As an update, I was diagnosed with PSA 194 in October 2017. Started Eligard and chemo. I finished chemo in March 2018 and PSA down to 0.9. Still on Eligard. All cancer in lymph nodes disappeared, but a 'primary' tumour still in prostate. That is now being treated with external beam radiation as surgeons felt I had a very high risk of incontinence and lymph node complications. Radiation team today suggested I take a sachet called 'Ural' to deal with potential urine acidity. But it contains Saccharine, which put my back up. Is there any issue with Saccharine and PCA?
Thanks for any advice.
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jimbob99999
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There are no PCa studies that associate saccharin with increased PCa risk. In fact, an Italian study associated it with less risk for most cancers - except for esophageal & laryngeal.
Odds ratios "for consumption of saccharin were 0.83 ... for cancers of the oral cavity and pharynx, 1.58 ... for oesophageal, 0.95 ... for colon, 0.93 ... for rectal, 1.55 ... for laryngeal, 1.01 ... for breast, 0.46 ... for ovarian, 0.91 ... for prostate and 0.79 ... for kidney cancer."
No problem with saccharine, but I also have never heard of a problem with urine acidity. Highly acid urine (as from fruit juices) can stimulate the kidneys and make the urgency due to radiation irritation worse, but radiation does not acidify urine, as far as I know.
Many thanks. It wasn't really explained, other than that I will experience painful urination towards the end of the 20 doses of radiation. The cause of the pain is supposed to be acidic urine irritating an already pummelled urethra. Hence the 'baking soda' to produce alkaline chemistry.
A complete dietary change to remove as much sugar as possible is a good thing and saccharine is an obvious replacement so any sachets with it in cannot really be a problem.
Natural sugars in fruits are ok but not granulated sugar.
I have a "moderately sweet tooth" and since 2006, I quit eating or drinking anything with added sugar, so the sugarI have avoided over 12 years probably would weigh more 100Kg, so at 71, resting HR is about 50, BMI 24.5, and I have cycled 130,000km. I replaced the sugar with saccharine in coffee and tea, and asfaik, I have had no bad effects. I have never met anyong allergic to it. So while I am extremely healthy I have a very unhealthy problem called prostate cancer which is countless small bone mets and maybe some tiny amount in my chest organs, ( visceral ). I begin Docetaxel next Tuesday. So the fabulous good health I have has since diagnosis in 2009 will take a hit, cycle speed will slow a bit, and doc says chemo will not hold Pca down for ever but I might expect 8mths. Psa was 6 at diagnosis with Pca out of capsule so after opening me, docs decided they could not cut out PG so that led to standard EBRT and then ADT for 8 years, and more IMRT, and cosadex gave 6 months and abiraterone gave 8 months, and since diagnosis Psa has not been over 10 but has been as low as 0.08 at 8 years ago.
During next 6 months I want to get Lu117, maybe radium223, because I bet Docetaxel, taxotere, will stop working, and then the Psa may not mean much because some Pca cells will not be generating Pca , so that may mean high grade chemo, so my fight is only beginning. I am lucky to be able to pay for whatever they think I can have. In 6 months, I expectg to have zero hair, and no finger or toe nails, but life goes on, until it does not because my little world has enough wonderment for me to keep going. If I just feel so bad for so long, with no hope if getting better, then I'll know that's the time to quit fighting and let myself die.
In your case, I would not be too worried about saccharine when far bigger worries are ahead of you. I took Ural in late 2010 to help against pain with pissing for the last two weeks of radiation and week after radiation. It did nothing to ease the pain, so I just had to grin and bear it. But a month after radiation, I got back on bike and recommenced the average 220km a week.
