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I am applying for Theranostics in Australia

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docrok

I am applying for Theranostics in Australia for the Lutetium-177 therapy.

I live in Minneapolis, Mn., USA.

 

 Dr. Nat Lenzo is reviewing my application now. If I am chosen to receive the Lu-177 I will be coming to Sydney, Australia sometime in February I guess.

I would like to hook up with my fellow brothers who are advanced prostate cancer folks like me.

I could use some support, conversation, connection and company while in Sydney. I am coming alone being a single man, 74, at this time.

I would like to have your contact info., email, phone # to be able to speak with you now, or when I arrive, if accepted.

Please get back to me with any info. you think would be helpful.

I would have to arrange housing, transportation, and locations of Theronistcs in Sydney, and daily places to shop and relax and live. I hope to hear back from you Best regards

Steve

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Chalkie

Hi Doc

I am on the Lutetium 77   Trial and living in Aus.   but in Melbourne 500 miles from Sydney. 

The trial is world wide and it is a phase two trial comparing a chemo Cabazataxel with Lute 77

 

I had my second infusion 3 weeks ago and while they say it is too early to tell how it is going - PSA was down from 325 to 300 after the first 6 weeks and I will get the results of another psa test last week on Monday

 

My treatment is happening at Peter MacCallum Comprehensive cancer center and I would be happy to have a chat with you over the phone when you make it to Australia.  Not that I am all that familiar with Sydney but I am sure there is plenty of options for you there.  I will try and send you a link to a youtube about theronostics that was made at PMCC a couple of months ago 

https://www.youtube.com/watch?v=oHATh4ZJ6dU     Don't be put off by the live event start move it on about 12 mins and you should have sound and vision

 

Roger  (mob 0407409961)

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Patrick Turner
48 minutes ago, docrok said:

I am applying for Theranostics in Australia for the Lutetium-177 therapy.

Hi Steve,

I live in Canberra which is 300km southwest of Sydney, and am maybe due for a No3 Lu177 infusion in maybe 3 weeks depending on outcome of PsMa Ga68 PET/CT scans next Tuesday.

So far so good, and Psa went down slightly between No 1 and No 2 infusion, and I am yet to have a chat with Dr Lenzo on 7th Feb, next week, by Skype.

For Lu177 therapy to work, the Pca must be able to be seen clearly in PsMa scans, ie, your Pca is PsMa avid.

Dr Lenzo should explain that fully. 

I was some bone pains after Docetaxel failed but after No1 Lu these eased off before No 2 Lu, and in 3 weeks before No 2, I cycled 960km, so I was actually very well, with Psa at 20.

After No 2 Lu about 5 weeks ago I had some bone pain in 5 places which I know have Pca lesions.

I also quit the prednisolone and quit cycling for awhile while pains persisted, but they were not sever pains, and I figured pains were due to Lutetium getting into bone mets and causing mayhem, so there was some inflammation pain. I re-started prednisolone, 10mg a day, a quite low dose compared to what ppl take for severe arthritis. Pains have eased, and I helped my contractor replace a fence and was very busy these last 2 weeks and yesterday had hard day altering paving around my pool and fitting new pump and a switch, and I felt 90 at 6pm but am only 71. I woke this am feeling renewed, like 25, and cycled 50km, and nobody overtook me around a crowded cycle route. All bone pains seem gone, except for right hip which sometimes aches thus it has me thinking its still inflamed because there's Pca in head of femur, and somewhere in pelvis, but maybe the joint is just failing; I had both knees replaced 2 years ago, and my Irish luck would be to get failing hips, not uncommon.

But perhaps its just a strained ligament in groin area because I coped OK yesterday carrying paver bricks around, excavating with pick and shovel, leveling ground, laying pavers, ready for grouting tomorrow. Almost no hip pain at all, but I'll ask the radiologist to have a very good look at my hip when he does PsMa scan on Tuesday; I don't want to make it prematurely worse, and docs may not want to replace it later if its full of cancer, although, if I had a new hip put in it would likely be a way to surgically remove the Pca in femur. I do not know what time I will be in Sydney yet.

 

You say you want to live in Sydney while getting your treatment. That would involve 24weeks between No1 and No4 infusions, and maybe you'd want to look at Airbnb for Sydney, because cost may be aud $5,000, and near Macquarie University Hospital, see https://muh.org.au/

Getting around in Sydney is best by cab to hospital if nearby, and then to Sydney city and elsewhere by train and bus because I doubt you'd like Sydney traffic. Plus we drive on the left here. You will have plenty of time to fill in between treatments and medical scans etc, so if you have no complications you may be able to take bus trips into countryside although at this time of year its hot here. 

