16 Years: Surviving Metastatic
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- čas přidán 5. 02. 2023
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Joel Nowak is the founder, CEO, and Executive Director of "Cancer ABCs," an organization devoted to providing plain-language resources to cancer patients, and more generally, to improve the lives of cancer patients. Here, Mr. Nowak describes his own personal experience with prostate cancer and three other cancers he has been faced with.
To learn more about Mr. Nowak's organization "Cancer ABCs" visit their website at www.cancerabcs.org/
Don’t know your stage? Take the quiz: Visit www.prostatecancerstaging.org
To learn more about prostate cancer visit www.pcri.org
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The Prostate Cancer Research Institute (PCRI) is a 501(c)(3) not-for-profit organization that is dedicated to helping you research your treatment options. We understand that you have many questions, and we can help you find the answers that are specific to your case. All of our resources are designed by a multidisciplinary team of advocates and expert physicians, for patients. We believe that by educating yourself about the disease, you will have more productive interactions with your medical professionals and receive better individualized care. Feel free to explore our website or call our free helpline at 1 (800) 641-7274 with any questions that you have. Our Federal Tax ID # is 95-4617875 and qualifies for maximum charitable gift deductions by individual donors.
The information on the Prostate Cancer Research Institute's CZcams channel is provided with the understanding that the Institute is not engaged in rendering medical advice or recommendation. The information provided in these videos should not replace consultations with qualified health care professionals to meet your individual medical needs.
#ProstateCancer #CancerABC #PCRI
Happy for you but I have stage 4 prostate cancer, metastized into bone, bladder, left lung, liver. Been fighting this for 9 years but each 6 months I get a little weaker and weaker. PSA is now over 100 regardless of all the treatment. Don't know how much time I have left, I'm 74, got this from Agent Orange in Nam. We shall see how much longer I have, but not worried about it at all. Not afraid to die because I've lived a life already. Can't live forever 🥳
Be strong and enjoy every day it’s a gift in your 70’s ❤
I am amazed of your strength,cancer is not a dead sentence indeed as it fights we need to fight back aggressively.
Fenbendazol an option ?
You’re strong. Keep at it. And God bless!
What is your treatment for bones?
A ray of hope for metastatic prostate cancer patients ❤ lots of blessings and love
I'm 81 years old and have had prostate cancer for 22 years. I had external beam radiation for 35 days. A year later the cancer returned so started intermittent hormone reducing therapy with a drug called Zoladex. My original Doctor retired and a my new Doctor injects Zoladex every 3 months. My PSA has remained steady for the past year. I'm a lucky guy.
Blessed by God, I would say!
What stage was the cancer? Because my dad is also having same issue
81 you lucky man
So glad to hear you are ok… and what do you eat? My dad has same cancer, after 6 yrs in pills treatments ,he will start I.V. Chemotherapy in a couple days, his cancer the doc, said is out if control, He have been eating eggs daily & carbs, not hearing my suggestions of not eating that, so now i want to know what menu he needs to have, to be strict with him, greetings from Mexico🇲🇽
Hello, my father has prostate cancer also and we’re running out of time. Can you please tell me what you have done to beat this cancer?
Would be so appreciative if you could take the time to explain it to me.
God bless you sir 🙏🏼
Thanks for reassuring " it's not a death sentence". That gives me reason to fight on. Thanks for sharing.
You will 🙏 keep going 💪
I heard corrosol fruits were very good to combat this cancer and what does work also is cutting out all sugar, coffee and meat with the exception of fish, just vegetables no additives whatsoever to rebalance your ph.. Also look up on youtube "What 1 teaspoon of ginger did to cancer cells"!
@@GarrishChristopherRobin777 Try reading the book of John, Matthew, Luke and Marc, you'll get to know where life originated from, it could change your point of view!..
Good video. Am in year 13 with my metastatic prostate cancer from a PSA of 37 and Gleason of 9, so it’s indeed all about management and control, staying positive, diet and working proactively with your medics.
Did you get chemo. Best wishes for you ⭐ I don't understand psa levels. Does it mean higher psa levels are worse? does it mean more bone metastasis or sth else
What was your psa free number
@@beebeeramone4641unfortunately for some psa doesn’t matter :( especially if it’s castrate resistant.