Men should remember to get well examinedis Psa exceeds 3.0, and if it is found, get it cut out and wave goodbye to all your sexuality. If you don't get it cut out early, and all PG tissue with PG dna, then whatever they leave behind may not have Pca but may become Pca in future, so the RP is the only way to beat it early, and not all RPs achieve this. My Pca probably began in 2004 but Psa was low. And not all men make the same amount of Psa for the size of the tumour, so because I had a low Psa for a big soft puffy tumour, it probably spread widely before the attempted op. I am chasing a horse that bolted a long time ago, and you need to undertsand why 30% of men diagnosed will be killed by this cancer. They all would have tried to fight it. So enjoy life while you have it. And sometimes I have sugar in my tea because weight has been under control for years, and I ain't no fanatic.
It was cold day here in Canberra in Oz, and I cycled 20km to and from hospital for the the education day about chemo, and nurse was nice, I like the ppl at the hospital who care for me.
Hey Patrick. Kinda wordy today, aren't you? Am on docetaxel for the second time. 4 sessions this time, fifth on July 27. The first time I had 8 sessions 6 years ago and it worked great. PSA plummeted to 0.03 and stayed there for 3 years or so. Was 72 then. Now 78 going on 79. Started present treatment with docetaxel with PSA at 7.05 and after 4 sessions dropped to 6.95. Am on Eligard also and started the docetaxel after Xtandi didn't work after 4 months. Taxotere is not so bad. Leaves you kind of woozy, tired, legs feel really heavy like you have lead boots on. I have fatigue and back pain when I stand or walk but I attribute that to residual Xtandi and maybe Eligard. Have to assume my testosterone is very low. Next blood test take a look at ALKALINE PHOSPHATE OR PHOSPHATASE (ALP). This evidently is quite significant. Even though my PSA didn't budge much this time with docetaxel, this ALP did, and quite significantly. Ask your oncologist about it. It's a measure of met activity in bones and kidney.
Take care. Am going to do 20 km in my car if I can get it started!
I am sometimes told I say too much, and so often its because ppl are poor listeners. But my success in life has been due to seeing so many things that other people did not see.
At the education day for Docetaxel yesterday, I was the only new patient. I am 71, and nurse at hospital said there are guys of 50 who have a terrible time with taxotere for Pca, while others of 90 breeze through it.
She says nobody can know how they'll handle it until they have to.
I know a guy of 85, diagnosed in 1993, still getting along with life OK but his missus is getting forgetful. He was so sure about various aspects of his treatment and said I must do this or that, and so I did, because at least I could see no harm, and nor could my GP. Well, what he said would happen with me just did not happen at all. I kinda think he was lucky to get a slow growing weakling variety of Pca, or else he's stronger than all of us. But another friend has gone from diagnosis to end of chemo in 3 years, RP + RT + ADT hardly worked at all and chemo only lasted for 6 months.
I have read hundreds of stories at online groups by guys who tell their history, and there is much variation of how much luck anyone gets. I read posts by a few relatives posting to the group who mostly said "Dad tried every chemical in the cupboard but they can't do any more now."
My last PsMa scan 3 months back showed many tiny bone mets but nothing in organs.
Psa is 8.5. I still am on ADT, but it stopped working last year and I took abiraterone which lasted 8 months. I am glad to be off that stuff. The hospital will be taking blood tests throughout my time on Docetaxel, and will be watching everything, to get the size of dose right, and time between infusions right. I cannot pretend to be an expert on this kind of treatment, and to a large extent I am in the hands of trained professionals and I either make it or I don't, and I hope to continue cycling as much as I can tolerate, and I know my average speed will take another hit, and maybe every little hill will seem a huge mountain.
I may need to have
Lu177 if the chemo hardly works; the onco doc said I could have it if I wanted it, and I may need it to have any chance of stopping the Pca. Its one thing to get all that is available but then I have to try to recover, and I will be a lesser man, hairless, without finger and toenails, thinner, weaker, but hey, alive, and I hope I make it to your age.
I have a nice little project of building a good pair of 40W audio amps using vacuum tubes, so I know how to keep occupied, keep myself as well as I can and all without any support from anyone.
It seems like your present chemo sessions are making Psa stable, not rising, but not falling either, and if that happens to me the docs will maybe try a more powerful chemo, because if Psa is not falling, it means its very much alive, and you cannot continue on same chemo forever. Not all Pca cells continue making Psa.