 

From the time I was referred to Dr Lenzo by my oncologist to getting No1 Lu shot was 1 month, and I had already had a PsMa scan which confirmed it was probably wise to switch from chemo to radionuclide treatment, but as I say, nobody knows yet if its working well yet.

To feel less lonesome, you are welcome to post here, and perhaps there are other group members in Sydney. 

Patrick Turner.

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Patrick Turner
16 minutes ago, Chalkie said:

PSA was down from 325 to 300 after the first 6 weeks

I had Psa drop from 25 to 20 after 6 weeks. At least it did not rise.

I asked Dr Lenzo if I was coming to Lu177 too early. He said no, and that the trend in Germany where the Lu177 treatment was first done was that blokes are coming earlier rather than later, and I guess that's because more blokes trust it might work, and more blokes don't like dithering around trying chemo that hardly works and letting their total cancer load going high, so that even if they do get an ideal response from Lu177, they are still left with cancer lesions that may have no active cancer, but they may never heal up and may become a problem in future, so I guess bones could remain weak and brittle, which means not exercising, so a lousy QOL. Such concerns would be in research doctor's minds.

Dr Lenzo has done hundreds of blokes with Lu177 since beginning in Oz 3 years ago, so he'd know by now maybe more than many others. On my No2 Lu shot there were 4 other fellows getting Lu177 at Macquarie Uni Hospital in Sydney. I mentioned Ac225 to doc, and he said it works better than Lu177 but there are more severe side effects of dry mouth and eyes.

After No 2 Lu177, I had 10 days of slight dry mouth but went to normal again after that, so almost no side effects.

Lu177 takes longer to work on bone mets than Ac225, and then there is Ra223, Zofigo, good for bone mets but not reliant on PsMa avidity because Ra goes to where there is high Ca traffic activity in bone mets because Ra tends to replace Ca, and when it gets there it radiates the cancer which could be any type of secondary or primary cancer, not just Pca mets.

I'm, due for PsMa scan next Tuesday, and I talk to Dr Lenzo on 7 Feb, to see how I am going, and if its worth continuing, or changing to something else, or going to "watchful waiting" if Psa has gone low enough.

I presently feel very well, spent all day working guts out doing brick paving work and today I cycled 50km, good speed, and really, "I ain't that crook."

Patrick Turner

 

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tonymax

Doc,

 

I am 73, fighting advanced disease for 15 years now and currently great response with Enzalutamide.

I live in Sydney and see my specialists at Macquarie Uni Hospital there.

Have no direct experience with Lutetium but understand there is a Sydney trial with Dr Louise Emmett at St Vincents Hospital.

Checked Dr Nat Lenzo - apparently based in Perth but also has a treatment centre at Macquarie Uni Hospital.

 

Feb is getting busy but happy to assist in any way I can.

My home phone is 02 9651 6682 and email tonymax@optusnet.com.au

 

Regards         Tony Maxwell

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Patrick Turner

Hi all,

Dr Lenzo was originally based in Perth, but has tried to expand his medical business Theranostics Australia and he thus organised a part of MMI at Macquarie Uni Hospital. He was often flying between Perth and Sydney to be present while therapy was done for his Perth and Sydney patients, and I guess there is more business in Sydney than Perth with the larger population. The administration of his business is now by Genesis Care, and he employs another Doctor McFarlane who I saw in Sydney for my No2 Lu177. This doc said he was giving Dr Lenzo a break over the holiday period. So the TA business seems to be thriving and expanding because quite a number of men gain more time on the planet compared to the other options. There is no shortage of ppl willing to pay $40,000 from their own pocket to extend their lives by a mean extra time of 14 months. Some get much more time, some get less, and just who gets what could be examined by reading some of the trial reports carried out on 31 patients in 2016 at Peter Mac by Dr Hoffman. But Dr Lenzo has done hundreds of patients and claims a 70% success rate, and I suggest to find what that means ppl need to Google Theranostics Australia. To qualify for treatment a patient needs to have PsMa Ga68 PET+CT scan and Psa maybe above 5, so that PsMa avidity enables the scan to show where Pca is active. Some Pca does not produce PsMa and usually a low Psa, and these patients are often in deep trouble especially if RP, ADT, EBRT and chemo fails to hold it back.

I do know someone who has high enough Psa and PsMa avidity to benefit from Lu177, but he also has Pca mets in his liver which are not PsMa avid and the speed of his cancer growth is terrifying, and as you all might know, treatments for cancer take time to work, and sometimes the cancer rushes ahead of what medical any medical treatment system can provide. 

