Well, I had a dribble, then got a blood test. PSA had gone from 2 18 months ago to 8.
Next for an ultrasound, external. Results showed tumor 25mm x 12mm.
Next to the specialist. MRI Scan and Bone scan. Confirmed tumor. Next Biopsy, general anesthetic for this one. Biopsy confirms Prostate Cancer. Last Thursday 30th October went the Robot.
Back home now with catheter attached to leg, bit sore but still here. Test results due on Monday, today is Saturday. Doc is confident we got it all. Nerve sparing at 80 percent.
Well, update. been home for 1 x week, get the catheter out tomorrow. There has been blood in urine when bowel movement. Been taking stool softener to assist with bowel. Forst two days tip of penis is sure, will,be glad to get rid of the leg bag. Hospital gave me a supply the of night bags, been filling these up, keeping water intake up, and walking morning and night. Results came back clear, good! Will have to monitor of course, but confident cancer was contained. No cancer detected in lymph glands they removed, there was cancer in the seminal tubes and it was in prostate inner wall, looks like I dodged a bullet by 1 x mm. There are Six holes - lots of stitches from surgery, sore in the middle area, but most of all sore leg for some reason?? They must have had to move my leg while operating, and stretched it too far!
Had the catheter removed today. That stung a lot, but bearable, pain threshold is up, so good to have it out!
Once out, had to wear a pad in case of leakage, then had to drink 800ml of water within an hour, polished my jug off in twenty minutes. Then pee into a bottle. First pee was amazing! not much volume but managed it! What a relief, it works! then they check bladder with ultrasound to see if bladder emptied, which it did. Repeat x three times and I'm home. No leaks yet, and piss stream is good once it gets going. Tip of penis is very sore! Red and sore, hopefully this improves now the tube is gone. Resting now, will report on leakages once I experience more.hospital gave me a giant bag of absorbent sample pads to take home.
Monday 10th November.
Well been trying to get an erection to no avail, stone cold nothing! Mr wobly has no get and go! Oh well will keep trying, maybe get a pump in a week or two. I will be seeing a Cock Doctor after I meet with my Doctor next month.
Leaking yesterday but only slightly, not wearing pads during day or night, which is good news, Doc did say he was happy with that part of surgery. Hope I don't have to wear them! Peeing more regular than normal, and getting up at night, I have read this is normal.
Still stinging a bit, and finish antibiotics today.
Pain - minimal now still just on panadol garden variety, haven't had any today.
Exercise - yes doing a bit, have lost six kilos since diagnosed and walking at least one hour a day, not going back to work for a few weeks and just going to concentrate on my recovery.
Saw both doctors Thursday 4th December.
Will be getting first blood test follow up in a fortnight (Monday week) to check PSA readings.
Still have some spasm nerve pain from time to time and occasional leaks, had a throbbing near drain wound, mentioned all this to Doc, he was not concerned. Says there is 75 percent chance of successful cure.
Next to the ED doctor, he had given my three types of medication to try. Viagra, Levitra,and Cialis, with all but zero results, perhaps a 2 out to 10 for the Levitra.
So no action at the station, he has given me a week of 5mg Cialis to take then a dose of Viagra and Levitra to try, have penciled in another appointment for next Thursday, if no erection will have to go for the injections, he says it's important to get at least two erections a week to flush new blood into the penis and to avoid scarring, which is permanent. Will be 12-24 month repair.
Going back to work on Monday, that's about six weeks off. I have certificate for more ti e if needed, the big test will be sitting down, as I have been either vertical or horizontal!
First PSA since operation was 2.5. Bummer. Hoping for zero. Have next test this month, so will see how that pans out. Injecting penis twice a week, chemical pain is bad, have reduced dose down from 25 to 10 which is bearable. No nerve repair yet noticeable. Exercise has dropped off and motivation is low. Went to a cancer support group night. I was the youngest there and good luck to them, I will not be going back.
Well fuck it! PSA is climbing again, doubled up to 4. looks like they didn't get it all! Oh well. More tests, feel ripped off! Angry and hurt.