Like all living cells Pca cells divide to make new ones and old ones die, and the later generations of cells become different forms of cancer, so a man ends up with more than one type of enemy, docetaxel might kill only some, while others are not much affected, and then a man's treatment becomes purely experimental.
And boosting the immune system after chemo can be risky because the immune system is suppressed during chemo and may take ages to recover if it ever does.
More questions arrise than can be answered as time goes by, but nurse here said there are 4 levels of chemo I could try, and as you go up the levels the side effects are more severe.
OMG, if all this treatment and agony over decisions is your idea of non stop fun, then what would you call a day with no boring disease to worry about, like when I was 30, totally indestructable, apart from GMHBA events. ( GMHBA = Got My Heart Broken Again ).
I often think if I could be 30 again, and knowing what I know now, the girls would really like me, but aftwer awhile, I reckon they'd begin to talk to their friends about me ....... "Ya know Anne, there's somthin strange about that Patrick guy from Australia, he knows a lot but its as if he has a 71yo mind..."
"Well Christine, he's an expert in the cot, and he can cook, and isn't lousy with his dough... "
"Hmm, one of them boring sensible guys.... "
So going back to 30 would not mean I'd do any better than the first time I was 30.
Probably afta settle for riding around on a bicycle, cycing which can be more rewarding than riding a sheela when you go over 55 :-),
I was not fully able to reply about artificial last night because today there was a radio discussion on Australian ABC Radio National which included a researcher from Adelaide Univeristy who said that we all have sweetness recpeptors in our tongue, but also in our stomach and it seems the body is hard wired to eat any kind of sugary thing, because our bodies recognize sugar = energy.
BUT, today, we are surrounded by junk to eat with sucrose, dextrose, and fructose, all added to junk food to make it sell and to trigger insulin response so we get hingry soon and want more which makes the big fat undeserved profits of food companies who put profits before nutrition. Fructose from corn syrrup is particularly bad for anyone, because it can't be so easily broken down so be get a fatty liver, and the statuse quo now for obesity rates are truly obscene.
So saccharine etc can have wierd effects to trigger insulin resonse, but if there's no sugar to break down, then I guess it makes cravings.
But I have made my mind VERY STERN about food, and I have good diet, BMI 24.5, resting HR 50, and can cycle 220km a week at 71yo.
I see all these other ppl around who say my nearly vegetarian is stupid, is bad nutrition, etc, etc, BUT, none of them can come with me on a 70km ride, all have BMI about 32. These pp, are all in a poor state of health.
Yesteday I went to education day for chemo starting next week. The supervising nurse
of about 55 is at least 25Kg over weight, and another nurse joined us for a moment and she was 40, and even fatter. Whether they have saccharine or not is not an important issue, because they obesity is the real problem. I had to be careful what I said about eating lest I offend them, because I need these two warm hearted wonderful gals on my side during chemo.
The bottom line of truth is most likely to be that saccharine is OK for your cups of tea or coffee, providing you keep your weight low and wasteline low for year after year after year, so you need to understand the meaning of the word NO.
I suspect many female nurses in hospitals dealing with cancer are swimming in a sea other peoples' troubles so they can't help but get stressed, which tends to make them eat irrationally.
I once got up to smoking 10 ciggies per day at 34, and a GF said I smelt like a chimney, so I said OK, never again, and she said "Ha, all you men make promises you cannot keep.... " and I said "you don't know me very well" and I never smoked again. But that didn't save the relationship, and 10 months in she just could not resist the pull of the world and travelling some where else to avoid committment so she sure never made any promises because I guess she could never have kept them.
Well, the heifers can't generate bullshit. If you go round saying they do, then then an Army unit headed by Generaless Germaine Sneer will call around to your place at 2am and remove your balls regardless of the fact you have been on ADT for years. Some roosters are changed to feather dusters one way or other.
