just got my advanced prostate cancer with bone(pelvic) and some lymph involvement a few months ago(I'm 60 y.o.)...and started Lupron a little over two months ago. It's NOT a party. I'm such an "up" person...but I now realize that a lot of what makes a person who they are IS controlled by hormones (or lack of). I was diagnosed with Prostate Cancer at 57...I was Gleason 6 and supposed to be almost NO chance of spread or aggressive. I did 42 radiation sessions....and afterwards my PSA NEVER got below 2.0....then it quickly went to 26. More Pet Scans...and a biopsy. NOTHING was found in the Pet Scan...but Gleason 7 in the prostate. I had HIFU (High Intensity Focused Ultrasound). at University of Miami. ** $20,000 out of pocket as it was just approved by the FDA and not covered by any insurance as of November of last year. My PSA after the HIfU...did not go down. It went up. Then I had the NEW just approved Pet Scan that's better at detecting Prostate Cancer...and ALAS...it was in several places in the pelvis and also several lymph nodes in the groin area. NOT good news. A biopsy of the prostate showed that the HIFU had indeed gotten rid of the cancer IN the prostate, but it had spread. I did Casodex and then one month shot of Lupron. Then I switched back to University of Miami...and NOW am going with a newer protocol of Lupron (they gave me a 3 month shot which is hitting hard) and I will be starting Taxotere(Chemo) next month when I return from a monthlong holiday that was planned a year ago. I don't have a lot of energy for the holiday, but I am hoping the new scenery will help me pull energy from somewhere. And the whole time being on holiday...I'll know I will be beginning 6 sessions of the Chemo when I return. I'm hearing good things about "hitting it hard" with Lupron and the Chemo in the very beginning. I just hope the "day by day" gets easier. I feel blessed that I do not work...I do feel a bit "forgotten" by "friends". I have a partner of 40 years...and he's great. But it's me and him against the world(Cancer). AND he had prostate cancer almost 7 years ago...did radiation and he is still doing GREAT. So it's truly a "different ride" for everyone. He was a Gleason 7 before radiation...so his prognosis was not as good as mine. Doing some Cannabis oil daily...trying to eat more veggies and lean meats...exercising (with no energy) still 3 to 4 times a week at the gym and walking the dog twice a day for a combined 3 mile walk every day. Living each day and enjoying "one day at a time" and trying to remember to count my blessings....AND I am hoping for a Miracle ! ! ! Life is Beautiful.
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John, I'm glad you're hitting it hard. You're right the literature on that is good. You may wish to speak with your doctor about antidepressants. ADT does a real number on us. Cymbalta helps take the edge off for me.
I'm going to hold off on anti-depressants...I wouldn't say I'm actually depressed...I'm just more like "drained and unplugged"...which makes me feel challenged to do things...even fun things! It's definitely a journey with a lot of uphill and winding paths ! I think this sight might help just to hear other people's stories and feel like I'm not alone. Thanks again!
John, You will get plenty of support, advice and encouragement here. I just had my second Lupron shot and will be adding Zytiga next week. My onco believes "hitting it hard" is the new path forward, and the combo of Lupron + Zytiga is showing quite good results. Yes, the side effects are unpleasant but better to be alive and aware of what's happening. A positive attitude is really the key, though some days make it hard to see "silver linings." I know it's a cliche, but living day to day and taking time to really be "in the moment" is quite enhancing. I honestly think I've become a better person because of this disease. Hey, my partner thinks so too. We find that affection can be expressed in so many ways, not just through the physical side. Enjoy that vacation! You got plenty of men cheering you on.
Welcome to the group! You have a lot of great brothers and friends here that will never forget you! We are all counting our blessings!
It sounds like your treatment plan is a sound one. There is more and more studies showing a multi prong attack is the way to go. Good luck!
You are right, the side effects of Lupron suck. It is important to know that it is the drugs and not you. You are doing the best things possible to minimize them, working out even when you are tired, walking the dog and watching what you eat. If the side effects become to much, please talk to your doctor. I read a study where hormonal therapy was harder than surgery, chemo or radiation for men to deal with.
It is great that you are going on vacation. Please enjoy it and do the things you love, even if it is at a slower pace.