Going on the Alkaline journey now, they can stick their radiation and hormone treatment up their arse as far as I'm concerned! (well that's how I feel today, this may change next week!)
So I'm going to quit my job and get healthy and give this a good go. Baking soda and Alkaline here we come! I feel fine at present so may as well make the most of it.
Met with the specialist today. He says we need to start hormone treatment. I have tumors in approx 6 pelvic nymph glands, PET scan showed no cancer in bones, liver, lungs, but PSA is doubling every couple of months, so it is aggressive. Going to a cancer health farm, organic foods and meditation before I make decision. Diet has changed, now a vegan, drinking alkaline water and bicarb soda as well. Have ordered some black salve capsules. Eating high alkaline foods. No sugar or junk, feeling good, losing weight, but have odd pains. I want another PSA after health farm to see if making any difference, I dread entering the medical system, but... Not a decision for today. Riding my motorcycle 1200klm to health farm will be nice, and will take three months off work to get to a healthy groove. Still no natural erections and injecting twice a week. With the PAP, has no chemical pain like the other dose I was using. Viagra not working at all. Went to a shrink that specialises in medical sufferers, subsidized, so I thought why not, she is into Tapping, and other weird hippie treatment, keeping an open mind, I believe in the power of the mind.
PSA rising, doubling fortnightly now at 8.3. So no choice but to do what the specialist says and get chemically castrated! Or should I say, Hormone Treatment. well I plan to have the 3 x month injection this Friday. That's all I will commit to, see what side effects there are. What I cannot understand is how fast this lymph gland cancer is growing. So we have gone from pre-surgery "80% cure" to living with cancer! WTF! I'm suspicious! Let's see how it goes, it may buy me some time, very wary of what my quality of life will be. There sure are some horror stories out there! I have left work, leave without pay, and will be spending more time on my Triumph and Harley, and living the way I need to.
Received results back from 6 weekly PSA test, good result down to 2 from 8.7. Something is working. Have appointment with a oncologist this Friday. Definitely on the medical conveyor belt now. They will be wanting to radiate next then chemo, I'm hoping to be off ADT at 6 month mark, but they want me on it for 18 months. The ADT stops working after a while, it is to buy time, I have already crossed over into treatments I didn't want,so I have entered into this thing and it will swallow me up or die! Still injecting myself into the penis 2-3 times a week, no desires, sex life is, well I would would rather not say... But read in between the lines. This is shit this fucking cancer, I hope the ADT slows everything down enough so me body can fight it with natural veges and nutrients, some of my internet snale oil potions and meditation! not sure if anyone reads this YANA? stuff ya's, I will keep posting anyhow! Running out of money and being off work for a while will start back casual soon, not cause I want to, but because I have bills, these quacks cost a fortune!
Had appointment with Chemo oncologist and she referred me to Radiologist.
Had appointment with Radiologist, she presented my PET scans to a panel of six other Radiologists and only one said they would radiate. So radiation is off the table unless used for pain relief in the future.
So they put me forward for a trial of new drug called ENZAMET. so new set of CT scans and bone scans blood tests were done.
The good news is:
"there is no evidence to suggest residual or recurrent disease at the previous prostatectomy site. no pathological enlarged lymph node or distant metastatic disease is identified."
"no bone scan evidence of skeletal metastatic disease"
So I will get the next Eligard 3-month injection next week, and see where we go from here!
For anyone that's interested, some of my alternative treatments are:
meditation, prayer, Pomi T, Apricot Kernells, Black Salve internal capsules. Amazon 111 Tonic. Mangosteen dried skin, turmeric raw, ginger raw, green alkaline diet. Bicarb soda, vitamin D, C. reduction in meat fish, sugar dairy, processed food.