But from personal experience, I see that bullshit is troweled onto rought brickwork walls to give a lovely smooth finish so that it emphasises with spoken bullshit where a minority blokes in the room conjure up all manner of schemes to make life worse for most other blokes to satisfy dreams of sex, money, and agrandisement,
which occur in life in about that order.
Meanwhile the gals are trying hard to trowel on their own kind of "heifer dust" to walls everywhere, and we can see from Ms May, and Ms Merkal that its hard for them to get the dust to stick to walls, especially Donald lets go with farts of political bullshit in the room.
So we are kept smiling by these characters strutting life's stage, and we hope the violence and stupidity in the world lessens and medical fixes become better,
and more learn about love, and the practice of it, but don't hold your breath waiting for it to happen.
Since my diagnosis in 2009 for Pca, the only things that came along to extend life have been abiraterone and maybe enzalutamide, and possibly Lu177 and radium 223. If the initial RP was not fully successful, or the initial EBRT was not successful, you have a fight with a chronic disease for the rest of your life. There has been NO breakthrough cure for Pca if the inital treatment didn't work. 9 years and SFA.
Occasionally you hear or read about someone getting remission, but it is so woefully rare that its unlikely for anyone.
But amoung other men my age, I see that most have all sorts of health troubles,
so if I didn't have Pca, I'd have some other darn thing.
But I enjoyed a nice little 42km cycle ride this arvo, and I'll do another 60km tomorrow. I have no clue yet how I will be later next week after Chemo dose No 1.
Forgive me I wasn’t being flippant.I was commiserating with facing this chemo. I haven’t done it yet my self. I read your post over and I see your serious viewpoint of life living with APC .Me being only 3yrs in its all just a bit of a whirlwind. Settling down for the last 2yrs. Hope prayer love , I cling to these. It ain’t no joke. However , any moment not thinking about APC and just enjoying life is well spent. BS the world is full of BS on every level. I agree with you. Let’s not bullshit each other. Pray it goes well as possible during this treatment with good results for you. Take care. Good Luck😎
You have done nothing wrong. I have had a lot of time to read case histories in many groups and think well about what treatment I might choose, and fortunately I have good doctors in a National Medicare fully funded system which prevents the medics here from charging the greedy and excessive amounts charged by USA medical system. I do try to check my facts as I go along, and I also like to have beliefs based on evidence, and since diagnosis in 2009, I have had time to think before choosing or accepting what is available as treatment. None of us can avoid The Inevitable, but we all want as much time as can be managed, and preferably with as little pain and complications and side effects as possible. Last Thursday, some 9 days after chem1 I felt very well, and cycled 17km to hospital to see the doc who wanted to review how I was going. He was pleased I arrived by bicycle, it meant I was going well. I cycled home OK, with a new med for reflux and then spent 5 hours in shed on craft work and got to sleep at 2am, so a nice big fat day of doing a lot. But next day I felt low, and started getting shivers and ache in bowel, and phoned the "Rapid Response Unit" set up for chemo patients, told them I had temp at 2C below normal and they ask me to get to hospital so I drive over.
I got home 3 days later after course of intravenous antibiotics. I get very much better and was able to cycle 10km today with 7 hours in shedwork. I found the hospital is crammed with many patients but also mostly most wonderful nurses and doctors, all with a very positive and helpful attitude. After the two days I thought it would not have mattered if I died because I would have been surrounded by strangers giving care, and caring makes you know people faster than any other way, so if this Pca wants to kill me early, or I get other infections because my white cells are low, then I won't mind dying. I might live 5 years, and maybe have other reasons for needing a hospital, but compared to millions of other lost souls all around the world I am in the right place at the right time at this point in history.