I am one of the ones who hit it early and hard, although I started off much worse than you are in from the sounds of it. I have extensive bone mets, diagnosed with stage 4 at the end of February of this year. My PSA was 463 and Alkaline Phosphatase was 605 (normal range max is 117). I started on Lupron in early March, followed by 6 cycles of Taxotere chemo beginning in April. I just finished chemo last week. My PSA is now .2 !!!!
I wouldn't call it a picnic, but doing early chemo is well worth the potential benefit and I would do it again if I had to do it all over again. Most people tolerate the side effects well. Typically the younger you are, the better you tolerate it. There are lots of us "chemo veterans" to help you through and give you encouragement and support. Hope you stay tuned to this channel.
Since you are already a cannabis oil user you are probably familiar with the benefits of medical marijuana. I find it works well for depression and has minimal side effects.
Sorry you have to be in this club, but we all know what it's like to go through this so we can help.
Try not to think about it on your vacation. Easier said than done I know, but it's really not something that's worthy of any level of worry. Just have to take one step at a time. One of the things I'm learning in this journey is to live in the present, each day to the fullest, one at a time.
Most of my time on chemo, I felt fine.
The first week after infusion you feel crappy, like you are coming down with something. But then, you get better quickly. Usually the second week you are quickly getting back to normal and by the third week you are back to normal and can pretty much do whatever you want.
I am smoking cannabis to get rid of side effects from the Lupron and casodex, it seems to taking most of the side effects away, I wish I knew more about doing cannabis oil ,I did take it for 2 months after I was diagnosed with Pcancer ,nothing else. I had a date for surgery but got a lot panic attacks, so I change for radiation treatments but the doctor said I needed to do the Hormone treatment first and then radiation treatments for 8 weeks. I did read that doing it this way was more effective then just the radiation treatments. I just joined the club last night. it is great to have some place where Pcancer patients can exchange their knowledge.
Early chemo with Lupron will definitely help you to get the bull by its horns. Gain more energy for your body to tolerate aggressive treatments. Have no mercy on the beast. Hit as hard as possible.
Thanks. I will be almost 4 months on Lupron when I begin the Chemo in the end of September...as we were waiting until this holiday was over. I'm hoping that this is good timing to "kick it hard".
Thanks! I was hoping that this planned holiday wasn't a bad thing. I really need it ! I will be at 4 months ...so I'll be in that "window" you mention.
My husband just finished his 6th and final cycle of Taxotere. He started Lupron in March and chemo in April. He's 57 and worked all the way through it without missing a day. Not everyone is that lucky, but it was helpful to us to know going in that the SE's can be VERY manageable for some men. Drink LOTS of water the day before, day of and day after each infusion. Do whatever else you can to stay physically strong (diet, exercise) and whatever you need to do to keep a positive outlook...everyone has their own approach to that. Good luck!
John, like Gregg said, hit it hard. I had almost similar #s like Gregg. I am 52 and was diagnosed March of this year so hit that "sucka" hard. I finished my 6th cycle last month and I feel great with lots of energy. The bone pains in my thighs, hips and pelvic have substantially diminished. Fatigue was the biggest side effect for me but I overcame it with walking, bike riding and light stretches. Eat healthy foods from here on and I believe you will do well with chemo. Enjoy your vacation. Keep us posted.
Understand. I was diagnosed with Prostate Cancer in 2002. Seed implants - ALL good till 2008. My wife of 34 years, Rande, and friends gave me a party after 5 years cancer free. Then PSA started rising, again. They gave me a bone scan, cat scan, biopsy under anesthesia 28 needles...found NOTHING!! ALL good. Slow PSA growth...then in Oct, 2014. PSA 1,314 (Not a typo). Stage 4 Prostate Cancer of the blood. Cancer spread to my chest cavity, scapula, and pelvis. Lupron AND 6 rounds of Chemo AND Prednizone @ NYU Langone in NYC. PSA - by June, 2015 down to zero. Another bone scan and cat scan showed NO cancer. Oncologist took me off Lupron. Still have Xgeva shot every 3 months. Then PSA started rising slowly, again. Went from zero to 5 to 25 to 60 to 247. Back on Lupron...PSA going lower, again. Bone scan, cat scan in Oct. The journey continues...day by day.
