I'm currently on an intermittent break and have mild pain in my spine(mid back). Dr. wants to do scans. What is the point of the scan if I'm just going to start Lupron right after the scan? Is it because the doctor wants a confirmation that the cancer is metastatic and then can offer (with insurance approval) Xtandi or Zytiga or Erladea to the Lupron? How much is radiation concern getting CT and bone scans every 18 months or so?
thanks,
George
The scan can act as a beginning marker to measure your progress or lack of progress.
You shouldn’t sweat the radiation dosage from scans but these days the new ctpet scans with PSMA and others do a much better job of finding mets which could change treatment and qualify you for the drug or other treatment which could also be spot radiation. The trouble is finding an appropriate clinical trial for PSMA scans and qualifying. Axumin is the easiest to find and qualify for and is FDA approved so no clinical trial is needed. You need a rising PSA to be considered a recurrence. What kind of scan is your doc recommending?
As far as back pain, there are lots of potential causes for such pain and a simple MRI may be all you need. If your Psa is under control it’s probably not cancer.
Thanks B60, They call it recurrent but I call it failed treatment. That was 3-4 years ago. They have me scheduled for dual abdomen CT scan and NM BONE SCAN WHOLE BODY SCAN. Doesn't sound like axumin. I guess what Im not clear on is even if I do Axumin or PSMA pet then what do they do for treatment that's any better than just doing Lupron with Xtandi or Zytiga? I could get into the PSMA tests and biopsies at NIH but that all seems experimental and not proven have better outcomes than just taking meds.
I have a feeling that you're right about the back. I have been doing more stretches for the back, back exercises and lots of time in the car. Someone else said that if my PSA is increasing at the same rate as usual then maybe I shouldn't be as concerned as I would if the PSA spiked at a faster rate. A second doctor told me the scans probably aren't necessary, its just more money and time spent doing something that is unlikely to change the treatment protocol. I'm having a hard time trying to decide if I should pressure an MO to start adding Xtandi or Zytiga while Im still sensitive to Lupron. It's easy to say to add another drug for longer life but I think most guys have a noticeable drop in quality of life after adding Zytiga or Xtandi.
It sounds like less men are getting second cancers from the scans due to less radiation emission from the machines.
My nuclear body scan showed "...too many Mets to count..."and PSA 1300+.
Lupron only SOC treatment offered. PSA now less than 2 and MO says no scan needed now as my treatment wouldn't change no matter what it showed.
2Dee
What was the pain like when you had a 1300 PSA? Is there pain now? Did you have spinal Mets or spinal compression?
Pain. Pretty much very individual. I'm USMC and used to living with lots of pain with no real problems until you start adding other high end pain...
For about first 3mo of 2018 I lost 55lbs, didn't eat much, really didn't sleep at all, just some exhaustion for a few minutes here and there. The pain was really immense during that time. Just counted the seconds, very slowly. No drug or common treatment seemed to help at all. My PCa was in the process of spreading to my entire skeleton. Bone scan at Dx says "...too many to count..."
Pain now 1.5 yr later is fairly under control with only a couple of Norco, 100-200mg of CBD oil, around 45mg of THC lozenges, and an occasional Motrin. I can sleep some and enjoy a little life.
If that is the pain the we have to look forward to when mets and or Lupron make our bones so weak they can break then not sure I will endure that again. Right now I work pretty hard on determining the minimum pain med/treatment I need to get by each day. I want to save more/stronger for later as that is surely destined to come sometime??
2Dee
Thanks 2 Dee. There's no doubt that,for most people, life is no longer enjoyable if there is serious, continuous pain. I feel for everyone in that situation. That's why some countries have assisted death for people in that situation. We all just need to pray for low pain and long life and hope we don't have severe pain for long periods.
Best of luck
George
Don’t worry about secondary cancers just treat the one you have. You’re getting old fashioned scans. What your Psa trend? I too am hormone sensitive after six years and recently switched to estradiol patches. See ncbi.nlm.nih.gov/pmc/articl...
Bob
Thanks Bob, Did you already use Lupron or another ADT? MY PSA trend is the same as its been since the treatment failure 4 years ago. It doubles every 3-4 weeks when I'm not on Lupron. What is your doubling time when not on treatments?
You think that Axumin is what I should be getting? Why do you think they are using the old style scans if the Axumin is in their hospital?
I read about estradiol patches. I know there are differing opinions from some goes on this site, about estradiol. How do you get these things approved anyway. My MO at Duke scoffs at all my questions that are different than what he thinks.