I know your whirlwind world, and when I write of it in my diary, I call out Planet's people the "Whirled", because here we all are, being whirled around and around from day to day and from event to event, and the only certainty is uncertainty, and how we react to it when we know our voyage will soon end varies from one person to another, and I wish I could wave a magic wand to take all the anxiety and worry away that others feel more accutely than I do. I kinda decided to be as nice as possible to as many as possible and just do good, but without God, because I just can't accept God exists any more than I can accept Santa Claus. The idea of God has arrisen in every society known since civilization began about 10,000 years ago, and a deity probably was invented by many ppl during the hundreds of thousands of years before civilization. God ideas are a kind of imagined bedrock or order or rules in a society where otherwise there is chaos, perpetual petty waring like the behaviour of groups of monkeys and other animals which preceded us, and which remain with is still. But because God and the rules are so often offended and broken we soon have wars anyway, even with our God, so the idea of God has caused rivers of unnecessary bloodletting. I quite like true believers in Christ, or Mohommad and Budha, et all, but when ppl say these ppl are divine entities, then I just walk away, because argument is quite pointless. Fortunately, I live at a time in History where nobody forces my beliefs, I do not have to buy something when it is advertised, there are no witch burning police here, and no secret police, and my world gets along with itself remarkably well with millions of ppl not believing in god, but practising goodness. We have out share of arsoles here like anywhere, but really, they are few, even though they get the news headlines. I know I am in a good place despite whatever I think could be better. So I am able to just do what I have to survive, day by day, and sure, it can't be forever. I won't live to 98 like my mother, but I am so far 11 years older than my father when he died. I can only be grateful.
You are correct, wrongs done in the name of religion are the worst in history, when will that stop..? It seems to be a human condition . The hootsies killing the tootsies because they live on the other side of the river. Governments create external enimies for us so our eyes arent on our own government , theyre on that dam people beyond our borders or of a different religion.they create an enamy for us. . autrocities made in the name of “God” the belief that i am better than thou ,because i belive in certain things that you dont is total bologna. You being kind to all is the way that we are all supposed to live. I like the buddhist approach to respect all living things, even those that dont agree with our views of the world. If we all were kind to each other we would not need to destroy those that belive differently. I believe in god because i was taught as a child from my mother the basics of asking forgiveness and being truthful and honest and yes a belief in something greater than my self. I am flawed so that was an easy sale. Appreciation that you have is the keystone to living thru adversity.. Gratitude , i like it.. none of us is getting out of this alive.. no different than any other living being on this spinning orb. Day by day, just holding on during this mad hatters wild ride .. There is good and bad and light and darkness in us all ..If we play to the good and the light we will find like minded people and like wise if we go to an evil dark side. That exist also. A name, a title, a religion theyre there to give lost travellers a path. Our minds can be so strong that if we believe in something strongly enough without falter it “Can “ become our reality. Like the placebo effect. Thats real because taker of the placebo believes and has hope in it. Dad got Pc at 70 after remission from bladder cancer due to 2pks a day for 35yrs. Even. Though he quit at 55 . It was in him. He got his prostate out. Mom was leaving him for a younger con man that took her $ . Dad died of who knows what at 71, he had no love at home and decided to leave . Moms boyfriend got out of jail and molsted his 13 yr old daughter, went to prison End of that fantasy for her.. A year later i flew to medford oregon to see my dads brother Ed ,my favorite uncle, Ed Jones, at home starting hospice. The nurse was hooking him up with his first morphine shot. A moment of silence.. He said “I know what youre going to ask”. “ .Am i scared to die?” Without hesitatation he said “ I am at peace with my maker”. No fear , he was a great man. He said im ready to go.He left two days later. we are all going to face the end. To face it without fear and a clear concience is a win win in my opinion. I hope to emulate this strenght of character in the end. Flash forward 20 yrs and i have inherited my dads side of PC . Hopefully i got a little of that resolve to go out in stlye giving and recieving love and some respect along the way.. i havent reached nirva or total enlightenment , being very far from perfect , but Making peace with self and the world is my goal... pc well deal with it... I am 57 . They tell me ill never see 80, they also told my expiration date was 4months ago. Am i living on borrowed time. , hell yes, make the most it.... i have pains i have symyoms and side effects , cognitive , no strenght or not much energy. I feel pretty good today. Thats all one can ask for. Peace on your voyage...
If we can’t relate to each other, all of us going thru the same motions in the same boat, who can we relate to?? I am happy to be alive. Our future are up in the air. Take care friend.