By the way, I told my Oncologist that I have smoked POT for over 50 years. (I'm 72). He gave me a cat scan of my chest...came back unremarkable...which, as you know, is good in medical terms. Got the two scripts for nausea durning Chemo. Never took them. Smoked POT for pain and for MOOD uplifter. I exercise - walk, gym, something - every day!! Found that moving a muscle...changes my thought.
Glad you have a partner to share the journey with you. Stay strong, John. Good health and be well, Rocket Rob
My personal experience with Lupron is that the 3 and 4 month injections cause more intense side effects in the month or so after the injection. I do not believe that the drug releases evenly through it's lifetime. When I went on monthly injections, the majority of the side effects ( hot flashes, fatigue, etc.) were greatly diminished.
well...being someone with a fairly high IQ...the FIRST thing I asked the doctor that wanted me to do the 3 month shot was "is it as effective and how do the side affects weigh out." I told him that I had no problem with coming in Monthly if it was only significantly better for maintaining "castration" or if was even slightly more easy on my body. He insisted that there was NO difference. I don't think that they pay enough attention to "issues" some times....Or some men down play the issues because they want to appear "strong". I am going to re-open the monthly shots with him when I come back from my holiday. THANKS for your input.
Have you heard anything back from your doc? In the same vein as what Clint said, I decided to do injections monthly, and I personally feel I tolerate it better. I also stopped working and time is not an issue, and I even do it myself which makes it easy all around. And even though I far from want to cheer about having undetectable testosterone (another complete issue), the goal is that it works, and for me with less intense adverse event swings.
♪♪♪♪♪♪ V-A ♪ C-A ♪ T-I-O-N♪ GONNA HAVE A BALL ♪♪♪♪♪♪
Good Luck and Good Health to you and yours.
j-o-h-n Friday 08/18/2017 2:51 PM EST
You don't need a miracle, you simply need to adapt to your new life. You had one life before you were diagnosed, now you are starting a second life. Chemo is a breeze, my worst damage was the hair on my armpits not growing back. Now when the police tell me to raise my arms they start laughing. I used to be able to go on a daily run and knock off 8-10 miles. Now because of Lupron, I cut it down to 4-6 miles. Oh well. I also lost 25% of my upper body strength. Again, oh well. I changed my diet because most articles I researched said to do so.
You are still getting started, don't freak out, it's a long, long road ahead. Start planning your 2027 world tour while prices are still low. Key thought to keep in your mind, "my life is different, adapt.". You have a long way to go.
Hey John, Welcome to the group, sorry you're having to join. I like Greg, was diagnosed stage IV with extensive bone mets (age 49). I think you're doing the best for yourself with your treatment plan. Chemo was no fun at all, but now that I'm finished (2 months ago) I actually feel great. With a low burden of disease, you should do very well. Keep positive and I'm sure you'll get your zest for life back, I did. Cheers Paul.
How long did it take for you to fully recover after the 6th cycle? I went 4 weeks between my 5th and 6th and still didn't feel completely recovered after the 4 weeks were up. I'm at 2 weeks out from the 6th today and still don't have much energy.
Hey Gregg, It took a good 4 weeks till I started feeling OK. I still didn't enjoy my food 3 weeks after round 6, but it slowly got better. I'm now 8 weeks out and I feel the best I've felt since starting the chemo.
I'm just getting back to reading all of these...THANKS! I start my chemo in the morning...(been on the Lupron for almost 4 months now). Preparing for the worst...but hoping for the best.
