17 years with metastatic prostate can... - Advanced Prostate...

Advanced Prostate Cancer
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17 years with metastatic prostate cancer – hope disappearing down the Lu

HighCadence
HighCadence
110 Replies

No long story this time round. I’m going to cut straight to the chase. The Lu-177 treatment has stopped working. My PSA has been on a steady increase for the last three months (see the chart). My last PSMA scan showed the large mets in my spine have stabilised, but not improved. Smaller mets in my spine, clavicle and scapula have improved slightly, as has activity in a lymph node.

I had a chat with my Doctor yesterday, after the 5th infusion, and he told me a sixth cycle was unlikely to resolve/significantly reduce the mets in my spine. When I asked him if I should pay for a sixth cycle or spend the money on a family holiday, he said “That’s a very difficult question to answer”.

So, it looks like I’m going to have to try to get myself on an immunotherapy trial. I’m germ line BRAC2 and my tumours exhibit micro-statellite- instability, so there is at least some chance immunotherapy will work. I’ve decided against Cabazitaxel, as I don’t want to feel sick for months for no real gain.

So, my fellow warriors, if you have any advice for future treatment, please let me know. I’m open to pretty much anything. Any advice will be gratefully received.

Aside from that, I'd like to wish you all happy holidays and good/better health for 2020.

David.

110 Replies
oldestnewest
tom67inMA

I'm curious, why only three weeks between cycle 4 and 5, versus about 8 weeks for the other cycles? You seem to get a spike 4 weeks after each cycle, followed by a drop, so I'll be curious if you do get a drop after your last infusion.

I agree it looks like it's time to move on, but being only at the start of my journey I don't really have any great advice. I do hope, whatever you end up doing next, you get one of those exceptional responses that will give you many more years.

Wow, 17 years. That's both impressive and daunting. Has that time included long periods of disease stability?

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HighCadence

Thanks Tom. They brought it forward because of the blood tests and testing people around a machine shut-down/Xmas. I had four and a half great years on Abiraterone.

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Nalakrats

Yikes---17 years! I would consider that a blessing, but no one should have to go thru the misery, that we allow ourselves to be subjected to---to gain extra months of more misery.

I am not a fan of Chemo. I do not know how old you are--and the Lu-177 has held you steady, until it itself has stopped being effective.

Since you are Germ-line BRCA-2, as I am, your options have moved towards Immunology. Hope if you have progeny you passed on to them that they need to be evaluated, for BRCA-2.

The number one PARP Inhibitor specific to BRCA-2 is Olaparib. It does a nice job for a certain number of men. About 50 % of those treated, will see either no progression of the disease, or have marked improvement. I believe there are still open trials in the USA ongoing, maybe combined with another agent. Not yet approved by the FDA for Prostate Cancer, but has been approved for years for women with Breast Cancer, having the BRCA-2 Gene Mutation.

Doctors can go off label and use it, today. But there is cost to this. If you are at a Group that is considered to be an institute of excellence as related to Pca, they will be doing Pca research, and be involved in numerous trials.

A long shot is BAT, but we do not know how it works with those having BRCA-2.

I pray things work out for you. Where do you Live, Age, and where do you go for your Treatments?

Nalakrats

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HighCadence

Thank you Nalakrats. I’m 54 living in London, alternating between private clinics and the Royal Marsden. I’ve had Olaparib, lots of chemo, abiraterone, enzalutimide, Radium, et al. Everything, in fact, apart from immunotherapy. Just trying to decide which type, or if I’ve missed anything. Appreciate the reply. David.

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Nalakrats

Olaparib is immunology as a single drug--I thought you might have been from England when you used the term Lu instead of Loo. There are Car-T techniques, ever changing. This is where they take blood out and retrain your T fighter Cells, and infuse them back into your body.

Since most of your activity seems to be in your spine---you may want to check out DaRT, I did not misspell this--it is available in Israel. It uses an Alpha Particle instead of the Beta Particles given off by Lu-177. And appears Alpha Particles are mean killers--but depends on the tumor Load and location---I did a post on this about 8 months ago--you might search it in my library of posts. You can Google it and probably come up with the University in Israel, and contact points.

Like i said earlier--BAT should also be in your library.

Nalakrats

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HighCadence

Thank you - I’ll check it out.

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Whimpy-p

54 -17=37 ..... I hate to say it but that’s a hell of row to hoe. You’re amazing what you’ve been through . I’m blown away .. by you... I don’t have any treatment advice . However I Hope love shins on you during this vast journey . You really seem to be a steady person . Admirably strong . 🙏

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HighCadence

Thank you Lulu700 - and may they shine on you too.

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Whimpy-p

Thank you young man , God Bless🙏

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Nalakrats
Nalakrats
in reply to Whimpy-p

Can you imagine getting Pca at 37 years old---that is half of your good sex life.