Well thought I would "check in" as someone actually read my log and contacted me, thank you! It meant a lot to me..thank you! you know who you are! I'm Still sticking needles into my dick twice a week, to bar up and get some blood into my placid former glorious self! Really getting sick of doing this, like a moth to a dying flame, clinging to the hope I still think I may get my life back one day! I went back to work 3 x days a week, 'cause I'm broke, so much for my serenity...but we're planning a holiday at the end of the year. Something to look forward to. Anyhow, diet has gone to shit, and no motivation, depressed and the quack keeps trying to write me scrips for antidepressants, FFS! They cannot handle the truth! It's normal to be pissed off, no need for happy pills I don't want to be a friggin pill zombie! More pills, drugs, piss off!
I Got my results today, *because I live in 3 x month sections now* PSA is now .13. Which is fuck all! Good result I think. Have to see the oncologist next week, as due for another 3-month needle to stop testosterone.. It zero so mission accomplished, don't know how long I will be on this, it is 6 months now, but please to be alive today, it's been 1 x year since surgery, what a journey! Keep strong all! And best wishes!
Latest PSA results. 0.17 getting next Elegard injection next week. At the nine month mark now. There is an Elegard nurse service, that will administer injection in the comfort of my own home, so will give this a try. Has to be better than the local clinic, it's like getting a shot of two pack epoxy resin into the guts, I dread it every time! Had a trip to Europe since my last update, was fantastic, took along my "erection in a bottle" but some places we couldn't keep refrigerated, so chucked it out. Got a new batch now, and will try to get back into a groove. Needle in, harden up!
Mentally getting tired, have felt like giving up, have put on 16 kilos since started ADT, I have joined a study at the local University, on weight fitness and side affect for cancer dudes in ADT. I'm still in the assessment stage atm, and hopefully I will get a nutritionist and some exercise incentive. Back working a couple of days a week, it's a bit crap, but need the money, yeah. Starting with my hipster colouring in book, back to meditation, riding my classic bikes, getting guitar lessons again, so I'm living life, but tired still..hope you're all well and alive out there in Cancer Land, thanks to the couple of peeps that have been in touch!
Well have had my fourth 3-month injection, got the Elegard nurses around this time, they were lovely and gentle, didn't feel a thing compared to those medical centre apprentices! Animals! I made the decision to quit work, from part time to no time, finish up in two weeks, early retirement I suppose, wife might have to work two jobs now to pay for my motorcycle obsession! Anyhow will be getting back on the health wagon, as I'm over 105kgs now, should be 82kgs, heeps of weight gain, still alive that's the main thing! Seeing food and exercise guru in a fortnight, didn't get the intervention at the university study, bummer..stay alive and fuck cancer!
Not good....latest tests show PSA increasing, that's twice in a row now, over 6 months, once more confirms castrate resistant...guess I will find out in three months! What else, not much else.. Have had the 5th 3-month injection of ADT. One more will be 18 months, they are gently guiding me towards chemo, I think. The 20% chance of that working is not getting my attention. Radiation is out so there are not many options if the ADT stops slowing growth. The PSA readings also need to be 0.5 to appear on the scans, so no scans to see if spreading until then. Not much else to add, gone off the "injections for erections", (should be a song, but who would buy it?) couldn't be bothered. I can get a 3/4 without now, but need to look at porno for stimulation, sure isn't on command, not big on the visual, and not really interested, guess that happens as I'm being chemically castrated! Doctor wanted me to go on antidepressants, I said no, unless my wife finds me unbearable! I have always been a moody cunt anyhow! Plus most people I see on the happy pills are stone faced sad sacks! Fuck that! Thats just my take, if you need them, well, that's your business, but read the packet. I have had enough side effects thank you very much! Riding my Triumph, got my other '64 Bonneville going, also riding my 1200 Sportster, went to a mate's funeral yesterday, he died of cancer. Colouring in my hipster colouring in book daily and just finished a 8 week mindfulness class. Playing some guitar, Meditating daily but food has been tough, eating sugar, wheat again. Not much exercise, yeah I know blah! blah! Gardening a bit little bit if fishing, retired from work, watching heaps of TV, and that's about it this time, will keep posting, it's a good site I think...
Wish you all the very best and remember "Fuck Cancer!"
just fixing mistake on previous post re treatment type.