Peace on our voyage is most welcome for most of us, but some just can't help diversions to engage every known vice apart from the 7 well known vices.
But even the virtuous who love others will suffer because they are involved with the "diverters". So far, I have avoided being wrecked by other ppl, or by a car accident, bike accident, but I just can't do much with a DNA malfunction that has a result of early death.
I had a good day, and spent it handcrafting an audio amplifier in my shed. I listened to ABC Classic FM radio all day.
I just can't help concluding all the best music was written before 1920. Even though I spent most of my life with excessively high testosterone, the best music for me always was classical from an early age; if I were to be stranded on a deserted island, I'd want recordings of Mozart, Bach, Beethoven et all, and I'd not miss the Beatles or Elvis P.
( no offence to their avid fans ).
And when all seems lost, there is still music, and good music for me is the balm for my soul. I have utterly no idea of what my soul is, except to say it might be a kind of total summation of who and what we are, that being that feels its way through life, sometimes thinking its way, about itself and others.......
I'm getting strange sensations of pain in my neck extending intomy thorax, so the Pca in bones lurks omniously, occasionally tweaking nerves strangely, but not often enough or strongly enough to want to end it all. I got a good 8 hours in shed and rest spent shopping and chasing stuff, as one must, and I don't know about you but for me, I must be my own servant at all times, as I have for last 50 years. Iam quite serene about being alone. I don't have to suffer the extra work of having a noisy crowd around me, all wanting something. Yet I liked the last 3 days in hospital with the noise, the noise of care, yeah, I can take that alright. I don't mind someone else being team leader, I spent 40 years doing that, glad to not have to now.
Anyway, Lulu, I am on your wavelength, I cannot see why the world has so much wrong with it while a fair amount of it around me has more things right than wrong. Given time, maybe the worst parts of the world will evolve trustful democracy like we have, and they will discover that tribal living enforced by violence is just no damn good, but don't hold your breath waiting.
I don't have children or grandchildren, but I I cannot imagine how the world will be when today's 3 year old reaches 63. I doubt many can be of much help to the 3 yo except by offering protection, care, the keys to confidence, getting skills, avoiding risks, and then he or she is on their own, and the world of 2078 is entirely obscure to me now. I am sure there will be threats to everyone alive, but also delights we cannot begin to imagine.
I hope they all have time for peace and good music.
To and froe on the bike! I commend you.. I ve met Several wonderful people assisting me in my treatments over the yrs. I respec5 anyone working with cance4 payients. A tuff job . most nurses and doctors want the best for us.
Upon PCa diagnosis, along with 5.7% A1c (borderline prediabetic), I too cut out all identifiable sugar including my daily half-bottle of wine. As I hoped, within three or four days sugar cravings subsided and my palate expanded - absent sugar, there are many more subtle flavors to enjoy. Better yet, in this expanded-palate state, saccharine and other sugar substitutes taste like, well, crap from a chemistry set.
But try to find a snack without sugar at a highway rest stop. Salted nuts and unsweetened iced tea is about it. Sometimes a wilted salad sweating in a plastic box.
You are fighting the good fight and winning.. Drink tigersblood ! Whatever it takes to stall the beast inside... Not a word of poor me. Admirable sir. Keep the faith...
I too am not a candidate for surgery. Adt , first eliguard then lupron until orchiectomy 9-16.. good results for me so far. Hope you knock this thing out of the park.. Im on a reprieve with no psa or visable signs. Ill be tested next week , fingers and toes always crossed for good results. Does this mean that i think im cured or done with apc? I wish. Reality is we all dance with 5he devil to various degrees until the end. We cant ever sit back and say i won .. APC is long winded and tenatious. Dont know if your on a natural plan. My belief is it helps. eat, dronk, and be merry. Or in our case eat real healthy whole foods , drink lots of pure water, and be merry in general woth the world around us. Its not all bad..Hers wishing you a speedy recovery from chemo great results and joy in your life. Peace JB. Hang in there!,
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