George
George
I was on Lupron , casodex and dutasteride on intermittent basis since bcr in 2014 then switched to trelstar. Then switched to estradiol. I asked my urologist if he would write a script and he readily agreed after I showed him this: ctu.mrc.ac.uk/media/1282/c-...
He has since taken all his patients off Lupron and on estradiol patches!
What’s his name?
George, I had nuclear bone scan and a soft tissue CT scan immediately after initial diagnosis of prostate cancer through the Urologist . It was my first base line. When I decided on primary treatment, the Brachytherapy RO also did the same. As I also had IMRT as a part of the primary treatment and had another set of scans. Both ROs had the same scans when after nine months my PSA did not come down. These showed metastatic lesions and another set of baseline scans by the Medical Oncologist. I have had 25 sets of scans since the first one in February 2003 and the last in 2016. Upshot, 24 sets of scans through 2010 (7 years) Of course I also became a research guinea pig.... they won’t hurt you. 
they are a vital total tool for treatment.
Gourd Dancer
Thanks GD, DID I EVER ASK YOU BEFORE WHAT YOUR POST TREATMENT DOUBLING TIME WAS AND YOUR GLEASON? SOMETIMES I REPEAT MYSELF. I HAD THE SCANS ON MONDAY. THEY DIDN'T SEE ANY CANCER WHICH IS GREAT BUT NOW I HAVE TO FIGURE OUT WHAT'S CAUSING ALL MY NEW BACK ISSUES IN PLACES I'VE NEVER HAD PAIN PROBLEMS BEFORE.
GEORGE
George, my Gleason was (4+3). Not once have I looked at Doubling Time. It’s a variable mean that meant nothing to me. I looked at PSA and if there was a rise or a decrease and interpreted from real numbers. For example, when my PSA did not come down after initial treatment..... it could be infection or it could mean metastatic lesions. I treatment for infection and inflammation, when that did not bring down PSA, then only the later came into play and it was confirmed by changes in baseline Nuclear Bone Scan and soft tissue CT scan.
Pain as we get older is normal....usually muscle fatigue or arthritis. Determining the root cause is paramount. Worrying is the death of us all. Find a specific pro and find out. Yes, it could be spread, however, your pain could be part of the aging process.
Good luck.
George - The cancer moves through the body like a grass fire. When the PSA is low, the body's immune system slowly kills the "known" mets and new ones start up somewhere else, so a scan soon becomes history. You can usually put your finger on the spots because they (and nearby) are tender, while a non-cancer problem tends to be more localised. The PSA is your best guide if you are doing OK - more than about 1% a day needs action - i.e. doubling every 70 days.
As you may know from my posts, I use (22 months and counting) very low dose Xtandi and weekly 25 grams of Sodium Ascorbate via IV to actually kill some cancer and help my immune system to keep up. This is a very safe and zero side effect process (and fraction of the price). Without it, I would soon be gone as my PSA climbs at about 5% a day in between kills.
Thanks David, I learn new things on here every week. One thing I would point out is that the psa # is not always correlated with volume. I have more psa per cancer volume than the average man. When my psa was 38 they didn't see anything on scans. My doubling time is very fast post treatment, at 3-4 weeks but haven't had any mets visible yet. I guess the bigger question is whether to add Xtandi to the Lupron while I'm still hormone sensitive.
Do you get Vit C IVs at a licensed naturopath's office? Are there any studies showing that it works on slowing cancer? Have other guys on this site stated that it helped them?
What's the very lose dose amount of Xtandi? Will the docs prescribe it in various doses? My MO wants to add Xtandi before Zytiga for me because he worries that my coronary artery disease could be more negatively affected by Zytiga. I like the concept of starting Xtandi at a lower dose to make it more tolerable.
George
Lets take these one at a time (and also see the other post of today):
PSA only makes sense if it is a measure of the kill rate. If you have 38 and nothing visible, I would interpret this as your immune system doing a fine job and/or you have a lot of cancer cells on the loose. After Chemo, a low PSA just means the immune system is trashed and no killing is going on - but a few days later all hell breaks lose as the body finds a new supply of cancer to fight all over the body and the immune system starts working again.
I would suggest Xtandi as it is intrinsically safer. Zytiga needs the addition of vital things that have gone missing, and these cortisones are tricky to get right (and I suspect not all the missing ones are added which ends the life of the Zytiga run). Xtandi is a blocker, Zytiga is a production suppressor. Several posts have been made by guys on part doses with success. I do not use Xtandi as a blocker - 1 capsule a week is nowhere near enough to do this. But it somehow weakens the cancer cells and the Vit C kills a lot more of them.