You have someone that loves and understands from experience what you are going through.Thats a blessing.. Most for us going thru treatments for APC go thru the same conditions and side effects to different degrees.Try to keep sane and happy , stop anger ..I be been under APC for 2 yrs..currently no signs but on test ADT drug did orchiectomy a yr ago so I have all of the ADT side effects .Worst for me moods swings and depression. Exercise is crucial, even when we fell like rolling up,in a ball and crying .. Oh yes ,you will get in touch with your fem. side ...Even if you where the machoest guy around without T everything changes .. Not all female traits are bad, compassion, caring , loving ,maybe even be a better cook ,who knows?The point is you will have to adapt..easy? No way ..life test? Surely ! Ego ,the past ,worrying about what bad things could happen, all must go to keep you in a healing state of mind .. I too don't want anti-depressents.Been on all naturalpathic remedies and Rick Simpson canaby oil for 2yrs also. Recently started Daily " Sana" Cbd's off amazon ,totally legal ,no high ,but I'm feeling this is helping muscle and joint paint alone with calming my mood. Good luck to you and your partner ..Love each other and stay in touch ..✌️
wow ...THANKS...I'm reading on here because I'm killing time (starving) before my first Chemo session tomorrow. I researched and decided to fast for 36 hours or so before and the day of...they say it helps with efficacy and side effects. Your story sounds like you've had a rocky road...hope you have a nice long path of smooth surface to walk on your journey for a long time! ~~John
I got so spacey and went from 220 to 165 wile fasting during 2 out of 5 days a week of rt. I blacked out a few times I was very week and dizzy. So maybe those cells where weakened and eliminated more effectively In That weakened state. 2 -500 calorie days per weak and of course a lot of water God bless you to get over this mountain that you’re climbing and to get to place where you have some assembence of normality and quality of life ..We choose to fight and live. Nothing Easy about any of this. Good luck brother. You can do whatever is called upon you to do to survive. Awesome, and yes, gruesome ...this is our path..
I sometimes make bone broth...we were looking at the organic bone broth at Costco...today. How funny. I bought their regular organic chicken broth. I did well with just that and a couple of 4 ounce glasses of fat free milk. that's all I ate for the two days. I'll try the same again. I did eat the night of my chemo...but I went the whole day so it was almost 3 days of fasting. This is a big thing...because FOOD is my favorite thing in the world! Trying to make a little sacrifice..more for the "spiritual" aspect than for anything else. Belief can nurture Miracles!
I’m a foodie Also. But this is life or death for us. Live to eat , or eat to live. I’m proud of you. If you like carrot juice , a cold glass will cool your stomach .Luckily I have not done chemo yet nor do any of us really really yearn to do so. Your good attitude can see you through ... Good luck with these blasted treatments.
just wait. All the rules change. I was told I could NOT eat ANY fruit juice or fresh fruit. NO raw vegetables...and very few high fiber vegetables....and NO high fiber. So carrot juice which I used to like with orange juice mixed...is OUT. As is all "healthy" sounding things. I am supposed to eat a high protein diet..with added dairy, milk, cheese and butter to everything I can. Things that are "good" at some times in our life...suddenly become "bad" at other times in our lives. It's a crazy, topsy turvy world for me right now. Last night's dinner was poached Cod, shrimp and clams in a white sauce with spaghetti. It was delicious. NO Salad, NO side of veggies...NO whole grain bread.
Fruit juices are super high in sugar. Natural paths believe in a plant based diet with little or no animal proteins including dairy. You can do just about anything if it’s just once in awhile. Our worlds and chemistry are upside down . I love ice cream and sweets. No more for me. Occasionally like on a holiday ,Then back to the basics. If you do cut all refined sugar and processed food out .You will lose fat on your body ..I’m no guru. I don’t have the answers. You tailor your diet to your needs .Why no high fiber veggie or salads?Haven’t heard that before? I lived that high protein weight lifter type diet but never really ate much salads or fresh veggies. now after 21/2 yrs of a natural diet I feel bad when and if I eat badly .Our chemistries are not like a normal (PC) free dude any more .I love seafood. I remember being on bourbon street in n’ Arlen’s. And slamming down a dozen oysters and along with mucho alcohol ..Now I will drink on New Year’s Eve some fine ass scotch with a compadre. During the rest of the year none. If you put good things only in ,you will feel better in time. Of coarse now in Chemo is a rough time do do anything.You need to eat healthy ..Or not. We are all on our own path. We have more in common you and I Then the rest of the population without (PC). I know where you are coming from brother. Everybody will tell you something different and how you should live . But it only really matters what you think and what you choose to follow . You can and will do what you have to do. At some point when you hopefully get some great results from treatments, you will get some respit. For now , it’s a form of hell not really knowing anything.. or what’s going to happen.One thing for sure , there ain’t no guarantees for none of us. so be good to yourself and those close to you because the reality is that ( today is what matters. ) Enjoy this day! Good luck with the treatments this week ..Hang in there baby!,
Welcome to the journey that none of us ever wanted. Since 2011, I have been ticking off the various treatments and will try Provenge in October 2017. I have been on Lupron and Bicalutamide for over two years. Lupron was a downer for me in the first year. Now it does not bother me so much. I was high energy for 70 years and now I must adjust my expenditure on important tasks. Sit when I need to and take a 15 minute power nap some days. I still push myself and do not accept excuses, but deal with the reality through changing schedules and the physical way I work on my ranch. Surprise, I still enjoy every day. Some physical aspects must be replaced with mental rewards. Now, I accept that my life is different, but still enjoyable. You are fortunate to have a partner who can validly relate to your current experience. Treasure that blessing and continue to grow together.