Patrick Turner.

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Bruce

Steve, I had Lu 177 treatment with Nat Lenzo at Macquarie Hospital early last year. I my case I had only one infusion and as at my last blood test in December 2018 my PSA reading is undetectable. I live 100 miles southwest of Sydney , so driving to the hospital was not a problem. I had two briefings with Nat Lenzo in November and December 2017 at Macquarie Hospital. Prior to the first meeting I had a  and e meeting and promptly had the infusion that day ( I pay full price). 

Edited by Bruce
hit transmit by accident before I had finished

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Bruce

Steve, I had Lu 177 treatment with Nat Lenzo at Macquarie Hospital last year. I live 100 miles southwest of Sydney , so driving to the hospital was not a problem. I had two briefings with Nat Lenzo in November and December 2017 at Macquarie Hospital. Prior to the first meeting I had a PET/CT PSMA Scan showing the cancer was in my lymph system despite a course of standard radiotherapy earlier that year. At the second meeting Nat said he wanted me to have an injection of Diphereline as he hoped this would in effect 'stimulate' the cancer to grow more receptors. This had the desired effect and in February 2018 I had my LU177. In my case I had only one infusion. I've had three blood tests since and as at my last test in December 2018 my PSA is undetectable. I'm now on a three monthly watch. I was able to move quickly but have had to meet the full costs of the treatment.

 

I guess your accommodation will depend on whether you need additional courses after the first shot. Macquarie University Hospital may be able to help with places to stay during treatment. My suggestion would be somewhere in North Ryde as that would be a short cab ride to the hospital. I'm not sure about public transport as the train link between North Ryde and the hospital is currently being upgraded and there may not be a service operating. There is a large shopping centre in North Ryde and another close to the hospital.

 

Let me know whether you are going ahead and I'll be happy to keep in contact with you when you are over here. My email is bargon@bigpond.com

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Patrick Turner

Bruce told us...…

 

"Nat said he wanted me to have an injection of Diphereline as he hoped this would in effect 'stimulate' the cancer to grow more receptors. This had the desired effect and in February 2018 I had my LU177. In my case I had only one infusion. I've had three blood tests since and as at my last test in December 2018 my PSA is undetectable.

 

This seems to be a very remarkable result. What was your Psa before Lu177, and what was the extent of Pca? And what was the meaning of "grow more receptors?" what were the receptors receiving? Did it mean that the Pca would attract more Lu177 than if Diphereline was not used? 

I had ordinary ADT injections which gave Pca suppression from 2010 to 2016, then had Cosadex then Zytiga then Docetaxel added to the ADT, and the addons all failed one after the other. I had Pca in lymph nodes and many spots in bones but no  Pca in organs, which means organ mets may be too small to see in PsMa scans.

Anyway, 6 weeks after first Lu177, Psa remained at 25, but went down slightly to 20 before No 2 Lu177, and I might need the whole 4 Lu177, and it is possible that because my cancer is at least 10 years old now, it is possible I have several or many Pca varieties because of mutations and that even if I had a Pca of ZERO at my last blood test last week, it would not mean I have got a cure. It would just mean that any Pca which did produce Psa is now at levels below detectability, but there could be a dangerous amount of Pca present which does not make Psa, and may not be PsMa avid.

I know a man, under 60, who is now having to fight Pca lesions in his liver which are not PsMa avid, and docs are trying to fight that before giving him Lu177. His Psa > 400. The speed of the Pca he has and the way it changes is terrifying, and he littler benefit from RP, then IMRT, then ADT, and Cosadex made Psa rise from 7 to 40, ie, it fed the damn cancer.

 

I wish you the best of luck, but many of us who are now forced to get Lu177 will not have such a seemingly amazing result where Psa nosedives to undetectable after No1 Lu177 infusion.

I speak to Nat Lenzo later this week and I ask about Diphereline. For my No 2 Lu177, Nat was on leave with a Dr McFarlane holding the fort, and he sure didn't mention the Diphereline. I'll do a Google search now.

Patrick Turner. 

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Patrick Turner

Hi All,

I read with some interest that Bruce had been given Diphereline before his first Lu177 shot and Psa later became undetectable, implying that Lu177 had done an excellent job.

I googled Diphereline, and came up with a reference you are free to read at

http://www.prostate.org.au/media/333739/Drug-Sheet-07-Diphereline.pdf

It appears to me this is an ADT drug, and its action is to shut down testosterone production in testicles, and probably does similar things as Lupron, Eligard, Zoladex, Lucrin.