Are u alive?
Alex, you are a true asset to PCRI. Your knowledge of PC is amazing and I love your interviews and your questions to Dr. Stoltz.
I second your comment 100% !!!!
Two years ago, at the age of 53, I had my prostate removed, and so far no reoccurrence. I appreciate this video, especially the last few minutes. We really do need to take charge of our healthcare.
Holy Smokes! That's awesome and inspiring. I hope to say the same thing in 15 years!
Great to hear your positivity after going through so much. I live in the UK so it's possible that treatment is a little different over here. My friend age 69 was diagnosed with metastatic prostate cancer about a year ago. He had a PSA of 150 and after an MRI it was discovered that the cancer had spread to the bone. He was told to expect the worse as there was no cure. He has been given two treatments. 1) a 6 month hormone injection of Decapeptyl and 2) Monthly tablets of a novel hormone treatment called Apalutamide. His PSA has gone down to 4 and he is generally in good health apart from frequent sweats. It is giving him some hope that the future might not be quite so grim. When I showed him your story, it has further given him hope, although the medication is different. Although Apalutamide does not promise a cure, if he can survive another 5 years it's looking as though the new personalised mRNA treatments may offer some hope.
Thanks you for sharing your story and thanks also to the researchers, doctors and nurses who literally are saving my friends life
Best wishes to your friend. I hope he will win this battle. Haven't your friend gotten chemo?
@@ahuyldrm No he was offered Apalutamide instead of chemo , so he took that route . I'll pass on your best wishes thanks
@@forthemusic9875 thanks for answer i hope your friend will get well soon🌸
@@forthemusic9875 hi my father is suffering from same. But they didn't give any harmone therapy. Now they are giving chemo. May i know more about your friends treatment it might help us. Plz
Would have liked to heard more about his diet, but anyway for those that is battling cancer go plant base as much as possible, and go light on the sugar,as well as dairy,you pray for me and l will pray for you... Peace.
WOW, absolutely love this guy and his attitude, thank you so much
Thanks for sharing
What an amazing testimony. This man has a gift of positivity and showing others the way.
As usual, extremely informative. You can't stress enough the importance of doctor patient communication AND research/self advocacy.
4 Cancers. Man I Can't Imagine Going Through That. Good Luck To You Man.
This is super helpful and full of vital information, coming from a person who has actually gone through all this and is so positive about the whole thing. In today's age, we have to be thankful to the internet and the loads of information available. Thanks sir!
Fantastic video, thank you both for the great support. I have stage 4, it was diagnosed on the 2nov 23. I have been put on a hormone treatment and it seems to be working. No more pain in my bones or hip. Fingers crossed. My lovely wife is super supportive and is researching everything, and all the anti cancer food which might help. Totally agree you need to know what things to ask your doctors. I have a printed form with about 50 questions to help get the feedback from them. Yes you need to understand your cancer. Keep up the fantastic information and support. Regards Steve
My husband has been on ADt for two years, also stage 4. I think the plant based diet is helping also.
My Dad was on hormone therapy for 2years after that it didnt helped now he is in Second line of treatment, Aiberatetone was suggest for hormone therapy let me know which medicne are u been suggested
Also adivce company brand also matters while taking medicine bcoz in todays market there are many startup and large markets sell aiberaterone with difrnt company
@@claudiafinelle hi I have the tummy implant it is working very well. I am also following the New Mediterranean Diet plus adding the cancer fighting food. It is working all my pain in my bones has gone. Although I do have hot flushes. Much to my wife's amusement 🤣
@@roming6722 Thats great! Exercise seems to be very helpful too. Yeah,the hot flushes are no joke! Good luck to you, to all of us.
My best wishes for you. Haven't you gotten chemo? My dad: bone metastasis is getting hormon therapy and chemo at the same time but his doctors said "don't panic we should trust each other". I don't know what to expect i am so nervous. He has a catheter because after his first chemo he has had trouble urinating.
Great content. Drs are great but human. It’s your job to learn what you can.