Got my 3 monthly results from the GP. My doom meter, PSA reading is up to .36 ug/l so is become apparent, now it's starting to double. You know what that means? Yep! Thats right, ADT resistant. Running out of options...Meeting with the specialist next week, so see what bullshit he says, I have contacted the Rigvir virotherapy and getting info about that. 104 kilos with no clothes now, really porking out now! Not working and amazed that I did for so long, being supported by wifey at the moment. Back on ninju rabbit food, this may last more than a day this time? Fuck feel like a tub of Tom & Jerry ice cream!
Hope you are all fighting the good fight out there in Cancer Land! I have not much else to update, or add atm, no advise! no, I got nothin! One Day at a time.
Hey fellow PCA's! There is a tree here where I live, only found in the rain forests of Queensland, Australia. Guess what? They have developed a cancer cure. They have being injecting into tumours in dogs and horses, turmour goes away. Holy fuck! Probably no good for me as my cancer is in lymph glands, but for those of you that just have industry standard prostate cancer, get onto it. Here is the link... https://qbiotics.com/index.php/human-pipeline/ebc-46-humans
As last post said, the PSA increasing, we saw the chemo oncologist, we are content with the slowness of increase and will not be taking chemo, while quality of life and symptoms are not appearing yet. So next appointment in 6 months. Planning a trip to China, in April. Also claimed my superannuation and life insurance (if your in Australia and want to know how, ask me) that took major heat off financially, hopefully the immunology breakthroughs will start appearing soon, but, I'm feeling ok, still plugging away with a sex life of sorts,have dick injections as required and the very recently unassisted yahoo mahboo! Glad I've kept the blood flow happening, even if it is a hassle. Enjoying life most of the time, and loving not working, exercising 3 x times a week with the UQ Study, who would have thought it! Cancer, giving me the life I always wanted!,,,,,hahahahah! Well at least it trimmed off those things I don't want to do! Hope your all well out there??!! fighting on, as Deadpool said, "Cancer is a Shitshow" sure is! Fuck Cancer!
Well here I are again! Hope you're all still alive! Sorry for those that are not, prostate cancer sucks!
Thought I would do my bit and update on this forum.
I have the next round of ADT injections tomorrow, comes around on 3 monthly intervals and I always get a blood test and results before hand.
This time the increase in PSA levels has had a slow down In percentage of increase compared with the previuos results.
Latest increase was 7.3% (I believe this to be good news)
Previous increases as follows: 40.9% 30.16% 33.3% 33.5% 12.5%
Well what's different? Let's hope it's not a lab mistake. Ha! but I will take it as a minor win all the same.
I did go to China and get some herbal medicine. He checked my pulses, I poked out my toungue, he looked at my eyes, he nailed it straight away. Gave me 3 months of Chinese medicine in tablet form.
Also, I have been having juices with kale and turmeric, ginger and veges, fresh. I have started taking aspirin once a day. I have been meditating. I can "bar up" with visual stimuli, but it's nothing to write home about. I would not be lighting any candles around it at this stage, but at least it works. Most of the time the amazing dissapearing cock is imbedded into my never regions like a turtles head..dissapearing out of sight. Occassionally piss myself, great stuff isn't it! Wouldn't be dead for quids, glad I'm not missing out on these experiences!
'Till next time, and remember! Fuck Cancer!
Reading are up 80% in this x month cycle. Bummer man! Worst result thus far.
I thought we were going so good! Sold the house that could be the stress I didn't want.
Don't know what to say except my reading are still relatively low, be the increase of nearly doubling is a worry, think it's best I just keep enjoying life, because I suspect I'm fucked now.
All the very best wishes to you all for Christmas, hope you get through!
Ho! Ho! Ho! Fuck Cancer!
