am new 74. Vancouver resident Very recently diagnosed with Stage 4 pelvic/ likely lungs/ no Gleason as had a MRI diagnosis plus bone scan and CTscan of lungs. PSA over 3 months 148/196/131. Testosterone 10. Basically asymptomatic......Barely been sick ever. Great shape Excellent blood work. Shocked !
Started Casodex today next week Zolodex...............Obviously concerned about trade off between quality and quantity of life, so would love to find safer and alternative treatments (I am dreaming!) I do yoga classes and ride my bike and am concerned that I am inflaming my prostate further (bike). However my flexibility probably helps my adequate urine flow.........Oncologist said all exercise good............Any others out there with nasty intact prostate and bone mets ( likely recent) who ride bicycles ?
Am anxious but hopeful for a few more years (not overly compromised) . Oncologist in answer to my question said I likely had about 3 years with NO treatment due to the fact that I am in such good shape with no other issues.......Tempting! However will give ADT a chance. Love to hear comments and even contact from Vancouver residents...............A deep healing wish from me to all others on this forum
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miina
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Sorry you're here, but glad you found us. Many of us are in a similar situation as you are and we can all remember what it was like when we were first diagnosed. I walked around the hospital like a zombie for about 20 minutes, unable to even think straight. I was diagnosed at stage 4, really high PSA, lots of bone mets and debilitating pain.
Tonight, I was reflecting back on the last year and a half since diagnosis with my wife. I told her how the last year had been so much worth living, despite the cancer, treatments, side effects, pain from various medical procedures, etc.
Please don't be tempted to do "alternatives to treatment" or no treatment at all. You could have many years of high quality life using the proven, tested treatments available. I initially thought I probably wouldn't do much, but then snapped out of that quickly. I went into the aggressive treatment mode and hit the cancer hard with ADT Lupron and early Taxotere chemotherapy to give myself the best chance possible. I'm still going with an excellent quality of life, so happy to even be here. My family also appreciates having me around. No regrets on my treatment.
Many thanks for your optimistic reply. Reading this forum I realize that despite feeling somewhat OK and having excellent otherwise health I have been under diagnosed and led into thinking that there is no particular urgency by my Oncologist ( "take Casodex andstart Zolodex next week" ) My perception from this Forum is that I should start Abiratone soon
Reading this Forum is not good for ones confidence about outcomes. Wish there were more stories about quasi remissions without significant treatments ............I am sure there are some and I hope that I could be one and report about it here
Yes early use of Zytega along with lupron was proven to lower deaths by 40%. Gotta do both or lupron with chemo. I did all 3 and my quality of life is excellent. Gotta lift weights very hard 3 days a week minimum tho to minimize the effects. Other than a reduced libido and a stomach ache now and then I wouldn’t know anything I’m on anything..02 PSA now
I agree about the weight lifting. I'm early in the process but was on Lupron for 6 months prior to a prostatectomy. I really know how fast I'd lose my big muscle mass. Weight lifting, hiking, biking, do whatever you can to keep those big muscles.
I'm sure you can find some anecdote or other to confirm your bias about alternative treatment.
I wish I was in Vancover it is a beautiful city! Any exercise is good, weight lifting or machines are very helpful. You will lose strength as you lose testosterone. Do not let this get you down, just keep doing what you can. Aerobic workouts might zap you for the day, so pace yourself, keep doing what you have always enjoyed. Don’t let this uninvited guest mess with you!
As I said to my MO the side effects are the price you pay to stay alive. The heat flashes, memory lapses, increased urination, PSA affliction and worry you have to take in strive. To me, life is still worth living. I compartmentalize the month, and one day a month I worry when I get the results of my blood work.The rest of the month is enjoy life.
There is an outstanding naturopathic physician Kim Vanderlinden in Vancouver. He is coauthor of a book on IP6 “Too Good to Be True?”. He is also a doctor of Traditional Chinese Medicine. Hugely respected. Good luck.
I’m totally with Gregg57. Be aggressive. I’ve been on ADT with Lupron and bicalutamide for over 3 years and had chemo (docetaxel) last year. Still asymptotic, hormone sensitive, PSA still undetectable, and my one pelvic bone mets has stopped lighting up the PET scan for over 2 years. Ya, there are side effects, mostly more annoying than troublesome, and you will experience a little decline in quality of life, but it’s definitely worth the swap off. I still play 18 holes of golf 2-3=times a week. I don’t ride my bike much anymore (prefer to take long walks several times a day with my 13 year old doggy 🐶 buddy and his baby sister), but wouldn’t hesitate to do so. If it doesn’t cause pain down there, get on the bike. If it worries you, find a new way to get exercise that you enjoy. I got one of those super big, super cushy soft seats on my bike. Works for me.
I don’t know how long it will all continue to work, but I’m thankful for all I do have, enjoying life, and have a new-found appreciation for all the people and things in my life that I consider to be blessings. When the ADT does fail, I’ll move on to the next treatments. Continue your own investigation and research. IMHO, complementary treatments may be helpful, but I would consider alternative treatment, which totally replace proven medical treatments, to be extremely risky. With approved treatment protocols you should have many more years with a good quality of life than the 3 years your doc gave you with no treatments.