Nearly all the guys on this forum use a "by the Book" onco. There is no mention of the immune system, or Vit C, or many other things in there, so effectively 90% of the information needed to make decisions is missing. A couple have tried Vit C in its own, but that soon loses potency.
I get a nurse to come to my home to stick the catheter in and set up the drip. Much cheaper than a Clinic!
When I started on Xtandi is used the full dose for 2 weeks and Vit C every 4 days (which dropped my PSA nice and quickly) Then I dropped to 2, then 1, then 1 a week! I suggest use the full dose at least for a week or so, then drop down to 2 for a month and check. Xtandi on its own will usually do a good job - adding Vit C makes it affordable! It also eliminates the side effects of the Xtandi if you are only taking 1 or 2 a week. But then it is the Vit C that is doing the work, not the Xtandi.
In the end, because we are all different, you have to keep experimenting and adjusting. You have to drive this process as the onco will probably freak that this is not "by the book". Low dose Xtandi is not part of their experience. Good luck!
Good insights David. The thing that gets me is that MOs base everything on studies that show one effective way of doing it but pretend that any other way is no good because there is no evidence. It's like studying one military attack that was successful and saying you cant attack in any other formation because its not proven, even though our education and instincts tell us there are other ways of winning a battle.
Regarding your doses, what is the standard full-dose? When you say 2, do you mean 2 per day, and then 1 per day and then 1 per week?
I suppose there are no studies showing the Vit C IV slowing cancer, right? Probably nobody ever did a study one it?
George - 4 x 40mg per day is the standard Xtandi dose. So yes - 2 per day is half, 1 per day a quarter (that has been reported on this forum to work for months). Even 1 per day is a fortune if you are paying for it, which is why I kept going down till I hit 1 per week (late the night before the weekly 25gm Vit C IV). I increased that a bit lately (I experiment with doses) as the 1 per week only worked for about 9 months (PSA <0.1). The box I got in May 2018 ran out this past week, and I had to get another.
The real dangers of Xtandi are death from falling over, heart problems from Potassium imbalances, wobbly Blood Pressure and pulse. It kills about 30% of the gut biome. None of these apply at the low doses (the gut largely recovers in the days with no dose).
There never will be a "proper" Vit C IV trial, as nobody will fund it. If the word spreads in the "West" (it already has in the East where money is short and fractional dosage packages are more available), the Cancer Money Machine stands to lose many billions of dollars because combo dosages would go down radically (at a guess I would think they would drop sales by 75%). They are quick to jump on any "leaks" (I have been thrown off other sites for mentioning Vit C - Kudos to this Forum). No University will use Vit C, as that would cut off their funding. The whole subject has become "taboo".
The 1978 Mayo Clinic trial keeps getting quoted by Oncos as a "failure" (and they use this as the excuse not to use Vit C themselves), but that trial proved what we already know - Vit C orally, even in high doses, has little effect on killing cancer. Dah!
If you Google "Vitamin IV clinic near me" you may be surprised to find out how many people have already found out.
I don't know how much is have to pay for xtandi or zytiga. Whatever my insurance doesn't cover i guess. Would you take the full dose of you had insurance paying for it?
I am taking probiotics several strains and that has healed my gastritis recently after aspirin antibiotics weakened the biome. Proton pump inhibitors made it worse. I suppose the probiotics might counter the xtandi damage to the biome, right?
I have just got a new box of Xtandi, and doing a new round of experiments - right now on full dose for a few days (and starting to feel side effects). I will check PSA results next week, and drop in steps until the PSA goes up again because I have gone too little. I did this nearly 2 years ago, but things change and I need to re-test to try and find the new best balance of cost and effect (1 x 25gm Vit C approximates the cost of 1 Xtandi capsule - I already know 2 x 25gm Vit C gives a much better kill than 1 extra Xtandi). I see no need to take a full dose permanently - I am doing it now to get another data point that I can come back to in the future if I have to.
Probiotics do help, but the usual 6 strains is far short of the 10,000 or so that should be there, and also cannot replace the 3,000 that get killed. Chemo kills about 9,500 strains. Some say there are over 100,000 strains (even 400,000), so these numbers are just the popular guess as the actual number is not known. The gut biome is a brand new gold mine of medical research.
We need a "clever" capsule that can capture some gut biome before we do a kill-off. Then swallow it again when the dust settles. But it needs a delayed release so it gets back into the intestines as the stomach would kill most of them. Some men get a fecal implant from their wife to speed gut recovery.