Well, hi my friends in CancerLand! How's your love life! It's another 3 monthly injection of Elegard chemical casteration, yippee! Another round of test results. PSA Reading doubling & then some, every 3 months. No support from medical profestoon alls to date, no scans, no trials, no advise, no contact, no care, what a scam this is! Pack of cunts! Well my GP cares, we will look for a new oncologist for second opinions soon. Heeps of support from loving wife, which is awesome, & we just had 5weeks in Europe, came back looking like a stuffed pig! Fun though! Finland, Estonia, Russia, Portugal, Spain, was great to get out of the stinking heat! So anyhow back to realality, seeing the oncologist in two days time, will see if the appointment goes for more than 5 minutes ($180) this time. Before I give her the boot. Need to find out about trials but from what I have seen, unless I have tried chemo, not eligable, they can stick their chemo up their fucking arse! Reason I have about 1-2 years of life before I get sick. One day at a time. Remember, Fuck Cancer! Good luck lads!
Met with the specialist, and surprise, she sent me for a scan, and mentioned a trial called Lutetium-177 PSMA Therapy, which attaches a nuclear payload to a protein that attaches to the cancer receptors.
Having good results they reckon, anyhow. I vomitted in the scanner when the tracer went through, 100ml of trace was reduced to 60ml and we did it again, cost $$$ the Pet scans.
Intense PSMA uptake is associated with a collection of left sided presavascular lymph nodes, the largest which measures approximately 11mm and demonstrates metabolic activity of 8.14. Allowing for the misregistration between the PET and CT images, intense PSMA uptake also appears to be associated with a subcarnal/penoesophageal lymph node.
There is varying mild to intense PSMA uptake associated with a collection of lymph nodes in the left upper & lower paraaortic nodal, left common iliac & right retrocrural lymph nodal stations. There is further PSMA Avid left pre sacral and left lateral pelvic wall nodes also identified. There is mild stranding in the mesenteric fat towards the left side of the abdomen where there are a few prominent lymph nodes, none of which appear to accumulate PSMA uptake. Varying mild to intense PSMA avid supra and infradiaphragmatic nodes are in keeping with nodal metastasis.
So, they are putting me on Casodex. see what happens in the next 3 months.
Started on additional drug Corsedex. Drop my PSA 41% which was great news!
Getting a few tests done next week so see how I go. It's 4 yrs now, didn't think I would live this long, so there you never know!
Next injection is a six month dose, this will be a big one I reckon, I hate these needles.. anyhow they are keeping me alive.
So glad I didn't do chemo. My choice. No chemo for me. There are so many new drugs coming down the line & new treatments being trialed, just have to hang in there and live as long as we can until the next treatment comes along. Mad researchers & chemists are amazing!
Fuck Cancer! Good luck all my fellow men & respective loved ones & supporters.
Ok, well been 6 months. Just had another 6monthly injection of castration slow release juice into my stomach. Hospital did it this time as I have been in Tasmania the last 6 months. Best injection so far, admin wise hardly any pain ir hruising. Anyhow, my test results are in.. PSA has over double from last result. Bummer man. Thats not good! Heading back home in a few days riding my Harley home, prob see the oncologist for some new meds. I stopped reading YANA as I was getting too depressed. Just completed another mindfulness course, was ok. Living life best I can, but think I'm running out of options. No chemo poison for me..stay cool, stay sharp, live well & Fuck Cancer.
PSA doubling every 3months. They tell me it needs to be doubling every 1 month to get on a medical trial. Arseholes. Got to be sicker first.
Suspect this doubling will soon be foubling! Taking twice the disagr if meds now. Not going to use Doxetexal
Much to my oncologists dismay. Bone scan today as pain in my hip.
Coming up to 4yrs stage 4 cancer.
Getting a bit fatalistic now, with a sprinkling of deluded? Optimism.
Feel like such a loser because I cannot eat well & do all the macrobiotic diet & shit that I should? Fuck it!
Something might happen, but I doubt it.
Good luck my fellows!
Entering an imune therapy trial. Start this Friday. First trial being offered that I didn't have to had Chemo first.
Pembrolizumab (MK 3475)
Enzalutamide
Keynote 641
First good news in over 4 years. I hope it works!
Anyone tryed it? Results? Good? Bad? Crickets?
So still on the ADT plus the Pembrolizumab (MK 3475)(Keytruda) + Enzalutamide Keynote 641.
