Jump to content
Patrick Turner

Chemo then Lu177 update

Recommended Posts

Patrick Turner

Hi all,

See my website page at http://www.turneraudio.com.au/Patrick-other-concerns.html

I have updated my story and Psa results with chemo followed by first two Lu177 infusions.

 

BTW, there seems to be a number of trials for Lu177 combined with other things, and I heard

ketruda was going to be trialed soon. Is this correct?

 

Share this post


Link to post
Share on other sites
Kezza2

Thanks for the update Patrick.  You and I seem to be at about the same place in our journey, just mine started a bit before yours, and I am still persisting with docetaxel, but only two more to go.  Depending on PSMA PET after I finish Docetaxel No 9, I am being referred to the Lutetium 177 trial if there is any increase in activity.  I look forward to hearing the results of your next scans.

Share this post


Link to post
Share on other sites
Patrick Turner

Hi Kezza2,

My onco said chemo probably would not work for me, and after 4 x Docets he was right, Psa zoomed from 12 to 45, so he referred me to Dr Lenzo for Lu177. I am buying Lu177. 

My GP also said chemo failed. 

There was a trial for Lu177 or Cabazitaxel, one or the other, and I did not want to waste time waiting for it and then find I was assigned to Cabazitaxel which most likely have done no better than Docetaxel.

A CT scan showed more Pca mets had become visible during time on chemo.

I needed the benefit of Mini Atomic Bombs wielded by Aunty Lutetia, a no nonsense gatecrasher of Pca parties going on in my bones.  

If Aunty Lu is outwitted, and Psa does not fall, I could go back to chemo which might me my last chance and I might miss out on being able to get other things as they emerge from the reaearch and trial process. 

Ra223 ( Unkel Radium ) is also purchasable, maybe OK, but bones might get very fragile. 

Patrick Turner. 

Share this post


Link to post
Share on other sites
Patrick Turner

To all readers,

Above I described Lu177 treatment so far.

For those who may have forgotten the link to results for the phase 2 trials at Peter Mac in 2016 :-

https://www.researchgate.net/publication/325026194_177_Lu-PSMA-617_radionuclide_treatment_in_patients_with_metastatic_castration-resistant_prostate_cancer_LuPSMA_trial_a_single-centre_single-arm_phase_2_study

 

Yesterday I did some serious work around the house including caulking leaks in my pool for 2 hours, so no cycle ride, but pain did not increase in hip or elswhere. But today pain after 1km on bike stopped me, and after 20 seconds, pain faded down, so after another 1km, I stop, and pain fades, then 0.5km more and I had sandwitch lunch at cafe and the 5km on way home was pain free. I will start taking 2 x 5mg prenisolone tablets daily and stay off bike a few days and see what happens.

While on Zytiga last year the prednisolone was to replace steroids not made by adrenal gands while on Zytiga.

I do not know if the cessation of steroid production or of testosterone caused by Zytiga is permanent. I did ask my Lu177 doc what my T levels were before No 2 Lu177 and he said extremely low, but no figure was given.

I may have mentioned Lu177 gives alpha radiation, but it is beta, which is absorbed by all tissues within 2mm distance from where Lu177 molecules are. 

Patrick Turner.

 

Share this post


Link to post
Share on other sites
Nev Black

 

I think Actinium-225  is alpha emitting,

Lutetium-177 is beta emitting.

No idea when or if Actinium 225 will be on trial in Australia.

I guess you have bone density check every couple of years?

Very best wishes Patrick.

 

Share this post


Link to post
Share on other sites
Patrick Turner

Hi Nev,

Yes, I think you could be right about alpha and beta but at other sites I saw too many alphas where betas should be. But its not highly important because ordinary ppl like my humble self really need only know if something is likely to work. 

Docs are not concerned about BD now; I had 3 injects of denosumab within 4 months before I had chemo, far more than needed, so I copped a bit of jaw necrosis side effect that becomes most likely after years of ADT. I refused a 4th bi-monthly deno inject. Anyway, deno-jaw seems to have "resolved", ie, hole in skin over dead bit of bone has gone and no more lower right jaw ache. I also had zelodronic acid in 2012. None of these things stopped Pca progression to bones, maybe because many microscopic bone mets were seeded to bones well before 2012. They did not show in Ga68 PsMa scans until 2017. 

 

Next and 5th Ga68 scan is after 4 Feb, and may show what good progress if any has been achieved. 

I am not sure if Theranostics Aust does Ac225; feel free to Google what they say is available. I don't know about Ac225 trials. There are upcoming Lu177 + "other stuff" in Vic, Peter Mac, maybe other stuff is keytruda, olaparib pembrozilumab but Google should tell what trials are coming. With keytruda, the idea is that Lu177 weakens the ability of Pca to hide from immune and the ketruda then sees the Pca for what it is, a bunch of ROGUE cells, and then it can work like it does on some other cancers.

 

My doc for Lu177 said Ac225 is maybe more effective than Lu177 but gives definite side effect of dry mouth, wheras Lu177 is gentler, and takes longer to work. After No 2 Lu177 last Friday, I had a bit of dry mouth but its now faded down. I expect fade downs to be slower as I have more Lu177 injects.

