Seeking input on Australia for Lu-177... - Advanced Prostate...

Advanced Prostate Cancer

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Seeking input on Australia for Lu-177 for my dad

sandiegosmiles profile image
38 Replies

My 76-yr old dad was active and seemingly very healthy when he was diagnosed with Stage IV prostate cancer 3 1/2 years ago. He has failed multiple rounds of chemo, hormone treatments (both abiraterone and enzalutamide). With his PSA at over 700 and overwhelming pain and weakness, he recently received his first dose of Lu-177. Fortunately, he seems to be responding well. PSA is now below 300 and his function is slowly improving. We are considering pursuing the rest of his treatment rounds in Australia. Wondering if any one has advise or experience to share. Also, what would it cost? We had a very bad experience at the Indian hospital. We would really like to find a better arrangement. Much appreciate any advice on options in Australia including the cost. We are intrigued by the fact that an overnight hospital stay can be avoided!

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sandiegosmiles
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38 Replies
wrando profile image
wrando

Just curious...why only one dose? I'm considering this treatment.

sandiegosmiles profile image
sandiegosmiles in reply towrando

The intent was (and still is) to pursue the recommended 4 or so rounds of treatment in 12 months. However, my dad has had a terrible experience at the hospital where he received treatment. The hospital is in India (where my dad lives). Hence the search for a more proven hospital, potentially in Australia.

wrando profile image
wrando in reply tosandiegosmiles

Have you considered Germany?

sandiegosmiles profile image
sandiegosmiles

We are open to Germany and would welcome any guidance on that front. I noticed a useful few posts regarding Germany. My dad had a traumatic experience during his recent Lu-177 treatment (the hospital is in India where my dad lives), and think he would do better if he could avoid overnights alone in the hospital (which appears to be a possibility in Australia but not in Germany).

Slate52 profile image
Slate52

Which Hospital did you use in India?

sandiegosmiles profile image
sandiegosmiles in reply toSlate52

HCG hospital in the Southern city of Bengaluru (Bangalore). It is one of a chain of oncology focused hospitals.

caretkr profile image
caretkr in reply tosandiegosmiles

Someone in my family had a bad experience with same hospital so we did not choose this one for my father who is undergoing treatment in India. Best wishes for your father. Kindly post which hospital you chose in Australia and how did it go.

sandiegosmiles profile image
sandiegosmiles in reply tocaretkr

All the best to your father. Hope your father responds well. please let me know if you would recommend the hospital where your father is being treated. I am not sure if my father will be able to undertake the long flight to Australia, so I would welcome any input on options in India. My dad is due to have his next dose in 3-4 weeks, so we are on a tight timeline.

caretkr profile image
caretkr in reply tosandiegosmiles

Thank u, my father had chemo in Vikram hospital, radiation in Apollo and Radical prostatectomy in Fortis. Currently he is on hormone treatment and zoledronic acid under medical onco in Vikram hospital(Millers road), we trust this oncologist(was referred by someone undergoing breast cancer treatment). She had only referred us to Fortis for radical prostatectomy as this particular surgeon is one of the best for this surgery.

sandiegosmiles profile image
sandiegosmiles in reply tocaretkr

Thanks so much! Very best to your dad!

One question: Would you kindly share the name of the oncologist who you trust?

caretkr profile image
caretkr in reply tosandiegosmiles

There is only one medical onco in Vikram hospital, Dr. Niti Raizada. Hope your dad responds well to treatments.Best wishes!

dress2544 profile image
dress2544

I would like to know the name of hospital you went for the treatment of lu177 psma therapy. What was the bad experience you had in that hospital. I am curious to know this only because I am also planning to have this treatment in an Indian hospital. If you reveal the name I can avoid that hospital. Hope you will disclose.

sandiegosmiles profile image
sandiegosmiles in reply todress2544

HCG hospital in the southern city of Bengaluru (Bangalore). It is part of a chain of oncology -focused hospitals.

dress2544 profile image
dress2544 in reply tosandiegosmiles

Thank you Sandiegosmiles for your prompt reply.

whatsinaname profile image
whatsinaname in reply tosandiegosmiles

What exactly was the "bad experience" that your father went through ??