So just how much did Lu177 reduce Pca and Psa?

Diphereline does not appear to "grow more receptors" to make Lu177 more effective. If it does, then could someone provide us all with scholarly paper giving the full story on Diphereline enhancing LU177?

 

When starved of testosterone made by testicles, and with only a small supply maybe 1/40 of normal from adrenal glands, the Pca reacts by growing more receptors for testosterone to capture more testo from a smaller amount of testo passing by in the blood stream. Proponents of BAT say the ADT drugs can increase testo receptors 100 times. So the PG cells ( or mets if any ) get more testo and Pca grows.

And when adrenal glands are shut down by Zytiga, the Pca cells adapt by making their own testosterone, and Pca grows, Psa rises, and we are back to square one again. 

This is probably oversimplifying what medicos might tell me but I became ineligible for BAT when bone mets were found because pain can be horrendous with BAT. But the phrase "growing more receptors" is relevant to hormone level altering drugs, and having intermittent high injections of testo while on ADT. 

A trial was done on efficacy of BAT in USA, but I have never seen the results. 

 

I am always interested in what I read but hardly ever believe all things I read, or am told. In 2016 I sought to have "salvation" IMRT to my PG which was never removed, and only treated with ADT and 70Gy EBRT in 2010.  In 2016 My Psa had quickly risen from 1 to 5.6 in a few months and my first PsMa scan showed 2 positive upper lymphs and a very positive PG.

The chief oncologist at a good private hospital said the extra 31Gy to PG would "definitely kill the cancer in PG"   and I proceeded with the IMRT, giving this doctor my uninformed consent because he had no proof of whether this salvation IMRT would work or not. In fact, I was the first in Oz to be treated this way where initial treatment was not with RP, but primarily with ADT+EBRT. This doc put me on Cosadex which made Psa drop from 6 to 0.4 in 6 months, and I thought it completely masked the effect if any achieved with his fancy-smancy Calypso IMRT. But Psa rose again to 5.5 within 9 months. How much did the extra IMRT do for me? Very little it seems because all following PsMa scans up to October 2018 before my Lu177 showed Pca present in PG.

 

So Pca just was not killed like the doctor said it would be.

 

But maybe it held back Pca slightly, and nobody really knows by how much. I took a chance that the net cost of $15,000 might do something. This was well before any other doc suggested Lu177, which was then only recently available in Perth only, with many ppl doubting it really could do something worth paying for. Peter Mac did phase 2 trials beginning inn 2016 and now we all know more and that Lu177 is probably worth buying.  

 

I had also found out in about 2013 after my primary treatment and when re-started ADT that my chance of getting a fix with standard EBRT plus 2 years ADT with a Gleason 9  tumour at PG was next to zero. St Vincents in Sydney had a webpage suggesting my treatment was likely to have 90% failure rate. That web page vanished after 2013.

 

Perhaps the Rolls Royce radiation before Lu177 was brachytherapy which could be done with maybe 100 gold + nuclide tiny pellets injected into PG and with possible extra EBRT to give a maximum radiation dose of 160Gy. But no man would want more because all nerves at PG get fried, total ED and full incontinence occurs and the prostatic urethra gets fried and just what exists in a man after 160Gy to a PG is not well known. Pca can still survive this much radiation. And what about the pellets and the applicator needle penetrating the urethra? Anyway, the many holes in PG would heal up fast before the radiation had a chance to damage the ability of PG tissues to heal.

However, with multiple applicator needle injections to PG, would not the PG bleed during the procedure? Would not some Pca cells enter the bloodstream? what of Pca cells spread by bleeding into abdominal cavity?

I've not read anything of how shit can happen with such medical procedures. 

 

If the prostatic tissues that were radiated constrict as time goes on, the urethra might constrict, or be fragile, and rupture, and the man could need a suprapubic catheter, ie, a plastic outlet tube from bladder below belly button so a pee bag can be filled. Such things are nuisance, and prone to infections, but otherwise tolerable, and you don't need to wake up 4 times a night. There is an online group for about 45,000 Australians who wear bags for liquids or solids or both. 

But with BT, the rectum and bowels and hip joints etc are not damaged like EBRT causes, and this is similar outcome for Lu177.  Standard EBRT is high power X-rays entering the pelvic area in 4 directions, in a 90 degree cross pattern, horizontal rays go through both hip joints and get a substantial % of the total that is sustained at PG where the 4 directions intersect to give 70Gy.