THANKS! ~~it seems strange that we both had it...him at 62 diagnosed and me at 57..I was afraid it was what we had eaten! (or the water, LOL). Anyway, it's great having him...and we both have to pee all the time so we have a lot in common! I'm off tomorrow morning for my FIRST chemo round. been fasting and I'm starving! hope for good results.
Read just now about your 1st day. Can’t imagine how much fun that is. Drastic measures we take. I pray for the best results with the minimum side effects for you. Some one mentioned icing your head and hands.
yes..I had read about that and requested it be done. So far I've had minimal nausea..healthy appetite..(like a horse) BUT I did have one really bad day with bone pain yesterday from the Neulasta (to encourage white blood cell growth). Today has been much better! My chemo was last Friday...and this is Tuesday now....hanging in!
Be prepared to be taking it easy during the chemo. My husbands 47 and it really knocked him down. He finished in August but then got an infection which led to septic shock. He's recovering slowly.
I have done almost everything that can be done early...(was a Boy Scout...aka "be prepared"...I have a recliner by my bed(in front of the t.v.) so I go from one to the other if I need to get comfortable. I have the kitchen and pantry stocked...and I have nothing in my schedule for the whole first week...and nothing of importance the second week. I'm prepared for the worst...but hoping for the BEST. I've done amazingly well on the lupron ~~I feel it...but most around me wouldn't guess. And I've always had hot flashes...so I don't even notice them.
I was told that exercising is something I should put off until I am done with the hormone therapy because exercising can raise the testosterone and work against the therapy. I was taking cannabis oil before I got my Lupron shot and Casodex, I would like to take it again but fearful that it might not work with the hormone therapy, I did read that smoking cannabis can reduce the sperm count which means cannabis in any form should work with hormone therapy lowering testosterone but not much on the internet about it. if we could keep in touch as we move forward about the cannabis therapy. there is so much new information about how cannabis oil can actually get to the cancer cell and stop if from replicating. I really believe that it does work, just don't know how it works with hormone therapy , I did read that radiation and chemo works great with cannabis oil it even helps destroy cancer so it works great together. I do believe each one of us with Pcancer has to find the right combination and by comparing we can get to the right treatment with western medicine and cannabis combined. I do believe in Jesus and Miracles , faith and knowledge of our disease. thank you for your testimonial,
Robert...I do my first chemo tomorrow morning. (ouch). I'm starving...been without food since 7:30 last night (about19 hours)...I read that fasting 36 to 48 hours before and also the day of Chemo helps with side effects and make the chemo hit the cancer harder. I've wondered about the gym. I am still working out..with lighter weights...and my testosterone has risen back to 28 from 12..and I have about 20 days before my next shot of lupron....so I think you might be onto something. I also walk 2/3 of a mile twice a day with our dog...and keep busy with housework and gardening and shopping...so I am being very active.
If you are able to exercise then always do so. I’ve done so along with adt & canaby oil for my entire 21/2 yr stint with APC , Rt, and Adt. No visable signs of PC for the last yr .Faith in anything is better than faith in nothing. I’m not talking about devil worshipping .But any positive thinking is helpful because our faith WILL be tested. I like your writings. Thanks!
Initially I was concerned about "T" readings especially as mine digressed to zero. I went off Bicalutamide for six months and "T" went up and so did the PSA. Back on Bicalutamide with Lupron every six months. "T" is back to zero and PSA rose some more. Consequently I am now doing Provenge. To my surprise, my energy level did not change much with the "T" values. I do think that muscle strength is decreased, but I am still able to do my work and enjoy it. These "numbers" can drive us nuts. My choice is to do the work I want to do and continue living each day. My Granny worked hard in to her 90's and pretty sure she had low "T". Good luck and be blessed with all that is you and around you.
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Rising PSA 1 year after radiation and 6 months after Lupron
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After Lupron
