Hello everyone, I’ve been on this forum for a while and it’s so amazing to see everyone’s journeys with this awful disease.
My dad (60) was diagnosed with prostate cancer in 2012 with a Gleason of 10. He had his prostate removed and had radiation at the time of diagnosis. He’s been on hormone therapy ever since. They found some cancer in nearby lymph nodes but he had them removed/radiation was given. At around summer of 2019 he began to experience very bad lower back pain and it was so bad to the point where he couldn’t sleep. We found out at around November/December of 2019 that his cancer is back and they found a tumour on his sacrum bone (part of the spine) and a very very small amount in his lungs.
He has had 5 rounds of radiation to his bone. He is on zytiga now and doing okay, he cannot walk as good as he did before but he’s still healthy and has changed a lot of his diet. Because of his medication, he has gotten diabetes and it’s just always something around the corner waiting for him. His doctor (I think oncologist or urologist not sure) is not considering chemotherapy as of right now. However his radiologist recommended him to go to a chemotherapy person (I don’t know why) and we are a bit confused on what to do. I don’t know his prognosis or how long he has left.
I’m only 19 years old. I’ve always wanted him to see me graduate university, see me get married, have him meet his grandchildren. Now I cry every day knowing that might not happen. I guess I’m just posting to vent. I don’t know what the future holds, I hate this ambiguity. I just want to see my family happy again.
Is there anyone who has experienced recurrence? What to expect? The survival rate?
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chocolatelover_123
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Hugs to you!! I know it's hard, very hard. But he's still with you, enjoy every moment with him. He is STILL with you! Many many men go longer than your dad. As long as treatment is working, you have time with him.
My suggestion is to work hard at staying in the now... so much unknown in the future... but for today, treatments seem to be working. Many here can give you treatment advise... I’m more on the psychological side here (I’m a social worker with pc). Enjoy the time today, for what you have. “Who knows” if your dad will see those wonderful life events before his transition. Share with him what you love about your relationship today!
You are a great support to him. I know that, just by your being here. Keep us posted on your (plural) journeys.
Thank you for your advice and kind words. I’m trying to live one day at a time but it’s inevitable that I think about the future at times. I hope everything is well with you!
i doubt the diabetes is from the meds. i developed diabetes (Type 2) from eating too much processed foods that contain too much carbohydrates. i am now diabetes FREE!! and dropped 60 lbs by a very simple trick: stop eating anything made with white potatoes, white rice, cut out ALL pasta and bread. That's it. Sounds hard but it really isn't, because....
I ate all the meat, fish, cheese and dairy i wanted, which, because that food is so filling, i was never hungry! and after a while, ate less of those high protein, high fat foods, so my stomach shrunk and the diabetes disappeared!!
Good luck and know you're a good child for caring so much for your dad.
I was diabetes free before adt. Since the start of adt ... Lupron Xtandi Zometa , I have developed mild diabetes, enough to have to take metformin every day to control it. My GP diagnosised it as “ drug induced diabetes “. Says it will clear up if I go off adt. My a1c remains a decent 6.7 but my bg is highest when I wake mornings and lowers the most in late afternoon. Totally the opposite before adt.
Drink more water, do more exercise, check out ayurvedic herbs, esp. Turmeric (with black pepper), Ginger, and if you can afford it, get Zyflamend caps, a potent combo of 10 different herbs, mostly chinese.
I already take more than 30 supplements every day including tumeric and have so much fluid thru put that I urinate every 15 - 20 minutes literally 24/7 . It’s a side effect of Xtandi and Prostate cancer it’s self. GP has offered to give me something to slow it down but I declined because my urine is grainy sorta like sand and don’t want to build up kidney stones. I keep jugs bedside, in the car etc. to deal with it. I’m one of the 5% that adt devastates , just getting up to go to the bathroom or walking to out to my car is an adventure , I’d buy an electric mobility cart but don’t know when my adt will fail and waste the money. House isn’t designed for one anyway. I was DXed late and my medical crew thought I should seriously consider hospice . That was 15 months ago and I have been in treatment induced remission for 12 month of undetectable PSA. Trouble is the “ cure “ is so devastating that I could croak from a stroke or heart attack any minute instead yayahahaha. The treatment has extended my life but doesn’t come easy. The good part is that I’m still kicking, that’s all that counts to my wife yayahahaha
grainy urine... my imagination is running wild with that one, dude! just how does that feel?? I've heard guys talk about excruciating pain passing kidney stones the size of a salt crystal... yikes. gonna definitely have some odd dreams tonite, for sure! Zyflamend contains 10 different really cool herbs, that could reduce your 30 supplements to 21. Extracts, from various parts of plants, depending on the plant -- roots, rhizomes, bark, leaves
Rosemary
Turmeric
Ginger
Holy Basil
Organic Green Tea
Hu Zhang
Chinese Goldthread
Barberry
Organic Oregano
Chinese Skullcap
Extra-virgin organic olive oil
Organic sunflower oil
I use a "chamber pot," right next to the bed, m'lord... very hoy polloy. plastic gallon container, hole cut in top to accommodate my massive member. yeah, massive. or was, when i was in my 20s. urk. Now i need a tweezers and magnifying glass to find the damn thing. I hardly have to wake up now, don't even turn on lights, got it down to a science. Also have a bathmat for when i spill some, being half asleep. Sheesh, the things the world really needs to know about me, right?