Thank you very much.

hansjd profile image
hansjd

Have a look online at the Wesley Hospital in Brisbane (Dr Wong) and Theranostics in Perth. Both offer Lut-177 treatment. Cost about A$10000 per treatment.

whatsinaname profile image
whatsinaname in reply tohansjd

Its less than half the price at Jaslok Hospital, one of Bombay's better hospitals.

Plus all the other hassles of getting the treatment in a foreign country.

sandiegosmiles profile image
sandiegosmiles

Thanks very much jansjd!

ARIES29 profile image
ARIES29 in reply tosandiegosmiles

Dr Lenzo from Theranostics also in sydney & same day treatment recomended 3 treatments for me at the time.

They also can be contacted by skype.

I know a patient that had his psa drop from 900 to 600 after one treatment so something works

sandiegosmiles profile image
sandiegosmiles in reply toARIES29

Thank you so much. I will reach out to Dr.Lenzo.

docrok profile image
docrok in reply toARIES29

Hi Aries 29: I think I am here now where U were b-4 the lu-177 treatment. I have doubling time rising PSA of 1 month. No ADT nor chemo yet, like U. I am trying to get Theronistics of Au. to take me on. They are considering it. How hard was it 4 U to find a place that would treat U with the Lutetium-177 w/o having had ADT nor chemo? Seems no hard science yet on guys like us. How would U recommend I proceed with my quest. I do not qualify for USA clinical trials of 177 because I am not mCRPC nor had chemo yet. WE are a "biochemical recurrence" only. How did U qualify for treatment and where my man. Please respond. TX much brother.

ARIES29 profile image
ARIES29 in reply todocrok

Hello docrok, in my case the oncologist had to gain ppermission from my GP pointing out the cancer had progressed to lymph nodes & somewhere in left side of body. Theranostics took me on after that & now had two treatments with results of latest galium 68 pet scan on next fri so will post them.

docrok profile image
docrok in reply toARIES29

Hi Aries29: TX so much for writing to my inquiry Aries. My oncologist here in Minnesota has made a referral to Theronistics, so I think Dr. Nat is aware of my cancer situation. My PSMA-Pet scan, completed on 11/14/18 at UC-San Francisco, showed lymph nodes in three parts of my body lit up. No bone mets yet. I am hoping Dr. Nat will accept me even tho I am no mCRPC, which is the norm for most. U seem to be in the same boat as me with not being mCPRC. Yes do let me know how your new Gallium 68 comes out. Tx for writing me on the Malecare site for easy connection. docrok

ARIES29 profile image
ARIES29 in reply todocrok

Your welcome docrok. Dr Nat & the girls at reception are very helpful i found & yes i was still hormone receptive before treatment but could not stand the side effects so found this helpful site. Keep on fighting.

I don't know if it will help, but has he had his prostate removed? I'm having mine out in a few days. I know it could be spread to more places, but would removing the prostate as a whole help the situation? Perhaps try to find a hospital that uses the Da Vinci Robot. It will make his life easier if it needs to come out.

cesanon profile image
cesanon in reply toYouGottaBeKiddingMe

My understanding is that if there is metastatsises, it doesn't make sense to remove the prostate.

Tall Allen posted some research herr on this subject.

podsart profile image
podsart

The use of PSMA as a treatment modality always seemed like it had great promise. Can u guys tell what the experience was like, the results, and side effect?

Jeff_Katz profile image
Jeff_Katz in reply topodsart

After 1 treatment by Dr Lenzo of Theranostics in Sydney, my PSA continued to rise but at a slower rate. One significant side effect: extreme fatigue requiring several hours of daytime sleep. This lasted about a month following the infusion.

podsart profile image
podsart in reply toJeff_Katz

Thanks

Are there more infusions involved in the treatment?

cesanon profile image
cesanon

I have been told that Australia is much less costly than Germany. And the $10,000 price you mentioned seems much higher than what I recall being told.