Nal

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Whimpy-p
Whimpy-p
in reply to Nalakrats

No Nal, I Can not. I flipped out with rage because I was early to the stage #4 party I thought at 53...My good man cadence was’nt even middle age yet .. bless him ..He’s a special dude to have survived what he has .I have no right to complain now or about those 52 years that I was never sick . I did take note of one young man of 16 with APC ..That ain’t right.. Take care Nal. Shalom

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Nalakrats
Nalakrats
in reply to Whimpy-p

There are some reports and evidence that more and more men are getting Pca at an earlier age. When thinking about HighCadence, I was reminded the same thing is happening with women's Breast Cancer---more and more are being DX in their 30's even early 30's. Both these diseases are Hormonal-----Is it in the water? God only knows. It is getting to the point that Pca will overtake Lung Cancer as the number one killer of men.

May, The Holy One Of Israel, have Mercy on all of us with this disease.

Shalom Gadol,

Nal.

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Whimpy-p
Whimpy-p
in reply to Nalakrats

These hormonal cancers are on the rise. Just a sign of the times and the demise of the human race ..

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Nalakrats
Nalakrats
in reply to Whimpy-p

Cannot wait for the demise of the Human Race--that means we have for some of us obtained passage to Heaven. In the Book Of Revelation--it says God will provide a New Heaven and Earth--that the old things must pass away!

Nal.

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Whimpy-p
Whimpy-p
in reply to Nalakrats

Amen

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HighCadence

That has been a major issue. I’ve tried lots of things - injections etc - but nothing has worked that well. If I’d known I’d get 17+ years I would have had implants.

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Nalakrats

My Implant that I have had in for a year since my last vacation in 2018, gets taken out this afternoon, to start my 2020 vacation. Prayerfully the vacation lasts all of 2020.

Nalakrats

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TJGuy
TJGuy
in reply to Nalakrats

Nalakrats. Hi based on your post above I believe we nearly crossed paths today. I would have enjoyed meeting you.

I completed salvage radiation this morning possibly at the same location and have a question.

So while receiving that whole pelvic IMRT PBLN +ADT I discontinued taking all antioxidants, I wonder when the right time is to begin taking antioxidants again?

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Nalakrats
Nalakrats
in reply to TJGuy

Where do you think we might have crossed paths?

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TJGuy
TJGuy
in reply to Nalakrats

You have mentioned LCI in your previous posts concerning the implant. I receive care at LCI as well.

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Nalakrats
Nalakrats
in reply to TJGuy

I was there last Weds, of last week.

Who is your MO?

Nalakrats

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podsart
podsart
in reply to Nalakrats

Do you think there are any supplements that might be helpful, especially as to the BRACA-2?

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Nalakrats
Nalakrats
in reply to podsart

No---the best treatment is to keep your PSA as low as possible, and do Bone Scans maybe once a year. The only supplement that might have some positives--is Indole-3-Carbinol. But there is not enough evidence to prove viability--just some low level noise.

Nalakrats

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podsart
podsart
in reply to Nalakrats

Thanks

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Magnus1964

I didn't see xtandi as one of the treatments you have been given. You might ask your doctor.

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HighCadence

Hi Magnus. I have had enzalutimide but it didn’t really work and the side effects were fairly hard core. Thanks for replying. David.

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addicted2cycling

Hello David, I have been awake since 3:30AM here in SW FL and must say that I was deeply affected (saddened) when I logged in and read your post. I CAN NOT offer any wisdom as so many here can because I am a relatively recently diagnosed GL10 taking an alternate direction for my treatment that I AM SURE most would say is STUPID and as such not privy to what many with even lesser numbers are experiencing.

Please accept my heart felt desire that you find a resolution providing a halt to advancement, some comfort and peace of mind *ASAP!!!*

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HighCadence

Thank you very much addicted. A few good bike rides would sort me out. Best of luck to you on your journey. David.

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addicted2cycling

COLD FULL MOON celebratory bike ride for me beginning at 5:17PM this afternoon for the moon rise then biking too see the 12:12AM the Cold Full Moon tomorrow and then until the 7:15AM moon set. Should be an interesting 14+hours of riding, or as much as possible. 125 to 150 miles

BTW, I AM one of Dr. Onik's non FDA approved immuno (alternate direction) patients for my GL10. It's a *wait and see* game. Had PSA and Testosterone test draw yesterday and got my bi-weekly Testosterone injection a few hours ago.

Dr. Onik directed his treatment procedure performed by a physician friend while on a LOCAL instead of a general. The video WXYZ123 mentions is very interesting.

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HighCadence

Enjoy the ride. I’m very jealous. I’ll check out the videos. Please let me know how you get on.