Doc said he does not expect my next scans to show any soft tissue mets; ie, Lu177 is mostly very adequately effective where there is enough soft tissue PsMa avidity.

It is the darn bone mets that are the bother. The Pca locks itself inside the castles of our body, ie, the bones, and then has destructive wild parties there. It takes time for Aunty Lutetia with a bag full of mini atom bombs to gatecrash the parties repeatedly and let a few bombs off to upset the Pca.

Of course PsMa avidity may not exist for Pca mutant cells that have survived all previous treatments including Lu177, and I don't know everything and maybe they are the untreatable cells which grow to kill me - but not tomorrow.

Healthy bones are normally stronger than we need, and mine sure were over normal BD because I worked in building trades for 30 years, fighting gravity to put up buildings. After a few early falls off my bike when I raced in 1980s and 90s as a veteran, I never broke a collar bone which was so common for the elites who had low fat and thin bones with high muscle %. They don't bounce very well. But my BD surplus is gone, and if I had  bad crash off me bike, I could break bones easily. But I am good at cycling defensively, and often give way when I have the right of way, and after 240,000km on bicycles I have never broken a bone, and maybe this indicates good brain density 🙂

I hope you are doing OK, 

Patrick Turner. 

Share this post


Link to post
Share on other sites
DavidAbrahams

Interesting posts re the Lu-177.

Patrick, Over the past 10yrs of my journey I have received maximum dosage of radio therapy for pain management. Principally to my pelvis, L3 & L4, Sacrum and right shoulder. Are you aware of how this would/ may impact re eligibility to participate on a Lu-177 trial? Kezza2 can you advise who and where is the Brisbane trial being conducted?

Thanking you in advance and good luck in your journey.

Yours Aye

David

  • Like 1

Share this post


Link to post
Share on other sites
Patrick Turner

Hi David,

I am not a medical radiation specialist and I have not much idea what the ppl conducting trials might think about your RT to pain spots in your skeleton, with regard to eligibility for Lu177. But if there was maximum RT to a particular place, say L3, then Lu177 will raise this total level and may exceed what is deemed safe. However, the max RT using X-rays is usually determined by what is a safe amount in healthy tissues nearby without affecting blood vessels. If the RT X-rays have a path way through bowel or intestines, the radiation exposure in Greys is usually much less than the target area where a number of X-rays intersect, thus making target area get much more RT than the path ways. The RT that does go through healthy tissue should not be enough to stop bleeding if ever some surgery or some minor cut occurs in the tissue. For example, with standard EBRT gives 70Gy to a Pg and maybe hips and rectum etc cop about 8Gy, and the tissue remains alive. But max dose to PG used in brachy therapy maybe + EBRT could be 160Gy, because that is how much radiation may be needed to be more likely to kill the Pca in a PG if its a stubborn and tough type of Pca, especially if the Gleason score was above 8 at diagnosis. I could say that 160Gy to a PG will make a mess of it, and damage nerves around the PG and a lot within it, including the prostatic urethra which is part of pipe between bladder and Rodger, and this small length of pipe can shrivel up to obstruct urine flow. There have been cases where men have suffered badly with permanent bleeding from sites where a huge amount of radiation has been delivered. There is variation between men for their tolerance of radiation. So when one therapy is piled on top of a previous therapy, the book of theory becomes less valid and risks increase. 

So I have had maybe 8Gy to each hip joint, and damage is likely to be low, so the joint is expected to last my expected lifetime, which I might think is to be less than had I not got Pca. In other words, I could afford to throw away some of the hip joint lifetime to get enough RT to PG.

So, if your L3 had had a high level of RT delivered, but is still below max allowed, then there is headroom to allow more RT from Lu177, and this radiation will only affect the tumour, because beta radiation is all absorbed within a 2mm distance from Lu177 molecules, but remember, I am guestimating.  

You will need a doctor's referral to get into a trial, and often that is an oncologist or radiologist who will know who to contact. Usually such specialists are kept up to date about what is available now, or soon. 

 

It is a dry 40C here now, and I sure need the fans. 3 more days of heat wave to go. 

I am wearing out the water in the pool, and I am at day 11 after 2nd Lu177, and it seems swimming 1/2 a km each day instead of madly cycling about, is a much better way to exercise while I have doubt about one hip. But the slight pains I had in 3 other areas have almost vanished, and I cannot help feeling that Aunty Lutetia is doing me good, while murdering Pca guests in my bones. I just can't be sure about it.

 

There is a point in our fight with Pca where you have to take risks. I've taken several but I remain alive and not in serious pain so I can continue life of independent living and dealing with boring everyday challenges such as re-building a worn out brush fence here, mowing lawns, clipping hedge, doing housework et all.

The 40M long fencing became a much easier challenge when I found an excellent bloke to help me do it. I am going to use colour bond and not replace the Adelaide brush because the price since 1983 has sky rocketed because the Brush Mafia stops me just buying bundles of brush to install to old poles and wires. Not only that, the brush is a big fire risk so Steel It Is, and besides, I need to comply with what I think will be the new ACT's rules about fencing around pools. I might be slowly perishing, but I ain't quite ready to quit the fight.