jonnycrouch profile image
jonnycrouch

Hi ive done lu177 in Australia with DR NAT LENZO of Theranostics Australia its $9600 per treatment cycle. I've had two rounds all going well all round. Nat's a great Doctor and very creative with his treatment protocols- call him they provide great service. This price ticket is a lot cheaper than Germany and no overnight stay - in fact a left a few hours after id had my infusion. good luck John

sandiegosmiles profile image
sandiegosmiles in reply tojonnycrouch

Thank you so much for sharing the details of your treatment. Wishing you all the best!

ctarleton profile image
ctarleton

These might help:

theranostics.com.au/service...

theranostics.com.au/wp-cont...

theranostics.com.au/referre...

Charles

sandiegosmiles profile image
sandiegosmiles in reply toctarleton

Thank you so much! I will explore this option.

Foster007 profile image
Foster007

I know that I have seen somewhere and heard elsewhere that they are using Lu-177 with PSMA in Israel and there is no requirement to stay in hospital over there. I cannot promise it is true because I can't recall where I saw it and when I was told about it it was pretty much in passing but it was said by someone in the know so would check it out if it is easier to get there. I have found that medical services in Israel are comparable or a lessor cost to other countries I have checked along this mottled path over the past few years.

Best,

Foster

Patrick-Turner profile image
Patrick-Turner

Hi sandiegosmiles,

I have posted a lot on getting Lu177 here in Australia and if you search this group for my posts you will learn more about and other issues.

But the company here giving Lu177 is Theranostics Australia and is based in Perth in Western Australia. ( Google it ) Dr Lenzo is main doctor, and he flies between Perth and Sydney in New South Wales to give therapy in the two cities.

Costs are aud $9,600 ( usd $6,900 ) for each Lu177 infusion, and your man would need to be referred to Dr Lenzo, and arrangements might then be made if Dr Lenzo thinks the treatment will give a benefit. This doctor has done hundreds of LU177 treatments in the 3 years he has been operating here in Aus. Dr Lenzo is a nice man to deal with and you man would maybe have to have PsMa Ga68 scan before Lu177 treatment which is at 8 week intervals. Scans could be done in US, and consultations with patients are by Skype video before treatment and after, but on the day of treatment you get to talk to the doc. Nothing to fear there.

The treatment is just sitting in a chair getting infused through canula in an arm, like chemo, then 4 hours more with saline drip and you are then allowed to go home alone. I felt a little tired after the travelling but very few side effects initially. I had a dryish mouth for a week, then had slight aches in bones where my biggest mets are but they have subsided now, a month after the 2nd Lu177 inject.

I live in Canberra Australia, 300km south west of Sydney, and I was able to get my treatment at Macquarie University Hospital. I was lucky to be able to stay with my dear sister for 2 nights in Sydney, so I got a train from Canberra to Sydney on day before treatment which begins at 9:30 am, and ends at about 3:0pm, I stayed a night more with sister and got train home next day.

But Dr Lenzo told me of a 90 yo man who drove his car from Canberra to Sydney before treatment then drove straight home afterwards, a long day for an old man.

So if you are coming from overseas, you would have to make a lot more accommodation arrangements but your man should not have to stay in hospital over night unless he has some initial reactions that require it.

Some how I cannot help thinking that Australian hospitals are probably just as good as found in USA, maybe much cheaper, and of course likely to be better than those in India.

I wish you best of luck,

Patrick Turner.

Trecento profile image
Trecento

Hi, I understand this treatment is now being offered in Adelaide by Dr Jones and Partners. Will raise it with my husband’s oncologist when we see him this week. No idea how much it ciste, but imagine it would be comparable with what Patrick has reported.

drjones.com.au/lutetium-177...

POLYANNA1 profile image
POLYANNA1

Hi sandiegosmiles. My husband has advanced PC. There is a treatment LU177 which is a type of radiation attached to a tracer which hunts down the protein emitted from the prostate cancer cell (to my non scientific understanding) There are several trials in Aust presently and it is available privately $$$. We had a medicare funded video consultation with Nat Lenzo in Perth. It is available in Melbourne and other states. I hope this helps you and your father. xx

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