Alex so loved this post! Joel having all these different cancers, surviving and handling it so well, not miserable but adjusted to his condition and looks so well and happy! And patients research is vital and after 2 years i am still learning! Every post is gold, and your caring dedication keeps me well! Thank you as always!🙏
He has money he is a CEO.
Another good one. Thanks.
Thank you. In 2016 I started my cancer journey with a PSA test at a health fair that ended up at 48 or 50 at the age of 50. I was at the mercy of my team but I believe they are a good team. When I first got my adt vacation I learned my doubling time was just over a month. Very long story short the information PCRI and other sources provided me allowed me to change teams (one that would utilize the Axumin scan). My original team wanted me on Lupron prednisone and Zytiga (the triple play) until it stopped working. This last May I finished more radiation and I’m thinking they got the last of it. I’ll be on the triple play for a total of 2 years. I’m expecting to be able to stop adt and I’m hoping forever… time will tell.
Excellent content. This young lady must be a trained journalist. she is a great interveiwer.
Yes, thank you for this post, Alex and Joel! We need more information provided by actual/real individuals living with/ surviving advanced PC. I have learned a lot from PCRI over the past 2 years. It is rare, however, to hear from men dealing with this condition ( advanced PC). Best wishes!
very encouraging
Love you man you are an inspiration to us all who have this disease power to you stay strong!!!💯🦾🙏🙏
Doing your research is very important when it comes to treatment decision points. PCRI has been very important to me as part of this education process. I read clinical research trial studies, and watch the Grand Rounds of Urology lectures. It all helps when planning your PC journey.
You are a welcome site buddy I'm metistatic 4th stage castration resistance. Pc.
Great insight to learning about my condition furthermore moving forward and adjusting to my Prostate Cancer. I found talking openly helped me adjust to my mental health issues.
Thank you for sharing your story, you are a survivor and an inspiration for us all!
thank you
Thank you
Outstanding!!!
Thank you so much for sharing
Was very informing
What a terrific interview!
Thank you Alex,
for giving us this type of perspective! Thanks
Blessings 🙌 your story was amazing. Thank You
This information is hopeful and helpful.
What was you diet like during this time? Did you make any changes?
Wonderful story! So encouraging for us in the metastatic boat
Excllent interview very positive and supportive. Thanks
Terrific Interview. My heart goes out to Mr Nowak. What courage in the face of adversity! As I start my own PC journey, I am inspired by his example. Dr Sudevan Wisconsin
Unbelievable he went through a lot
It eas me about it what he said theres a hope even your cancer already spread. But I think it depends what your body react to your treatment. Be positive too, be strong. I just had my prostate needle biopsy and still waiting for the result and my bone scan too because in my mri they saw 2 tomur in my prostate and one in my bone. But my psa was only 3.8 and I'm 62 this yr. The only thing I'm praying for is that Before I go I want to see my son turn 18, so he can understand whats going on, he is 12 this yr. Thanks for sharing its helps us a lot
Glory and Thanksgiving to our maker,you will be cured.1/ toxin's to stop and avoid: all refined sugar, pesticides, herbicides, high fructose preservertives Nitrites GMO microwave foods MSG margarines vegetable oil soy products Diet and artificial sweeteners colors processed oils, reduce grains, lectins.
My Lord my God, Before you go for chemotherapy:: NEW research 100 times better than chemotherapy and more effective than chemotherapy kills cancer stem. Take 1/2 teaspoon to 1 teaspoon of Dry Ginger not fresh ginger less potent daily dose, Don't heat above 85 degrees .
zinc levels help, with other minerals, vit. D, and tomatoes - I hope you a healthy recovery in Jesus Christ name.
Great to see and hear you Joel! You are one of my PC heros. I was so excited to meet you a few years ago at a PCRI Conference in LA> You were there with your wife and another of my heros Todd Seals. You gave me hope and you are definitely an Inspiration. Thanks for all you do, to your dedication to research, communicating info to us all. Thanks much for your weblinks. You are definitely an "outlyer"". Love that term.
Love you Brother ! Keep the Faith!!!j
I have prostate adenocarcinoma, Gleason grade 4+3, score 7/10, group 3, what I have to do
I am 85 and found out 2 years ago had Prostate cancer with Gleason 9. It is nice of you to make this video. So far I have done nothing. Time to make some choices!