So this horse walks into a bar, the bartender says.... "If you think I'm gonna ask a horse 'Why the long face?' when horses speak Arabian, you're in the wrong joke."
Then the horse says, "Who has to ride me before I can get a drink around here?"
My dad has totally changed his diet avoiding any carbs and just eating vegetables and greens and peanuts, he’s lost at least 5 pounds. He has a strict timetable of when he eats as well. I heard that dairy products have a negative effect on cancer patients and diabetes, not sure if this is true? Any insight can help. Thanks for your kind words, hope you had a good day!
I did have a good day, thnx. And thnx to you and Kaliber, know a bit more about T2D. I get tested for PSA and A1C every 3 months. Both are lowest ever, with last A1C = 5.4 ! I think drinking a solid 60oz of H2O every day helps and exercise burns up blood sugar first, then goes after my fat - Intermittant fasting sends me into ketosis so that may explain why the Unholy 3 meds I'm on (casodex, finasteride and tamsulosin) aren't causing diabetic symptoms.
ya, PCa supposedly loves eggs and chicken but I don't buy it.
Remember, as our best Prez FDR once said, "We have nothing to fear but fear itself"
I could not answer about dairy products in general. I have such a large array of “ stuff “ going on ... it’s hard to say what does what really. You might ask others about it, Nalacrats or tall_allen ... one of those know far more than I .
My psa is holding at undetectable for over a year .... are the 30 supplements helping ? ... I hope so .... for sure the Lupron Xtandi and Zometa are helping. My life is a wreck from the adt. I eat dairy products ... keto helps me lose weight but not everyone.
Shoot ! At 19 seeing dad suffer so must be terrible ? I’m sorry . I will commend you on maybe being one of the youngest to post here. This says much to you being a living and caring person . You ve seen him since 2012 going thru the changes . He must be a great man to produce such a fine daughter . My father also had pc. But I lived far from
Home during that time . He passed from heart issues and I wasn’t there . Love your dad much daily.. This bond is eternal . You are his angel , This is one hec if a life lesson for you at 19 . My hope is the same as your fathers .That you live a long happy healthy life yourself . Take care , and don’t forget the chocolate either. You’re amazing at 19 . Scott .. I’m 58 myself
Thank you so much for your sweet words, I appreciate it a lot. I’m so sorry about your father. When an obstacle comes around, there’s nothing we can do except face it and fight it. Wishing nothing but the best for you!
Dear chocolatelover...please don’t live with the fear..All that you can do is love him. You’re doing that already . You will not get pc . But take care to live very healthy yourself in your dads name. He wishes you no pain in this ordeal ... it’s hard to see him suffer. It’s not going to happen to you ... Take care good daughter ✌️
Thank you for your very informative response! My dad has had radiation to his sacrum metastasis, 5 rounds of it. The pain has decreased significantly and he feels a lot better now. I will talk to him about Metformin, I’ve never actually heard of this drug before. I also don’t think my dad has done gene mapping and I don’t think he’s ever heard of it either, I’ll bring this up to him as well. His team is okay, the only downfall that my dad complains about is that they do things very slowly and not as quick as they should. It took months for them to consider and do scans and tests even when my dad complained about the bone pain. I don’t really know much about his team honestly, he keeps everything to himself a lot and doesn’t talk much about all of this. But I do my best to try and help him. Thanks for all the new info, hope all is well with you!
Nalakrats has very good and sound advice. He is one of the few that I count on for inputs ever since my diagnosis. Don't let fear overwhelmed you. Take one step at a time and if possible to go with your dad to the doctor appointment. You may help your dad to ask some of the question too...God bless
Choc lover - I’m sorry that you’re going through this. I have teenage boys. I know it may be little consolation, but I’m sure he shares your same fears. He wants the best for you. You’re a good kid. Hang in there.