They don't need to renew their wedding vows after getting a fecal transplant. I think that qualifies as a renewed commitment 😋
My back started to get serious pain in the middle of the night after i pushed on it a little before bed to see what it felt like. With Sharp pains like that in guessing it's a met in the spine, which is surprising with psa of 4.5.
Not surprising at all - you can get niggles right down to 0.1. At 4.5 there is quite a lot going on. That kill rate is enough to inflame quite a big patch around the cancer as your body gets on with the job of removing millions of corpses of cancer cells, and the attempt to encapsulate what it cannot immediately kill - which causes more inflammation and pain. The garbage collection in the bones takes a long time - months. It takes more than a year for the body to deal with spine mets, and even Vit C has to do the kill layer by layer.
A PSA of 4.5 is OK as long as it is steady or going down.
It's never steady except when in on lupron. I'm in an intermittent break right now so it is always rising until i start the lupron again
The latest trick seems to be to go onto estrogen patches while on the ADT holiday, and that seems to keep the PSA very low for a while. That is exactly what I am planning to put together over the next few months. In theory, the estrogen will be less damaging to the immune system because it is a more natural product than the Leuprolelin Acetate which poisons the balls into submission.
Like Jacob, I was thrown down a well, and I want to get out. Right now, my immune system is still far too damaged to "go it alone", but the more I can minimise the poisons, the better my chances of finding a ladder.
well said!
I get scans every 6 months, the doctor can use the old scans to see if the cancer Mets have gotten any bigger or not.
Larry
What type of scan do you get?
Bob
Full body ct scan with contrast and a nuclear bone scan
How do the scans inform your treatment? Is your doc going to change to different treatments if he see too much new progression? Is that the reason for the scans? It sounds like people aren't too worried about excessive scans causing second cancers in the body.
George
As I said, if a few bone mets are found it’s been shown that if they’re in a location safe to radiate , sbrt slows progression . Excess radiation is not a worry and your RO knows how much you can safely get. There’s a thread on the subject of sbrt efficacy on this site.
Bob
ok thanks, I thought it might be more of a concern because I had high dose brachy and IMRT treatment previously.
I would recommend a scan. We thought my husband’s back pain was from exercise. Turned out to be progression to his vertebra and ended up with a compression fracture and radiation treatment. Still recovering from fracture 12 weeks after end of radiation. Wish we had checked out the pain earlier.
GeorgeGlass and canoetripper:
My point is this: back pain is usually from muscle strain or slipped disc which an orthopedic surgeon can diagnose, sometimes with a simple X-ray. I’ve had this problem a few times from lifting too much weight or sports. I’ve gotten epidural shots for sciatica and have done physical therapy a few times to strengthen back muscles . In fact, I’m doing it currently.
Cancer is suspected only if PSA is rising alarmingly.
good points, I agree with you. I have had several back problems get worse the last couple years probably related to the Lupron. I think it weakens the tendons and ligaments too because my knees and back had trouble when I went skiing last year and Ive never had that problem before.
good point as well. I guess this is what makes the doctors job hard. All patients respond differently. From break 60's point, wouldn't an x-ray have shown that without having to get bone scans and ct scans? Was it a cancer Met that caused the pain or just deterioration from ADT?
George
See this link about spinal mets.
ncbi.nlm.nih.gov/pmc/articl...
It’s not comforting for guys like you and me with fast PSA doubling times to realize that we have a high probability of getting spine mets.
I recently had a cat scan with and without contrast dye to see why I had pain in lower right side of my back. It found a 2mm kidney stone which I was told is no big deal but no cancer mets. I’ve been doing PT for three weeks and pain is gone. I believe I strained it doing leg exercises.
Every time I’ve stopped traditional ADT I’ve had recurrence just like you so that’s why I decided to switch to estradiol patches “ permanently “ ( that is until they stop working!)
As you can see I’ve hit my bone mets with SBRT which is why I had the new ctpet scans to find them. Luckily my mets have been oligomets and PCa hasn’t returned anyplace I’ve zapped.
Good to hear things are working pretty well for you so far. Was the Lupron/ADT still working for you when you switched to Estradiol patches, so you can go back to it if needed?
Yes it was working but it was trelstar not Lupron ( same shit) . I had gone on holiday again ( stopped it) and Psa quickly started to rise.
See other guy's answers I don't have a freaking clue...
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 09/22/2019 4:09 PM DST
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