What is your PSA?
@@Debijo7 My PSA is 6.160 and my free PSA is 0.592. What is your opinion?
I am a healthy 85 year old. My BMI is 22 and I eat mostly plant based. (no meat) I exercise and walk every day and am taking Yoga classes.
@@zpoedog my husband is 80 and as it is on Ellegaard and Xtandi year and he is supposed to be starting radiation for five days a week five minutes a day for seven weeks. I’m very concerned about these decisions, but I don’t know what else to do. As far as your case, personally, I could not imagine not doing anything considering where my husband is at. If you have a PSA that means that your body is making the antigen to the cancer. What comes out of the cancer that’s how a PSA is measured by what the cancer makes. So something is going on in your body yeah I think if they would’ve caught my husband’s cancer before it got so high his PSA was 27. Before surgery and after surgery went to 18 and then it went up to 24 so long story short they started putting him on the Ellegaard in a couple months later he got on the Xtandi yeah my whole point is if it had been caught sooner, we could’ve done different things instead of having to have a radical process to me my opinion is that you need to first off it depends on what you want to do if you don’t wanna do conventional medicine, I suggest you go on a fast and then start eating only good food and drinking. There is a guy online that cured himself of stage four cancer by diet. Well let me correct myself he’s not cured, but he has given himself four more years of life where they gave him two months.
Have you done any research on your prostate? Do you know what a Glisan nine means?
I'm so glad for you. I have metastatic prostate cancer and I'm suffering badly
Turmeric 1/2 gm + 2 pinch of blackpepper in warm milk ...have slowly ..relieves pain feel lively ...Also apply externally turmeric mixed slight oil....
@@anilmehta6425fenbendazol?
❤❤❤
Another excellent informative and encouraging video. What really grabbed my attention were Joel's comments on Orgovyx/Relugolix (O/R). The general response to O/R's FDA listing was pretty muted - a bit "ho-hum': "yes, it's good to have a pill for people who don't like injections". That seemed to gloss over the fact that the Lupron injection sometimes produces a PSA flare (mentioned by Joel) but also could produce a benign but concerning tummy lump at the site of the injection. A small published study also suggests that O/R drives PSA down faster and (sometimes) further than Lupron etc. This might be important because a lower PSA nadir seems to be correlated with a reduced risk of relapse. Lastly, O/R stops working from the time you stop taking it. That would seem to be a plus in those instances where you might want to stop the treatment immediately rather than wait for the effects of a 3, 6 or 12 month injection to wear off. Food for thought. PS, Like others, I'm a bit baffled as to why Joel didn't undergo post relapse radiation therapy.
My husband was diagnosed stage 4, low volume metastasis 20 months ago. His Mayo Clinic oncologist recommended he start with a Firmagon injection, which does not cause a flare. His PSA dropped like a rock from 24 to 2.0. A month later he started Lupron (every 3 mos.) in combination with Zytiga. No flare. His PSA dropped to negligible very quickly and remains so today. (He also had 26 rounds of radiation early on.)
Hi I think some people get a flare with Lupron and some don’t. The claim made for Orgovyx is that no one gets a flare. I had a similar experience to you with Lupron being used in tandem with Zytiga/ Abiraterone. After being on Lupron for 2 months I was prescribed Abiraterone as an add on. The PSA dropped to 0.04 after a further two months. The peak prior to Lupron was 16. These results are consistent with the STAMPEDE trial findings in the UK published in late 2021.
>>Undetectable levels of Prostate Specific Antigen (PSA) have been reported from the first patient with metastatic castrate-resistant prostate cancer (mCRPC) to ever receive two cycles of Clarity’s 67Cu-SAR-bisPSMA at the 8GBq dose level. PSA is a marker of tumour burden, clinical response to treatment and an indicator of the recurrence of disease for prostate cancer.
🙏🏿
What about for bone Mets? Dedifferentiated cancer? My dad has done hormone therapy Lupron and abioderone then 8 beam radiations and two doses of chemo that made him really sick. It spread to the femur now from the hip joint.