Hi chocolatelover_123, what's your favorite choco? Mine is 100% Organic Cacao Nibs and powder. Eat the nibs straight up. Really like the powder added into the Curry Powder mixture I make.
BTW, another Gleason 10 here at 5+ years and my doc has me on 1700mg/day of Metformin along with Avodart. My diet for decades has been what many men change their diet to when told they should eat healthier. Didn't stop me from getting the cancer -- :0( -- but allows me to continue bicycling 100+ mile rides a few times a week as I approach my 70th birthday.
Please "keep on - keeping on" AND as difficult as it might be, do not misplace your sense of humor. You're a wonderful daughter and my best to YOU, your Dad/Family.
My favourite chocolate would just be a simple milk chocolate of any sort haha. Happy early birthday! Keep fighting, hope nothing but the best for you and your family!
Such a sweet boy you are! You remind me of my 17yo son who is also scared for his dad and my husband now at 45yo with stage 4pca gleason 9. 7yrs with gleason 10 is an achievement! Your dad is strong and very lucky to have you. Its ok to be sad and worried sometimes but please know that your dad can fight this with your help, your family and his team of doctors. And yes agree 100% with metformin! Very good for diabetes and pca. Discuss with your dad and his medical team. Dont believe in survival stats because everybody is different. And most important of all, spend and enjoy more time with your dad. All the best on your dad’s journey.
Haha my dad has two daughters, I am the youngest daughter ☺️ I will check on metformin! Thank you for your advice and kind words, I hope your family is doing well!
My husband is Gleason 9 with mets to bones- You've gotten a lot of great advice here! My husband decided to become a strict plant based vegan when he was diagnosed (keeping track of his blood numbers fir deficiencies along the way). It has been 2.5 years and he has added in fish but no meat, dairy or eggs. No matter how it is on his cancer- it helped him feel good as well as feel in control of something. You can see my husband's treatments (I need to update) in my profile. Latest scans show shrinking of tumors and even no evidence of active disease in bones even though PSA has not gone below 8 (started over 677). He feels good!
We have three kids (my husband is 52). They are 21, 19, and 17. My daughter is the 19 year old- she has been helped immensely by therapy. I don't think many realize how much it affects kids who are old enough to comprehend and fear the future. Especially at an age where you don't have your own children etc to focus on your future with. I'm trying to talk my boys in to it- because she has felt so much less anxious and has been able to focus on now and herself (as you mostly should) more. I do a lot of research- sending our kids all of the promising advances in treating advanced prostate cancer and being open about his treatments so they feel included.
Your father is so lucky to have you- my advice is to be sure to find someone YOU can talk to. This can be a neverending bottomless research. If you can, having a therapist or counselor to talk to will help you ❤
So happy to hear that your husband’s tumours are shrinking! He has a lot of dedication and effort into his health, congrats! These things do affect children a lot and even though it is not physically happening to us, it takes a huge mental toll. I hope to seek counselling from my university as it is free! Thank you for your support, you and your family take care ❤️
I have nothing to add to the excellent advice above, chocolatelover (me too). Praying for your father to remain comfortable, and for you to remain strong for him. Keep on keeping on!
Hello DarkChocolatelover_123 You're a smart young lady... Your Dad is lucky to have such a devoted and loving 19 year old daughter. Don't be scared cause your Dad will see you get your doctorate, marry and have smart little brats who he will spoil....Enjoy your Dad every day and try to laugh as much as you can... Keep posting here and give our regards to your Dad. Remember tomorrow is Valentines day...
Your great concern for your father is very touching. I have 3 boys, ages 13,15 and 17 and wonder how they will react when things begin getting significantly worse for me.
As your concern is for your father, my concern is for my kids. Of course, I expect they will be hurting when things turn worse for me, but my hope is they will be able to “compartmentalize” and enjoy their lives and continue on ahead in their journeys, without me being any kind of a burden to them. That would be the best medicine for me.
So, while I understand and appreciate your love and concern for your father, and think it is wonderful that you are doing what you can to help him, I suggest, that while you do that, you try your best to continue living your life to the fullest and enjoying it, as best you can.
We do not know what the future brings. My heart goes out to you. This is a lot to deal with at 19 especially I know it’s easier said than done but crying every day and worrying so much about the future try not to miss the present that you do have. Continue being the best advocate you can be for your father helping navigate this journey. While it is difficult there are new treatments and discoveries being found every day that your father may benefit from. Keeping your and his spirits up does go a long way to improving your quality of life and fighting disease of any kind. My husband (72) is dealing with metastatic PC cancer as well. Worrying about what May or “may not” be in the future steals your joys of the present. Wishing you and your father many years of joy in spite of his illness.
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my prayers are with you!
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