Had my Xgeva shot today, and while I was in the office I finally was able to get a CD-ROM with my scans on them. I thought it would be fun and informative to share them here
The one on the left was taken about a month after diagnosis, and has been called a "super scan", which basically means that the bones/mets absorbed so much tracer that you have trouble seeing the soft tissues, kidneys, and bladder. My bladder was visible in the front view, but barely visible in the back view. Don't need no fancy PMSA or PET scans to find all those tumors. Did I mention the left half of my prostate barely had any cancer in it?
The one on the right was taken after completing chemo, but before starting Abiraterone. There's still hot spots in there, but you can see the outline of my body, my kidneys are clearly visible in the back view, and my bladder is brightly shining from my crotch. My MO was very happy with the results.
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tom67inMA
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MF that’s just in time for Halloween . Scares me just looking at it . I haven’t seen mine . Keep on keeping on buddy ... heading in the proper direction ...
It might also be a good attention getter for Prostate Cancer Awareness Month. That said, I was also thinking of using the "before" scan as my Facebook profile picture for Halloween
Feeling very good overall. I still have pain in the ribs and the back/hip on my right side, but generally that flares up after having a particularly busy weekend involving long runs and cutting/splitting firewood. Only using Celebrex with occasional Tylenol added for pain control.
I should have also mentioned that I complained of similar pains throughout most of chemotherapy, so pain is not a great indicator of whether things are getting better or worse.
Thanks! My wife and MO are very encouraged. I'm a weird mix of enthusiasm and anxiety, which is to say treatment messes with my head and body to a certain extent.
I had trouble as well. If there are .dcm files on the disc, you can download a DICOM viewer such as RadiAnt (radiantviewer.com) and use that to open the data files.
Just tried radiantviewer, much better that MicroDicom. Course I don't understand what any of it means, but pretty cool if you want to scare the hell out yourself. Enjoy.
Super, Tom! Maybe you can Photoshop some color into the "Before" scan and use it as a Christmas decoration. But seriously, folks, I think you can expect the remaining hotspots to continue to fade with time.
Good to see that chemo worked as well as it has after diagnosis, but you have a long way to go yet, and although you might not like PsMa Ga68 PET/CT scans you might benefit with those, and see more detail and if you don't like more chemo then you may find Lu177 would work better than chemo. I'd keep an open mind. Your scans are far worse that I ever saw in my own scans, and chemo failed, hence I went to Lu177, and am riding a bicycle 140km a week now after a lull due to a sore hip, which turned out to be due to me not doing enough stretching exercises, but made worse by a few pea sized bone mets, now healing up.
Psa before chemo, 12, after 5 shots, 46. then Psa fell to 25 waiting a month for Lu177, then after 4 x Lu177 shots last May, Psa 1.6, then now its 0.41.
Chemo is usually given here after Zytiga or Xtandi fails, as they do. But after chemo the action by Zytiga or Xtandi will be renewed, but for how long is anyone's guess. AFAIK, these two drugs are hormonal manipulation agents and they give lower Psa while effective but more mets were seen in me after taking Zytiga, so IMHO, better to go for remedies that kill the Pca cells rather than just slow things down.
Side effects of 5 x chemo shots were worse and longer lasting than those from Lu177.
Your reply is refreshing after a series of friends and relatives basically asking me "So, you're all cured now?" which put me in the unfortunate position of having to explain that I still have cancer and will be on treatment for life.
It's my MO who has been ordering the scans, and so far he hasn't seen a need for an updated CT scan despite my requests. I'm not ready to go out and seek a second opinion right now, as I'm too busy taking advantage of my improved health at the moment.
My PSA went from 200 to 2 on ADT only, then from 2 to 0.02 during chemo, during which time my ALP fell like a rock. I've been on Abiraterone for about 4 months now (started just after the May scan) and that dropped my PSA down to <0.01. Hopefully next step when I see the MO in October is to get another scan to see what Abiraterone has done.
Also, Lu177 is not approved here and only available in a trial. Given my current response to treatment, it would probably be very difficult to find any doctor who would recommend trying something new at this point.