Hi miina. Sorry you're here but nice to meet you. I'm on a number of sites and this is one of the best. There are some similarities between us which may be useful for you.
I'm 63 but like you exercise a lot. My weekly routine was 3 days lifting (2 days upper body, 1 day lower body) and 2 days HIIT. Active on the weekends. Diagnosed 12/19/17, Stage 4, Gleason 9 (4+5), numerous mets to bone but no pain. I started on ADT (Casodex) immediately because urologist could prescribe it, then onto Luperon and Zytiga in January. I had an immedite reduction in endurance and within 2 weeks on Casodex and could no longer do HIIT. Lifting was relatively unaffected. For aerobics I now walk the track for 30 - 50 minutes 2 - 4 days a week pushing as fast as possible, same lifting schedule as before. Bloodwork, almost 9 months in, still makes me look like a 25 year old. Diet is clean and healthy: no processed foods, good protein, high quality fats, lots of fruit and veggies, few refined carbs but not fanatic, small portions when I eat them. Have had usual side effects (hot flashes, sweats, etc.) but have few little now. My urologist said the same to me about waiting until pain hit to begin treatment but I opted to start right away. Had 10lb weight gain immediately but have lost it now. Strangely for a man who has been medically castrated I have no ED and have a healthy libido, though did have a reduction in drive, but my response to that was "thank God."
You will likely have less endurance than before and will need to work to maintain muscle mass, the drugs actively turn muscle into fat. I have maintained muscle mass and even slightly increased it in targeted areas, but you will need to work harder than before. I hope this gives you a little look down the road. Best of luck to you.
We have a lady friend Dr. . She just asked me if “ Have you lost weight” after not seeing me for a few months””. My reply was. “ No , just muscle” ! Doing my best while my capacities diminish.. That’s my reality. I for one wouldn’t be here without adt and RT. If I hadn’t made dietary and nutritional changes early on I don’t believe that I’d be enjoying ( a clear status , albeit if only temporary ) I’ll take it. No E-D ? That is a major benifit mentally. My guy sleeps all day. But he is up all night.. unfortunately a night -sweating guy running to pee all night long with a piss -hard on ,isn’t a very approachable or romantic figure ,and not easy to cuddle up to. The flip side for me was for my first 11/2 years with APC I could not pee at all. I thank god for the trials that face me...I thank god every time I pee.. because I know what it feels like not to be able to pee at all. Although my urologist gave me not much hope .. my specialist plan has worked thus far after tubes, stints, adt & RT, orchiectomy.. keep plugging til we can’t plug no more.. Hope this October bodes well for you.. Scott.
You right about the bike, riding a bike can cause inflammation and a higher PSA reading. At your age (other than the bike ) you have a great lifestyle. You might try a vegetarian diet. There are a lot ADT drugs to try. If and when one fails go to another. You could have a lot of great years ahead if your cancer responds to the ADT drugs.
I have gotten 10 plus years on these drug without going to harsh chemo.
You must hit it hard. Personally I wouldn’t wait.. APC gets nasty quickly if advanced. No pain , asymptomatic. ?? Wonderful !,, You’ ll fare better than most seeing that you are active and otherwise healthy. I was new at 53. #4 shutting down my kidnies.. a miracle that I’m even here today.. you can survive and live but I would not lay back . You must attack ! You have the strenght to prevail. I’m a mountain biker. I still have my prostate.. It was so gigantic that I could ride until RT and adt shank that sucker to oblivion and tiny now.. I ride now, but I got an eliptigo for the interm. $$costly new but used on Craigslist not as bad. Great cardio, standing up, I highly recommend it.. No questions go unanswered here. Ask and follow your own drum beat.. Welcome to the club. We can relate...
Wow so great to hear all your stories.Even though I am 'advanced' I believe my PC is slow moving (year on year CT) I prefer to think that i am in great shape/have great friends/ great partner/ Buddhist faith/ good naturpathic Dr.I am often thinking healing vibes as 50% is attitude Not looking for much more than just a few good years..........treatment yes but only to a degree...........Re bike riding.......sit way back on but
Question............If you inflame a cancer cell, as you might a healthy cell (hit already cut finger) does that make it more active...ie proliferate or does it interrupt growth.........say a lesion on outer pelvis..........Certainly bike riding can impact PSA and might inflame healthy cells.
Please scratch of that 3 year date from your mind and calender. The androgen deprivation therapy will give you excellent time to follow a healthy cancer diet. Sorry, will have to replace your biker's breakfast with something healthier - no red meat, milk or eggs. Replace bad fat with good fat. A good fat is olive oil. It takes time to get use to eat like a goat, but later you will like it. But please don't give up your first line treatment. Your alternative treatment will only compliment it.
By Bike I mean bicycle........difference between Canadian and American terminology! Diet is a minefield.......I used to eat a lot of salmon but it is questionable due to high methionine. Eggs too. Kefir is my only milk source. Tough choice as calcium supplements not absorbed well into bones though adding K2 supposed to help If you look at all the diets out there (Blood type/lechtin/ketogenic/ macrobiotic / no nightshades etc) and combined them you would only be eating vegetables and some nuts. So lots of veggies /small amounts of meat/fish/ nuts/ whole grain carbs. Eggs once a week
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