Amazingly this trial one of the exemptions was docetaxel. So for four & half years of telling my oncologist to stick their chemo up their arse, I end up on a trial that wants people like me! Yeah! Fuck cancer.
Well had results ftom second session of clinical trial: Pembrolizumab (MK 3475)(Keytruda) + Enzalutamide Keynote 641
PSA was 25 then dropped to 12 now dropped to 6.2 so something is working. Feeling pretty good. Bit of a head ache and the runs on third treatment. Rash after 1st treatment has gone.
Anyone else on this trial? Message me!
So, on the trial. MK 3475)(Keytruda) + Enzalutamide Keynote 641
Pembrolizumab & Enzalutamide
Plus Eleguard 6 monthly injections.
Just had my 7th cycle (every 3 weeks) every 9 weeks I get a CTSCAN & BONE SCAN.
PSA is down to 3 but looks to be bottomed out. Maybe I'm getting the placebo?
I only write here now as it has the best timeline of my treatment and I refer back to this page. No one contacts me or offers any support, I get it. no judgement.
I haven't been able to find anyone else on this trial yet.
Being 5 yrs now stage 4. I'm in the 31% that are still alive.
God bless & Fuck Cancer!
Well it's 6 years now & I'm 1 Year into this medical trial. I feel pretty good, PSA is going up again but slowly, scans showing small tumours, overall it's good to he here. Walking more, moving more and living well. Till then...
PSA is 6. And rising again, looks like the immune therapy slash plecebo is wearing off. Increasing faster now and I have about 8 treatments left to complete the trial. Don't know what I will do next, but I know it won't be chemo....unless pain or fuck knows, what I do know is there is no cure for cancer...just time extension, with a crappy body, no energy, no sex life, no job, but still here right? Look on the bright side and all that...yeah, skippipydodah and read someone else's inspirational bullshit. Prostate cancer is a shit sandwich.
Hey gang,
just finished my two year trial of Keytruda plus enzalutamide.
Have to wait for official unblinding to see is I was getting the placebo or not.
So I have two options left. Chemo or Lutetium.
lutetium will eat into our finances as it's 10k a pop plus all the scanning etc.
what will we do? I wish I had someone to help me who has been through this.
So thankful to my loving wife, I fear for her.
Hey guys,
checking in. Just on the ADT now with the only option left being Chemo. Or Lutetium PSMA therapy | which will send us broke. PSA doubling every 3 months. Going to change oncologist and GP. Have changed to vegetable diet and looks like I have given myself diabetes! oh well, I'm nervous and fears are back. Hoping to last another two years to nake our 25th wedding anniversary. Hopefully I can get on another trial soon, once covid calms down.
Hey guys,
checking in. Just on the ADT now with the only option left being Chemo. Or Lutetium PSMA therapy | which will send us broke. PSA doubling every 3 months. Going to change oncologist and GP. Have changed to vegetable diet and looks like I have given myself diabetes! oh well, I'm nervous and fears are back. Hoping to last another two years to nake our 25th wedding anniversary. Hopefully I can get on another trial soon, once covid calms down.
Hey guys,
checking in. Just on the ADT now with the only option left being Chemo. Or Lutetium PSMA therapy | which will send us broke. PSA doubling every 3 months. Going to change oncologist and GP. Have changed to vegetable diet and looks like I have given myself diabetes! oh well, I'm nervous and fears are back. Hoping to last another two years to nake our 25th wedding anniversary. Hopefully I can get on another trial soon, once covid calms down.
So...,the Aberaterone isn't working, so I have surrendered to Chemo with my first dose of poison next week. Plan is to for it until I cannot, then go for the Letitium option and have that empty my and my wife's bank account. Besides that, life is good. Building a Norton Commando at the moment, looks like it was dragged out of a swamp, perfect for me. Not much else to say here. Good luck and remember, fuck cancer.
