I thought I was carrying it with dignity. But since the trend of my PSA has changed the trend and has gone from going down in each reading to rise, not very fast, my thoughts are getting out of control. Entering a loop of negativity and worry.
I'm on my first treatment with Zytiga. I try to think that there are more lines to work on. But negativity is coming to me.
Stay strong and know that we all live on the edge of hope that falls into the percentage of survivor. It is a prostate cancer roller coaster ride, hang on!
At the beginning, 3 am thoughts were the worst. I found that Relora before bed helped. It does have an effect on cortisol (the stress hormone) [1].
Very likely, unwanted thoughts will diminish with time. It takes time to come to terms with the new reality of a serious disease.
Best, -Patrick
[1] ncbi.nlm.nih.gov/pubmed/239...
Very good!
As always a fountain of knowledge. Sounds like we should all be eating trees for breakfast. Taxotere is from yew tree. Yep. Saw dust for breakfast. There was a guy back in the day who people laughed at and claimed he advocated eating trees. Started with an E -- damned lupron. A prophet in his own time.
Hippocrates wrote about using willow bark for headaches & fevers. Some years later, salicylic acid was isolated & aspirin appeared on the shelves. No studies; no FDA approval & an apalling safety record. Some still prefer the original:
ship.kroger.com/p/033674178...
Best, -Patrick
Euell Gibbons, ya ever eat a pine tree?
Excellent sir. How could I forget? Easy. I am taking some very frightening drugs. Someone here said it best (I forgot who -- come forward and identify yourself) "it was right on the tip of my tongue". Almost two years of lupron and it is getting worse. I apologize to friends and say sorry, its the drugs i'm on and they fill in the words. It is getting worse. Is it reversible? The prostate cancer maze becomes a spider web.
Sounds like you are a human being responding to negative information about your health. I'd be more worried about you if you were not worried. That said, most of us here see you as a mirror of ourselves when we had/have rising psa's. Please know that your feelings are valid and appropriate. As RickW mentions, prostate cancer is a roller coaster ride. Ups and downs, etc. As long as you don't "act out," you'll be fine...even though the present for you certainly feels like it sucks. This too will pass.
The golden words are : This too will pass.
Thanks, Darryl.
and so will we....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 12/19/2018 11:06 PM EST
Besides prayers for strength, I find reasons to fight on. Who depends on me, I want to see all my grandchildren, stuff like that.
I also take a supplement that seems to really help, SamE.
Sam-e for six months has helped moods a lot. Also it has dampened neuropathy and misleading pains .
I know that it can help in many situations - but, unfortunately, SAM (SAMe) is the universal methyl donor in the body. PCa sucks it up. Hypermethylation suppresses the promoter regions for tumor suppressor genes. Oh well!
-Patrick
Well said! Upon diagnosis, I found out I have hypermethyalated PTEN
What is it?
I have much respect for you.... I will address this to my Nat Dr..and get back with you.. he is . Dr Michael UZick.. Genesis Med .. I trust him
completely but if true what you say . I’ll gave a decision to make . Peace and good times to you.. Thanks..
Said a prayer for you...good luck...my faith sustains me, and the support of my wonderful sweetheart, Rita..
I'm new to this too...some melatonin helped me....it's overwhelming....you think about your plans, dreams, and life....My faith in God sustains me and my wife....take hope in the multiple drug trials for blocking wild/ mutated AR which may resolve hormone treatment resistance, multiple vaccine trials, the NCI Match trial which will revolutionize cancer treatment, STAMPEDE continues, the huge increase in government funding for this...great research centers like MSK, MD Anderson, Cleveland Clinic, and so many more... and this forum which gives us an opportunity to share our knowledge, feelings, experiences... Hang tough, my friend..... there is still hope...
I admire your faith.. Trust in God..
Thank you.....wish I were a better Christian, but I strive to improve daily....what else can I do??
Nobody is any better than anyone else. We’re all sinners .. That’s all any of us can do.. Day by day.. smells the flowers along the way.. hope the fishin is good for you..
Indeed....sinners all....I do have some talent when it comes to fishing...Thanks.... Merry Christmas...
Thank you very much everyone for the advice and support. Difficult situation that we all live. Accustomed to solve my problems and, in many cases, those of others. At this moment he feels great impotence for being subjected to the readings of an analytic that transforms everything.
Learning every day, but sometimes tripping over ghosts.
Thank you
Most Cancer centers have Quality of Life departments where you can talk with experienced counselor, They also usually have an MD who can recommend medications to help. often at no cost. I go once a month and it does help. You can also get guidance on nutrition and exercise. Being down and then up and then down again is part of the aPc battle. But if you go down and don’t come up then it’s time to get help.
