to be castrate resistant in Oz for that on PBS. Darolutamide also locked off till Dr declares I am castrate resistant....as already on Casodex...which only happened late '23 anyway, monotherapy ADT before that. Lucky to still be here, SOC to failure as we know. Had EBRT with him 2017 and SBRT to one treatable met of 4. Only met he said treatable, rest in 70 gy zone already treated and he wouldn't go there. We have no effective proton beam therapy in Australia. One coming on-board in 2025 (Bragg, South Australia) but likely not going to treat old adults except head/neck cancer till late 2020s....if at all. Kids have priority and you know, understandable, scarce resource is rationed via funding.
Good post brother, I like your “ lookout for my needs “ attitude and your perspective. I think it says you like to learn everything to take care of yourself as best as possible …. Something all of need to do if possible. Just say’in.
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I would never ask those types of questions it's you and you are not a average everybody is different so eat healthy and exercise well and stay strong and positive the mind is a powerful tool use it.
Please allow me to just be simple and explain my understanding. The MO will answer as honestly as he can to any direct question. After 2 years on Xtandi for palliative treatment I finally worked out the question I had wanted to ask and researched the best answer I found. Doctors can guess how long we have to live but best idea is, can you keep getting up and moving/ exercising? If you can and are not confined to sitting/ lying down for more than Half each day then you are fine and have more than 2 months to live and possibly 30+ years. When you can't, then 2 months is possibly realistic. You can do a little in many years but even more in a day if you work at it. What you plan for tomorrow is good but what you do today is more important. If exhausted today have a good rest and plan tomorrow. If have energy today, get out even if only a short walk and look for the beauty in whatever you see. If you are able to do anything constructive brilliant. If not enjoy what other people have done. Hope you don't feel this is trite but it keeps me going. I still worry each morning how I feel when I wake up but, then I just respond as best I can. About to go for walk as weather good. Might manage 100 yards maybe 2 miles. Slow definitely but will enjoy as long as I take it easy and get there and back safely. Good luck and keep going. Ask MO questions you want answers to and maybe help them with answers. You can always tell them how their answer makes you feel.
Good and uplifting Post there Brendan.....Thank you.....
Good Luck, Good Health and Good Humor.
j-o-h-n
What was the reaction that made you change from Xytiga (abiraterone) to Erleada (apalutamide) after a few months? Erleada was likewise proposed for me at half dose to counter my seizure history. I knew that was done for rashes, but wondered if it reduced its effectiveness. So I chose abiraterone a few months ago, with no SEs so far.
When I was first diagnosed I had pains in my legs to get help even in walking.Abiraterone is a miraculaous drug that made me a different man in 2 months but then my liver functions shot up to the roof so my MO paused and switched to Erleada which gave me rash and itching all over my body.Then he changed to dose to 2 tablets from 4 and I have been on it for 2 years and it seems to be working for me with not so much SEs
Right back at ya! Godspeed in your journey!
6 years Eligard injection every six months Zytiga with Prendisone while ADT does have its draw backs it's keeping me alive. Never give up Never surrender Leo
This is great to hear as my husband was just started on Erleada and quarterly ADT. Says his bone mets are responding. We are going to ask about Estrogen patches to help with bone density. I have joint pain all over and I’m the wife!! You are lucky this is working!
To Mr. and Mrs. PELHA
For better or worse in sickness and in health........... in contagious and incommunicable.... etc.
Good Luck, Good Health and Good Humor.
j-o-h-n
A Day at a Time. 👍
Always enjoy life. Every day. Every minute.
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