Well, Gidday all, had second Chemo Docetaxel. But before the girst one, which got delayed, I had 5 x rounds of radiation to T3 T9-12 in my spine gor pain. That made me pretty sick, but it wirked. Big ches cough this week, bronchitis like. Heart was jumping around, they said to have more water, tired but not vomiting or anything, just handing it over at the momemt, going with the flow, like a broken man, with a final glunt in his eye..., they think the PSA has plateaued.
PSA 94. going up. Chemo appears to have less effect. I've had 9 off 10 treatments and cannot wait to finish. Running out of options again, but we have been here before haven't we? 9th year of Stage 4 csncer. What a trip, so fat and tired now, walking is hard, motivation low, heavy heart. So hard on my loving wife. Looking forward to a couple of months in Tasmania. hope you're all doing the best versions of this madness! Blessings,
So, finished chemo, it's slightly effective, halved my PsA over 30 weeks. Booked in for Lutitium now. It's not covered by healh so it's expensive. First treatment is in 3 weeks. Scans show cancer in spine, ribs, pelvis, chest, lymph nodes, yeah, I'm going off ADT. Had my last inject in March 2023. I'm running out of options, this is getting me. So I would like to grow some hair and testosterone back before I ho into palative care. I think my bones are in trouble, might have to stop riding motorcycles. I've decided I will get a PS4 and be a bed bound gamer to pass the time! Feel blessed, love my wife family friends.
So they took me off Lutetium 177 after second treatment as cancer was progressing. Had a round of chemo this morning. Cabizdacel (sic) hoping to recieve treatment called Actinium 225 similar to Lutitium but might work. Chemo is for interim treatment. I'm not going to get antmore ADT my decision. I want all the strength I can muster for the coming months. Getting to the pointy end now guys! Nearly nine years now and what a trip. I kmow I'm in the 30% that are still here and grateful for that! On painkillers now opiates. Bummer. But got to address the pain or I'm a wounded grizzly bear!
Hey gang!
My PSA dropped from 180 to 150 from last chemo. That's got to be a good thing?
Hi gang! PSA 170 I'm So much pain. 7-8 out 10. Painkillers becoming ineffective? Might have to go to hospital today. Wife is ready to take me if required. Will double up next dose of endone and see what happens. Hopefully this flare up it's just because I went for a motorcycle ride a couple of days ago. Immature! I know! But man did I have some fun. Bone mets spine, hips, skull, leg. chest. Not in vitals yet. Sciatic nerve is raw, muscles unable to support throwing legs into bed sideways. Every movement now has to be conducted in mindfulness. Blessing to you all!
PSA 190, looks like we will hit double century soon. At 9 years of Stage 4 metastasis prostate cancer. I've had over 62 professional treatments, including surgery, radiation, chemotherapy, immunotherapy, (with bonus type 1 diabetes side effect) drugs, ADT & other hormones, steroids, other treatments, weight gain, muscle loss, pain, spine cancer, hips, chest, legs, pelvis, shoulders, peripheral neuropathy in feet, loss of taste, lethargy, fatigue, depression, Loss, I can honestly say I'm Broken. I'm Existing to Exist. Every task is so hard. Moving is hard, hope is hard, gratitude is still there, it's my foundation, clean hot & cold flowing water, clean, dry bed, peacetime country....gratitude for the needs, I've not much desire for wants, fantasy has left the game. I love, can be loved and receive love, as I hit the final turn before the straight, limping, staggering, hurt and uncomfortable, embarrassed, carrying shame for being a burden, I always knew it would get me, from first diagnosed, I knew...
PSA 310
Spent 9 days in hospital getting pain management under control. Morphine for 6 days, what a wonder drug! 15 minutes later no pain! The Cabazataxel chemo wasn't working so we had PET scans and pmsa scans to see whats going on. More metastatic action, so had given 5 rounds of radiation into left hip and ribs to help pain and back on dozataxel chemo and another bag of retrochemo, it's old drug, apparently super toxic, but side effects drugs have made have a comeback, used for ovarian cancer, got the name somewhere downstairs but too lazy to go get it, but it's the last trick in the bag. They got nothing after this, but we have been here before!