Hard not to be in our situation. But...you just started zytiga. Give it time to work.
The Blood will protect you GatorMan
Find infinity in an hour. Your fate is no different than any other mortal. There is joy to be sought out in this moment. Seize the day by seeking what brings you happiness no matter how forced that effort may now be. Tomorrow doesn't really exist; don't allow it to steal this day.
Right on! Jvo
Late in the middle of the night is the worst for me, once I get up I drink coffee and then my troubles seem better.
Larry E
Breathe. Just one breathe at a time. Focus on that one breathe. Hold it and then let it out slow. Feel the air going in and filling your lungs. Linger in the moment. Keep breathing. Smile in between. Breathe.
I learned to practice Mindfulness. It takes about 3 months of daily practice until it becomes a habit of being. You can do it yourself, but I recommend classes - it is easier in a group. Instead of trying to get rid of the thoughts racing through your head (avoidance), it teaches you how to do the opposite - you become more aware of what's been going through your head. By becoming aware of it sooner, it never gets a chance to dominate, and vanishes sooner. You learn to observe the thoughts and feelings attached to them more objectively and to examine them closely. Objectivity arises when you learn to bring your attention to your body (e.g., by noticing your breathing) instead of your head. The way to get over them is to go THROUGH them, not to avoid them.
Totally agree. Mindfulness is awesome! I tend to lay in bed for quite a while when I wake up and my mind always goes to the uncertainty regarding my future. Now I put on the breaks to that kind of useless thinking by launching my Breathe app on my iPhone and run through a few mindfulness exercises. Good stuff!
I swim laps, and swim some more.
Stay strong! I find helpful reminding myself every day of the great things I am grateful for in this life.
I agree with every single comment people wrote here. I have my moments...today I started crying 3 times. I feel better after. Yet, like all here, we have to fight. We are still alive and have living to do. There are some exciting clinical trials out there right now. I keep in mind what my doctor at the Mayo clinic told me. "You are just one breakthrough away from not having to worry about dying from prostate cancer."
For me I think Gratitude is important to reducing negative thoughts...Gratitude it puts life in perspective. Since my diagnosis I now appreciate the smaller joys in life, I’ve come to cherish the past, live in the present but appreciate the future experience that I will have with my family and friends.
Hey joancarles, youre not alone in this.. Comes hand in hand with treatments and a deadly disease. This is your hormones getting screwed with. Emotional, psychological warfare with self not to mention constant threat of death. Don’t give into fear. Pc feeds on our negative emotions. I think given time your PSA will come down..Sam-e is cheap and helps moods. Before bed 20 mg melatonin and 4.5 mg naltrexone..both c fighters. I’m not selling snake oil but if I were you and you haven’t already held consul with a naturalpathic onocologist to help plan nutritions and alt methods.. That is what I’ve done. Not for everyone ..Our life’s are on the line 24/7 . I believe we should all live a high alkaline diet and no sugar.. for any cancer. Diet is crucial.. maybe not for many on this website but go to others and fight c not just with western med.. APC ain’t no cake walk. It is a grind that we must try to turn into sunshine.. The loop of negativity surely can always be there. Youre at the beginning and in my opinion the worst stage of unknown.. Fresh ginger , turmeric even cayenne . There are tons of nutrients that build immunity and that might aid you success. Baking soda & molasses... do anything to help heal and improve . Let that Zytiga work buddy. I put Pharrell “ happy” on then “ don’t worry, be happy, “ , blue skies , dancin in the rain, and pray pray pray for mercy and health. Hang in there baby... You’re going to live a long time.. believe it...peace...
I am a researcher, working on palaeontology. have masses that I still want to do at that. I take it one project/paper at a time, so that it is manageable, and look forward to the next one. I find that sustains me. Can you perhaps cut your life into little chunks in the same way, and use the passing of each one to sustain you?
Thank you very much everyone for your words and advice. We will continue fighting
My doctor put me on Effexor to help with the depression, but found after a friend gave me a little dog that she is my greatest comfort. I stay as busy as I can but that only gets so far. Good luck to you on your fight with the monster. 🙏🙏🙏🙏
May Hashem give you great results !
Last year this time i was a mess. I lost most of the sight in one eye, my pca came back to see me and because of the job i have ill lose my job when i go for my tri-annual physical because of my eye.
Finally i went to a counseler and talked about things and learned how to cope with my thoughts. Since seeing her, about 4-5 times i can cintrol my thoughts and put the negitivity on the back burner. Oh they are there and want to surface but im able to deal with the bad thoughts a lot better.