Patrick Turner.  

 

 

Share this post


Link to post
Share on other sites
Kezza2

Hi David, long time no hear.  The Lutetium trial is being conducted at Royal Brisbane Hospital.  This is the TheraP trial comparing the efficacy of Lutetium 177 to Cabazitaxel for men with metastatic castrate resistant prostate cancer.  Contact person for the trial is Jenny Campbell, email Jenny.Campbell@health.qld.gov.au.  Details of the trial are at https://clinicaltrials.gov/ct2/show/NCT03392428

Share this post


Link to post
Share on other sites
DavidAbrahams

Patrick, Kezza2,

Many thanks for the info. Will keep you posted should I go down that track! Bone pain is presently under control with fentanyl patches (100mcg/hr) changed every 3 -4 days and occasional oxy-norm 20mg for breakthrough pain. Fortunately or unfortunately depending how one looks at it I do not need to worry about my urethra as I had a SPC fitted last year!! (secondary prostate cancer which only effects 2% of men who are mCRPC & still have their prostate.)

Cheers

David

Share this post


Link to post
Share on other sites
Patrick Turner

Hi David, 

I sometimes have trouble remembering everyone else's Pca history when they post, and yeah, the suprapubic catheter, SPC, does solve the problem with a constricted urethra or of the 2 ureters draining from kidneys to bladder.

I have no idea how many Pca patients have such much Pca inside and outside their prostate gland which makes them inoperable, but yeah, maybe 2%, but could be more, we are never told, and I don't know how many men have Pca in a retained PG which becomes a major pest later. But plenty of men have RP but Pca is not halted, but they also could get a problem with urethra constriction at the site of join in urethra within surgery site.  

 

But I was inoperable, and attempted open RP was abandoned after cutting me open. Biopsies were taken for various bits nearby but no spread was found, but then it could well have spread but mets were too small to see, even under a microscope. The first 2 mets appeared on PsMa scan in 2016, in two lymph nodes each side of oesophagus, and 7 years after I was diagnosed. Many more have appeared since, maybe there are now thousands, and I have no idea how effective Lu177 is to treat the very small mets, and if they are not affected by Lu177, they will keep growing so I'd need to have repeating Lu177 treatment if these mets are PsMa avid. My doc says a man in Germany has had 10 Lu177 infusions.

 

I was first in Oz to have 31Grey salvation IMRT to PG at Epworth in 2016 where the initial treatment was not RP, but just ADT + EBRT. 2 lymph mets were treated with "pencil beams" and 45Gy. I was told my Pca could NOT survive in these locations. 

But later PsMa scans told me the doctors were bullshitting - again.

And to get the Calypso IMRT in 2016, I had to have 3 radio beacons each 3.5mm dia and 10mm long implanted to my PG, that had previously had 70Gy in 2010. The positions of each beacon was guided by ultrasound and done with an "applicator" which probably was a dirty great big needle, poked in through perineum, the skin area under crotch, while I was under general anaesthetic. This caused a **totally unexpected** side effect of causing me to bleed profusely in a manner which caused a blood clot to block my urethra and I had blood going back to bladder, and out into my cavity around organs. In fact the docs had no clue just how much I bled, or where the blood went, but a lot of that blood was loaded with active Pca cells from the cuts in PG. Later I had several emails to the chief doctor who evaded answering my questions properly. I gave him my "uninformed consent" to proceed with IMRT in the weeks that followed, but I sure was not happy. Nobody knows if that procedure causes immediate spread of Pca to many places. I could never prove in a court that the doctors' negligence cause my Pca to spread. But most other doctors WILL NOT ever operate on radiated tissues because of risk of bleeding. I was kept in hospital for 2 days, ( $1,700 ) until bleeding eased, and a catheter could be removed, but very slight bleeding from Rodger occurred for 10 days leading up to the IMRT.

Later PsMa scans showed plenty Pca in PG. Was it worth it to spend 5 weeks in Melbourne ? - at net cost $15,000, after Medicare paid up. I cannot answer that question. Before that salvation treatment, I had casodex added to continuing Lucrin ADT. I got the average time of Pca suppression of Pca due to casodex, about 8 months, and I believe it masked any benefit I might have had from the extra 31Gy to PG. So nobody really knows if that type of salvation RT really works, or if its just a doubtful package sold at high cost for a profit to shareholders in the private hospital. I could find ZERO clinical trials of my treatment method online, just one article in AMCJ by a Dr Shultz in USA who first began this before 2011. He claimed 47 remissions. But what that really 47 out of a total of say 300 patients? Nobody knows.

 

My doc for Lu177 says all my soft tissue mets will be reduced to low level, ie, not able to be seen in scans. It does not mean that have all gone, it means it might take 5 years before they pose a threat again.

Bone mets are notoriously more difficult to reduce which is why the mean life extension due to Lu177 is deemed to be only just over 12 months. 

An extra year is worth at least $40,000, plus travel expenses, no?

Patrick Turner. 

 

 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×