The rectum also gets hit by vertical rays, which may cause radiation colitis following EBRT. I had bleeding from bowels for a year or more after EBRT. The salvation IMRT avoided my hips, and 8 different directions were used, but all in the same plane, but a month after that IMRT I had 2 months of severe radiation colitis despite the installation of hydrogel between PG and rectum to prevent bowels being affected. They are still affected, and when I now feel the need to poo, I must go immediately, and my rectum takes more time to empty. That hospital told me the 10cc of protective gel cost $2,000 just to buy it. But I don't bleed. 

  

I now guess I know why Dr Lenzo did not suggest Diphereline to me because he knew all my long boring history of many treatments which one by one failed over time. He offered me a 70% chance for life extension.

The definition of what this means is vague because of the differences in patients who come to him to buy time. He is a time seller, and he seems to be a good doctor. I just cannot see that a man with 3 months to live and with no other treatment options and a Psa > 500 could get much more time than someone like me with Psa 25, and maybe 3 years to death if nothing is done. Such considerations are impossible to accurately quantify, and our minds think that 2 + 6 = 8, but with cancer you add 2 to 6 and you might get any number between 0.1 and 100, over a year. 

So Lu177 is a gamble. I can afford the cost of the wager, and not blow all my dough if the horse does not win.

 

I have a friend who at 66 had RP with Gleason 6 and Psa 6.5, and his Psa went to < 0.01 very fast but 6 years later it was 1.0, and so he had a full course of EBRT and Psa is now again  < 0.01. It seems like he did not have any mets. He is now 79, and he has never needed ADT. I think he was quite lucky. His continence was / is a bit leaky, but manageable, but he had complete ED after his RP, and the fun with GF immediately ceased. She was ( and still is ) a nice lady, ex nurse, but had terrible whiplash problems after a car accident years before she began with my friend.

Old age teaches me that adaption and tolerance must be key ingredients of my later years. I prefer them to be full of goodwill, humour and wonderment, when I am not being deadly serious right now.  

Patrick Turner. 

 

 

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Bruce

My reply to Steve was no more than a friendly welcome and a brief description of my personal experience with Nat Lenzo. That's it, just my personal experience.          

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Charles Thurgood

Greetings Steve.

If you come to Sydney for treatment suggest you purchase an Opal card (www.opal.com.au) as this will save you a lot on train, bus and ferry (great way to see Sydney Harbour) travel costs.

Unfortunately the saving isn't applicable on train travel to and from Sydney airport as that part of the line is separately owned but is good everywhere else. 

 

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Patrick Turner
6 hours ago, Charles Thurgood said:

suggest you purchase an Opal card (www.opal.com.au)

The Opal card is essential for getting around Sydney by train, and it now seems the Opal card gets you to Sydney airport but there is a station access fee that is deducted and the details are explained in a ridiculously long winded pile of BS at https://www.opal.com.au/en/opal-fares/airport_station_access_fee/

However, anyone getting Lu177 must be able pay the large cost of the treatment and the train and taxi fares would be the least of their expenses. 

Opal is good for metropolitan area of Sydney, but if you travel by the old fashioned slow trains around NSW then costs are higher, and international visitors may not get a pensioners discount rate. I suggest it is best to only buy first class rail tickets which are marginally above the economy tickets.

In first class, engine and suspension noise is less and the other passengers do not misbehave as much, and its closer to the meals servery.

 

BTW, I got results of blood tests and PsMa scan results following No 2 Lu177 cycle. I spoke to Dr Macfarlane who is part of Dr Lenzo's team and he said Psa was 17, slightly down from previous 20, but no soft tissue mets could be seen now in thorax. But Bone mets are only slightly declining so I may need the 4 standard infusions, so two more over next 16 weeks and then appraisal at say 5 weeks after that. The fight is definitely not over.

A total of 5 areas of bone joints were slightly sore for a week after No 2 Lu177.

4 areas have now virtually no pain, but my right hip gives some pain, and I have paused from cycling to do house renovations before my hip goes really bad, because although Lu177 might kill cancer in bones, it leaves bones in a mess and critical joints such as hips are very prone to damage from Pca and the long term prednisolone does not help joint health.

Its possible I might need a new hip joint but I'd need a "courageous surgeon" because usually surgeons just will not go near radiated tissues. 

So at some time I could need a wheel chair and a whole new lifestyle, so I spare rooms ready to allow a live in carer if necessary. I am thinking that there will be life after Lu177, but must allow for my further problems of living.

I'll be getting an MRI soon to see the full story about my hip. 

Patrick Turner.

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Charles Thurgood

Hi Patrick,

I'm not aware of Steve's financial or medical situation, I was merely suggesting a travel option for an overseas visitor to Sydney. 

 

Charlie Thurgood.

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