Fast foward to today, i have been approved for dissability which was a big load off my shoulders. Im going into xmas and the new year with a better sense of being then last year. I do take effexor for depression. All this is part of the new normal we have to live with so i now try to make the best of it. Have bad days for sure but i feel better now then last year. Merry Christmas!
Yeah. Remember my annual physical and dealing with high blood pressure issue. Very stressful -- and raised my blood pressure. Don't know how people deal with working and cancer at the same time. Guessing you are about 60 now -- time to relax as much as you can. Congrats on the disability approval. You earned it -- the hard way.
The Boss has cancelled my transfer to Headquarters for bad behavior, and Satan, the prick, has taken out a restraining order against me, so I'm stuck here annoying anyone and everyone and living it to the full!! Farm sitting at the moment, and a bore that waters 500 sheep has shit itself, so I'll be lifting the pump tomorrow and repairing it.
I don't know where my brain is at, half the time, usually not home at any rate, but keeping active (if kinda forgetful) seems to be a remedy that works for me. 3 am brain wanders still happen from time to time, but getting straight out of bed and having a hot chocolate seems to help heaps. I find if I lay there I get much worse. My little angel, who doesn't deserve some of the crap I put her through, always seems to sense if I'm toughing it, and spends her much needed sleep time talking to me about anything and everything to help take my mind off things. God bless her!!
Remember that we are going through some weird times with missing hormones, and strange drugs being pumped through our bodies, so it will be completely natural for the head to visit some strange and unwanted places.
If you can accept that these places and thoughts are a part of our treatment, and "roll with the punches" so to speak, it gets a lot easier.
I often find myself reading posts on this site late at night (or early in the morning) and realising that in the scheme of things I'm doing sorta OK.
Chin up cobber, take a deep breath, and stay strong!!
All the best
Thevvy
Well said, thevvy!
I made the mistake of telling my oncologist about my dark clouds and he said he was thinking about putting me on a 72 hr psych hold . Worked through it with him.
It is hard to carry something like this you have been told will never go away.
Oh my god! Thrown in jail for having prostate cancer. Next time I see my oink oink i will be sure to smile and dance a jig.
The next time I have dark clouds I might light up a joint and blow clouds. I'm lucky to be in a medical marijuana state here in the US. Years ago I voted to legalize and it just squeaked through. My thinking then was that I might benefit from it some day. Too bad I had to get this disease in order to partake.
What an important and wonderful subject to resurface. We all know your feelings and anxiety and all of the replies are heartfelt from people who know first hand how to keep on living. Life over fear!
Close your eyes and breathe, your alive today. If there is know pain, don’t drive your self insane, you have tomorrow to look forward to. In tomorrow there is hope. Hope, that the cure will be there, Hope that dreams can and will come tru, hope that you see all the ones you love, and all the ones that love you.
FUCK THIS Cancer don’t let it get to you. It ain’t nothing but another thing. I live with cancer. I’m not going to die from it
It was tough at first, but I used tools from my AA program to get me through. We only have today, appreciate what we have, one day at a time. Asking my higher power for guidance, talking to friends, and helping others are tools that keep me more upbeat. I had to go back on anti-anxiety meds (Bupropion), which was also a big help, as well as Trazadone to help me sleep. When my PSA started creeping up after Chemo and Luprone, I started on Xyandi a year age , and PSA went down right away. Zytega should do the same for you. I chose Xtandi because it is easier to take (no steroids, and any time of day, just 4 big, expensive pills every day st 5 pm. Hang in there, it is natural to feel down, but we’re here today, right ? 😄
My husband will be celebrating 45 years of sobriety in a few weeks. AA and the fellowship have been a great help in the past year. He now has a PCa sponsor! Yup- a fellow traveler on the Road of Happy Destiny who had PCa, though not as advanced. Keep trudging!
I know there are brothers here who bridle at this, but when the 3 a.m. horrors strike, I sometimes toke up. An indica strain of marijuana delivered with two or three pulls on a vape device is unobtrusive and lightly befuddling -- just enough to calm the darker recesses of your head. It helps to live in a "legal" state (I'm in Colorado) or, maybe, put the arm on some grandchildren. It's also true that your fears are legitimate, but so are your hopes.
Joancarles, thank you for this post. It got a lot of response because all of us here empathize with the dark thoughts we all have. Prayers, mindfulness, work, medication, etc., it all works. Just find the one that works for you.
What helped me be strong was twofold. Firstly, my wife was the first to have the dark thoughts with lots of sleepless nights. She couldn't deal with the fact that I may go first. Especially, when we made a pact that she would go first so she wouldn't have to suffer losing me. Nice deal, huh? Anyway, I would have to "talk her off the ledge" and convince her that I am not going away anytime soon. The treatments are excellent and help us live longer. Plus all that is coming out of "Stampede" keep us all hopeful. This convincing her helped me stay strong. Believe me though, I had dark thoughts from time to time as will but I kept up with the mantra that I was going to beat this thing.