PSA down to 71 Wow! never thought I would be happy to see this happen. Still in the game.! More life for me. I have the Volunteered Assisted Death approval ready to go if it gets too ugly. Don't have to use it, but grateful for the option down the track if it gets ugly, I can leave with some remanence of dignity. Fuck Cancer! Live Life.
PSA 73 there was a week delay as platelets were 70, which is too low for chemo. Platelets now 93 so we go ahead with another round of chemo. Went to a wedding in Port Douglas, brothers son, stayed in the resort, managed to go to wedding in the chapel, part of reception, felt sick but made an appearance, thats the main thing. New trial on TV news. PA hospital in Brisbane. Will research and see if I can get in later in the year. Who knows? One day at a time, I'm out of my funk and ready to live a bit more! Ding! ding! Get back in the ring! Wish all you well and especially our loved ones who do it tougher from the sidelines. Cancer, an unwelcome shadow guest that refuses to leave.
PSA 50
Date to dream? What s great result and even more active. No treatment due to low platelets today but we will be on again next week. I have halved my pain killer dosage of Targin from 60 x twice a day to 20mgs daytime 30mgs Nightime. feeling hopeful & grateful of extra time on the right side of the grass.
Fuck Cancer where does all the money go?! Blessings to you men and your supporters and loved ones.
PSA 50
Date to dream? What s great result and even more active. No treatment due to low platelets today but we will be on again next week. I have halved my pain killer dosage of Targin from 60 x twice a day to 20mgs daytime 30mgs Nightime. feeling hopeful & grateful of extra time on the right side of the grass.
Fuck Cancer where does all the money go?! Blessings to you men and your supporters and loved ones.
Results from Chemo Round 3 Treatment #6 PSA 37 amazing down from 45 last time.
Had a really good month. I get treatment every month now instead of three weekly as white platelets need the extra week to recover. Weight is a problem and touching 110kgs now. Had a lung infection, was hard to walk from couch to kitchen. Antibiotics cleared it up. Had my eldest brother come 1900 klms to help me finish the Norton Commando, started first kick, it's now roadworthy and registered. Walking around the block to regain some fitness, terrible really how de-conditioned I've become.
Anyhow friends, just checking in, still here, grateful to every day!
PSA 65 .....going back up....
10 year Cancerversary today.
So I've put on my Hawaiian Shirt that my beautiful wife bought me, it's a custom Hawaiian shirt with pictures of my dog plastered all over it. Trying to be brave, but I just feel like busting into tears! 10 years of tests, life changing operations, life saving procedures, medical trials, side-effects, forced retirement, gratitude, awareness, purpose & despair, faith & negativity, love and anger, spare time, wasted time and running out of time. I'm so glad my manhood isn't defined by conventional opinion. Because I have none of those traits left, physically, I'm a wreck, overwhelmed by this "journey". I know love, honour, determination, faith, trusting, forgiveness, respect, and understand the St. Francis prayer. I've been on YANA nearly the whole trip, thus far, and will continue to, my invisible friends! My fellow truthseekers, my fellow cancer journeymen. 10 years since diagnosed. Optimistically, Ten years was all I could of possibly hoped for.
PSA 81.
Doctor Has taken me off Chemotherapy as it is no longer working. My right arm is no longer working properly either with loss of 80% of strength. Battling to turn a door nob. So currently I have no treatments. Doctor has given me referral to 3 x Radiologists. One to see if we can zap my spine to help with pain. The other two are for possible trials, but my research says they are both trialing Lutetium 177 which I've had before for no effect. Anyhow we will see what they say. Wow! I feel exposed and alone with all treatments having been exhausted. What happens next? What can I expect? I will get these answers soon I suspect. This isn't a fight, it's a massacre, it's an invasion by stealth, it's a journey of a thousand side roads and back alleys, it's a delay of the inevitable, it has no return address, it has no blame, no one to answer to. It's a learning curve of useless information, it's love wasting time, it's time using love. It's a future plan that has no start. It's "fuck you cancer".
Blackie's e-mail address is: blackweb170 AT gmail.com (replace "AT" with "@")