BTW, haven't you heard that an Abiraterone metabolite might kill cancer cells? From ncbi.nlm.nih.gov/pmc/articl... "However, advocates of abiraterone incriminate an active D4A metabolite of abiraterone to have its antitumor effects."
At the moment, and going on what your Psa numbers are, you have got a spectacularly good response from ADT, chemo, and Abiraterone, and my doctor would be saying that getting more scans of any kind would be useless because he would think there is nothing big enough for any scan to see.
When I had full body CT scans a couple of times with one just after diagnosis and another years later, well before PsMa scans became available, they could see my arthritis but not see any Pca.
AFAIK, it would be useless to get Lu177 now if PsMa Ga68 scans did not show any areas where there was high uptake of the Ga68.
Ga68 is a radioactive isotope of gallium, a strange metal that dissolves in water, but not needed by a body. But when made radioactive with a short half life of days, it is a fine emitter of radiation that is seen in PsMa scans because it may gather in huge numbers of molecules and bound to Pca sites using another strange chemical called a "ligand" which makes the Ga68 attach itself to Pca cells, wherever they are, if the Pca cells have the right chemistry to allow this to happen, aka PsMa avidity.
I was told that PsMa Ga68 scans were most effective when Psa was between 2 and 10, and you are so far below this that these scans would probably show nothing.
You may well have Pca that could become a threat later, but later is not now, and so tell your friends and relatives that your Pca is under control, but not cured.
If they want to know more, they'd have to study more, and that's too hard for many ppl so your friends just need to know you are going to be around for a long while and not to worry now.
People who don't have any cancer or chronic disease just don't really (yet) understand what its like to live with an inner enemy. Mine was Puff the Magic Prostate Grenade, and it could have exploded badly and quickly, but instead exploded real slowly, generating baby Puffs and sending them off around my body where they would have all exploded later to kill me but the doctors intervened with ADT, EBRT, Casodex, more IMRT, Zytiga, chemo, Lu177 and Xtandi. Frankly, father Puff is now much displeased, and in a mangled mess at my PG which could not be removed back in 2010, because Puff had grown fat, and surrounded my PG so he could not be surgically removed lest it cause Puff to explode badly or make a real mess of me, who is just a moderately tolerable bloke.
My Psa went up and down like a yo-yo since 2009, getting up to 50 just once after 5 chemo shots. But its never been down to <0.01, undetectable, and is now 0.4, so its a big worry if I choose to worry, but not a worry if I choose not to. Luckily, it seems that sons and grandsons of father Puff at my PG ie, the main tumour and damn mets have all responded to the successive treatments, so I don't expect to be overwhelmed by some of my Pca to have mutated into something completely untreatable and fast growing as I have witnessed in some men far more unfortunate than you or me.
Count your blessings, live your life, worry later, but keep a close eye on Psa, and the time it takes for Psa to double. You may be amoung the very lucky few whose Psa remains undetectable for many years, and that's remission.
Most of us are here because remission just isn't happening, and probably never will happen, but we live in hope.
I will set off in an hour on a little cycle ride across town to see a very beautiful lady doctor, Dr Klieven, at Canberra Hospital, and its a follow up meeting to take a review of radiation treatments and how she things are now for me. I don't expect she has to arrange for any more EBRT for me, or IMRT, which I think our hospital has just obtained with Calypso method, better than the old fashioned EBRT that has worse side effects.
Its a 42km round trip if I include returning along the track beside a lake, so a very pleasant outing awaits, and I don't much care what friends or relatives think about me. None of them are healthy enough to cycle with me.
At 72, I could say I ain't doin' too bad for an old bar stud.
Nature is not insisting I begin to un-live just yet.
Are you in Australia? If so you probably have a metric PSA, where mine is in old English units But seriously, I have intraductal carcinoma which is known for low PSA output, so comparing numbers may be apples and oranges.
Thanks for the perspective on trying to explain cancer to normal people, still laughing at Puff!
I'm in Oz, and I never have thought about difference in old English Units and metric units for Psa.
Perhaps having an English Psa of 0.01 is like having a nip, a small glass used for whisky, wheras here its 10ml.
But I jest, because here the Psa is measured in ug/L and 0.4 is below the "normal range" of 0.55 to 5.5ug/L.