The second thing that kept me strong was that I would also have to convince her that my strength is in my faith that God has this disease in his hands. She had a battle with her faith during that time. Rightfully so, when the God she prayed to was about to take the love of her life away. Now, I tell her my last two scans showed no evidence of cancer anywhere in my body. This after I was diagnosed in July of 2016. Both the treatments and God are working well for me.
STAY STRONG!
Craig
That's exactly what we like to hear: no evidence of cancer. I only have myself to convince. And I'm convinced I left a shaker of salt around here somewhere.
My husband and I are going through this now too. I always said I wanted to go first because I don’t want to be here without him. Four years ago I was dealing with breast cancer and he was afraid of losing me but I survived. Knowing he’s at Stage 4 is scarier than my cancer. He’s been my rock and now I want to be the strong one for him. He’s convinced he only has a couple of years but I like one of the comments that “you’re just a breakthrough away from not worrying about dying of cancer”. That will be my mantra. All the best to you and your wife.
So, after my initial diagnosis and shock I decided that I had a lot to live for and I would not let this cancer have control over my physical and mental state.
So, with each treatment decision I have made the most aggressive decision possible consistent with emerging results from clinical trials.
During surgery, two rounds of radiation, chemotherapy and 18 months of ADT I have continued to work, exercise, travel and do things I like to do. Obviously there were times I was limited, can’t take vacations during radiation...
The 2nd thing I’ve done is stop thinking of life expectancy in terms of 10-15 years plus. I now think in five year increments when discussing treatments with my medical team...will this treatment work for the next five years, knowing that advances in imaging and treatments will be available to get me through the next five years.
Finally, I just look around at folks in Houston, Paradise, CA, Panama City, FL and think well, could be worse. A good friend of mine just passed, diagnosed with advanced liver cancer, untreatable, from diagnosis to death, three weeks. He died too young and unlike I, never had the chance to fight his cancer...
It’s all about attitude...
I have a basically optimistic nature and a stoic philosophy - "what is, is and you just have to deal with it." Also I've tolerated my treatment program a lot better than a lot of my brothers here. So I really haven't had any bad times, even though the quacks have thrown in the sponge. I haven't quit. All I can recommend is concentrate on the parts that don't hurt - those positives in your life. A loving family, a beautiful sunrise, the birdies flocking around the feeders in the back yard.
This probably isn't much help, but remember all your brothers here are sending out their prayers and support for you. Hang in there, bro!
Stay strong - you are not alone!
PSA blood draw in two days. It is always going to be stressful waiting for the results.
I started doing Tai Chi a while ago. If I wake up at night with negative thoughts, I start doing Tai Chi in my imagination. I soon fall asleep.
What a wonderful post and what great replies. Shows just how concerned everyone is about this subject. Enhanced emotions on ADT doesn't help either!
Exercise, heart diet and prayer help me a bunch. Everyone have a great Christmas!
You are not alone, I am in the same boat,I did 15 months on zitiga,# started to climb, I had my third jevtana today ,after the first went from 24 to20,I felt good, after second went to 26 my world came down. Asked for the dr.he came right in,told me to take it easy, did not make for a good Christmas
This last Spring when I was taking a high mixed dose of clinical trial ADT, I had experienced many emotional roller-coaster rides. There were times, tears would pour like rain w/o me understanding why. It was really strange.
My biggest free-fall, was 'the' evening I started back on Zytiga after a 10 day respite. (The docs needed to get BP back down by supplementing with BP medicines.) I was alone that evening, and I felt I should let it all out. I Spotified the blues, got on my elliptical machine, and paced myself on it for the longest time. Singing.... yes, and loud. Screaming out at times. Once exhausted on the elliptical, moved over to light dumbbells. Many many sets, going more for endurance than anything. Eventually, I had to rest. I can tell you, I felt every lyric in every song I played, as if I experienced and written the songs myself.
Guess my main point is, don't fight it. Let your emotions flow. Most definitely use exercise (don't sit and be complacent) to work out any anxiety. Most importantly, "Know" this isn't you! Know that it's the ADT within, that is making you like this. My way to see this, is to virtually step outside yourself and look back at yourself. Sounds strange, but it does enlighten you as to what's going on.
Best of Spirits, to all that go through this.
I masterbate....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 12/19/2018 11:15 PM EST
My wife joined me up for a bridge club....I’m jumping off next Tuesday!
When's the "best" time to do the scan?
Thoughts on BAT
How do you deal with a Partner that is threatened by you illness?
Bone scan. Thoughts?