Hello. Thank you for video. I did not understand names of medicines except Lupron. Maybe someone could help and write which medicines were named. English is not my native language. Thank you in advance.
My dad is 86 yrs old . Recently he diagnosed silent metastasis prostate cancer 3 rd grade . He had a TURP . After that he still have severe pain off n on . He did pet scan. He started getting pain and shrinkage of ureter , now doctor suggest to do stent to put in ureter . He started incontinent of urine . I don’t know . God please help . He going through a lots of pain .he is having evry 3 month hormonal therapy injections. Tab 2 abiraterone once a day and wysolone once a day .and with pain killer and tamlocpt . Doctor said my dad can’t get normal . Atleast if he won’t get pain . I would somehow satisfied . So stressful when cancer cought
My husband is going through the same things. So much pain and same medication. Had to stop meds. Too much. Tremendous weight lost. Can’t walk. Foley catheter keeps developing uti. Leaking.
Sorry I don't understand if his metastatic reoccurrence was in the bones or soft tissue (typically the lymph nodes) . Both areas involve different treatments and outcomes....Did I miss something? Otherwise thanks for your story.
फोर्थ स्टेज में क्या दवाई ली है जरा बताने का कष्ठ करें
My dad has stage 4 postrate cancer and his at the moment paralysed, losing his voice and constantly in pain. All treatments have failed and now I’m just very confused and concerned what next for him
I am on Nubeqa pc hormone resistance
Thank you Alex! Did this gentleman have radiation and/or chemotherapy?
👊🏻
I hope everyone gets cure at some point from this terrible disease. I seeking an answer to side effects of the Lupron shot. My husband suffers terribly from it. He has severe fatigue reaction to it. And he is in the bed can’t do much anymore. I’m bagging anyone to answer me, is there a remedy for this? I am praying for all the people who suffer from any kind of illness. Can anyone help me please?
Hello Fatma, we are sorry to hear that your husband is suffering. Here is a video we did on hormone therapy side effects: czcams.com/video/E_zZ-lG6eeY/video.html
Please reach out to us via our website, www.pcri.org/helpline if you would like to talk to a prostate cancer patient who has been through hormone therapy and can give you information on the process.
Have never seen any info on de novo treatment for stage 4 gleason 8
How did he miss the chance for salvage RT? Seems crazy for his PSA to all of a sudden be 87 after being undetectable. Where's the monitoring?
Does this gentleman have the ATM gene?
My Father 60, has been diagnosed with metastatic prostate cancer last year & hormone therapy (lupron) is going on for him. PSA levels have been reduced significantly. But he is having consistent pain from shoulder to arm.
Although we are giving pain relief tablets as well.. but I don't see much improvement in pain relief.
Any suggestions?
Good luck and best wishes. My father is 64 he is taking hormone and chemo at the same time. His belly and arm were aching before chemo but he got first chemo and now he seems fine with his belly and arm thank god. But i don't know what to expect in future. What was your father's psa level?
I have heard Provenge therapy may help with stage 4 in the bones.
Do radiation therapy it is help full for reduce the pain of bones
Turmeric externally oil mixed lot amount n internally 1/2 gm n 2 pinch of blackpepper in worm water....relives pain n reduces tumour size ..surely
ED here, hang in there. know about the lupron, 1 dose, and i hate it.
After Listening to one of your podcasts Mr. Novak, you’re guest Dr. ken Pienta, painted a very grim and devastating opinion about Oligometastatic prostate cancer. His opinion, is quite the opposite of Dr. Mark Schultz. I enjoy your Podcasts as they are beneficial to those of us who need them, however, this is one that I don’t think anyone should listen to! We all need help, and this doctor left none!
Neem
Very little details on his actual staging and spread that he claims was metastatic. A couple of lymph nodes? Local or distant from the prostate area?
It just doesn’t sound like he had that serious of a case. Good for him, but for those of us with actual spread to to the spine and leg bones this video doesn’t seem to provide any real hope.
I heard Provenge therapy may help if its stage 4 in the bones
This is super helpful and full of vital information, coming from a person who has actually gone through all this and is so positive about the whole thing. In today's age, we have to be thankful to the internet and the loads of information available. Thanks sir!