Up to now, I assumed Psa was always measured in the same units, and not in say spoon-fulls per pint, or spits per quart, and 1 spit per quart is a small amount, and one drop per gallon is maybe even less.
From what you said about having Psa going from 200 to 2 and then down to <0.01 is probably very OK if the units are ug/L, because less than 0.01ug/L is considered close to undetectable.
So if you have intraductal Pca, ( not sure what that is ) and a low Psa for the amount of Pca present, sometimes measured in a volume of say mL, or cc, and if they said ya got a pint of Pca in ya, ya'd be a bit of a sick bloke, IMHO.
So then your results could be fooling you. I know about that, because many men diagnosed with Gleason 9 and inoperable like me have fairly high Psa of maybe up to 100, wheras mine was a low 6. The result of that was that my Pca grew into a Big Fat Puff the Magic Prostate Grenade before anyone knew about that, ie, doctors and myself were fooled by this beastie, because action is not thought necessary until Psa > 5.5.
Thus I was diagnosed TOO LATE. I had had yearly Psa tests and expected to get Pca. This meant a long expensive series of treatments with side effects that have in effect aged me prematurely.
Now I do know that the older I get, the better I woz, but getting diagnosed too late for surgery effectively meant I sure do know how much better I woz, a bloomin lot more than had I been diagnosed in 2004.
So I say to all blokes, get your PG removed if Psa > 3.0. Don't dither about.
Having Psa of 3 is 3 times the normal Psa for a man of 60 who is never going to be troubled by the possible pure cussedness of his PG, because it will behave, allow easy pissing, not swell up, give false readings of Psa, and allow having a family at 75 while making females smile with temporary pussy destruction.
If better diagnosis methods had been around in 2004 when my Psa was 3, I bet a biopsy would have found a Gleason 5, and an RP would have successfully got rid of the tiny young Puff the Magic Prostate Grenade when it was a nasty little baby, and not yet able to breed without having sex, and thus pepper my body with little horrid puffettes, likely to explode later.
So my Psa of 0.4 might be equivalent to 4.0 in men with an equivalent amount of Pca but I can't be sure, and the scans do indicate a low amount of Pca. Considering these relationships is a bit irrational now because the ratio of Psa to amount of Pca present could vary. Either the docs all agree I'm a heck of a lot better than I was last year or not. Well they are all saying "You beauty mate, youse are doing OK".
I cycled over to see the radiation doc at hospital today and got there in very good time. I saw a Dr Kylie, the Registrar, and Dr Klieven didn't have time nor any need to see me, so no more appointments with the hospital radiation Dept are needed unless I am referred by my oncologist.
So so far, so good, and I cycled over via a main drag 4 laner then returned via the quiet lakeside, and it was a cold day, and yet I got along quite well, and had a vego sandwich at my café.
I spent time making an AM radio work better in arvo, so not a bad day.
Always look on the bright side, and do what you can if you can, and don't be too upset if you cannot.
My PSA was in ng/mL, which is exactly the same as ug/L if I'm not mistaken.
PSA is a funny thing. I had it tested several times before diagnosis, in my late 40s, and if I remember correctly it came back 2.0, 2.5, 2.0. Then 13 months after that last normal test it was 216 and the cancer was all over my body. What the flock?
My dad had a PSA of 12 and a normal biopsy. My oncologist, who is an avid cyclist like yourself, had his PSA reach 20 and his biopsy only showed "compression necrosis". Ouch. PSA is a funny thing.
Well, it's time for me to head into the office and watch in amused wonder as people stress about software bugs and schedules and other things that turn out to be figments of the human mind.
Anyway, you seem to have more reasons to be real happy than most men with Pca. It seems your Psa took off upwards in a hurry, then nosed dived and crashed. Wild ride there Bro.
I retired in 2012, at 65yo, and at my website, I publicly declared myself both useless and unavailable to provide any more of my electronics repair services for which the public tried to pay so little. I did have 65MB about electronics so they might repair themselves or get summwun@sumwear.com but they or Sum would have to read my site.
A few understood that idea, most didn't, but retire means retire.
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