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WXYZ123

Do you know about Dr Gary Onik in Ft Lauderdale? Check him out

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HighCadence
HighCadence
in reply to WXYZ123

Hi WXY - I don’t. What’s his speciality?

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WXYZ123
WXYZ123
in reply to WXYZ123

He does a procedure that is not yet FDA approved with approved immunotherapy drugs that’s had full remission for some men. Google him and watch his two YouTube videos

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HighCadence
HighCadence
in reply to WXYZ123

Ok, I’ll check them out. Thank you. David.

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billyboy3
billyboy3
in reply to WXYZ123

ONIK s a radiologist. My concern in reading you article is how he could be giving treatment in the US that have NOT been FDA approved. I saw his bio and also wonder how he is involved in immunology treatments, as a very different speciality.

That said, if it works, then we ALL need to hear about it, if it just yet another pull of smoke, we also need to do that as well, because, for far too long, men have been used as pawns by those less than scrupulous.

So I am many others wait. If this reaches men who have undergone his treatments, please let us know asap. thanks

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Tall_Allen

You've been through almost everything. Maybe a different PARP inhibitor (like Rucaparib, Talazoparib, or Niraparib) combined with Keytruda (approved for MSI-hi) seems ideal for you. Insurance will cover Keytruda, but clinical trials for PARP inhibitors will exclude you if you've already tried one. I expect they will get approved within the next couple of years.

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HighCadence

Thanks tall Alan - very helpful - I’ll look into all of those. David.

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JLS1

Have you tried Zytiga with a different steroid, ie., switching from prednisone to dexamethasone? That worked for my husband. Also, I read somewhere that higher doses of dexamethasone alone, as a single therapy, can work for a while.

There are several articles about this. I just did a quick search and found this one:

medivizor.com/blog/SampleLi...

"This study found that some patients with mCRPC treated with abiraterone acetate can benefit from a steroid switch from prednisone to dexamethasone."

Also niclosamide might re-sensitize cancer to abiraterone and enzalutamide - UC Davis:

> healthunlocked.com/advanced...

> LearnAll

> LearnAll•

> 16 days ago•42 Replies

>

> There has been discussion about Fenbendazole (dog de wormer) and we found out that Fenben disrupts Micro tubules of cancer cells causing mitochondria to burst resulting in cancer cell death (fancy word is apoptosis)

>

> Niclosamide is an old tapeworm drug still used in most developing parts of the world in children who have tapeworm in their stomach and intestines.

>

> Niclosamide is in news as a re proposed cancer medicine because it kills cancer cells by an entirely different mechanism than fenbendazole.

>

> Cancer cells are deficient in a gene, called p53, which is a tumor suppressor gene. Researchers found out that Niclosamide selecively attacks and kills cells which lack the gene p53. Niclosamide causes accumulation of a fatty acid called Arachidonic acid in cancer cells causing mitochondria to release a molecule called Cytochrome C which ends up killing cancer cells.

>

> A clinical trial is on in UCLA Davis where they are combining Abiraterone and prednisolone with Niclosamide to see its effectiveness.

>

> Ideas and opinions are invited about Niclosamide and its cancer killing potential

>

> Also, please share any personal experience with Niclosamide..

>

>

> tango65

> tango65

> in reply to LearnAll

> 16 days ago

>

> The study a UC Davis uses a niclosamide that is different from the niclosamide used in the trial at the UW Seattle. At Davis they use PDMX1001/niclosamide. This compound made by a Biotech company in Sacramento is absorbed by the gut and makes possible for niclosamide to reach anti cancer levels in the blood. Regular niclosamide is poorly absorbed by the gi tract to reach anti cancer levels without using toxic doses.

>

> clinicaltrials.gov/ct2/resu...

>

> Besides the anti cancer mechanisms you outlined, PDMX1001/niclosamide can resensitize the cancer to abiraterone and enzalutamide They have shown in vitro that niclosamide can revert mechanisms in the cancer cells which make the cancer resistant to abi or enza.

>

> Some info about niclosamide:

>

> ncbi.nlm.nih.gov/pubmed/247...

>

> ascopubs.org/doi/abs/10.120...

>

> health.ucdavis.edu/synthesi...

>

> ncbi.nlm.nih.gov/pubmed/270...

>

> ncbi.nlm.nih.gov/pubmed/285...

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MateoBeach
MateoBeach
in reply to JLS1

Do you know if it is possible to get PDMX1001/Niclosamide prescribed outside of the clinical trial?

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HighCadence

Hi JLS1,

I did the switch with Dex and Pred and got anther year out of Abiraterone.

Thanks for the other info - I’ll check it out. Saw this on the forum a week or so ago then forgot about it - so a good reminder. Will circle back with any results. Thanks again. David.

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GP24

You wrote: "I’m open to pretty much anything. Any advice will be gratefully received." So let me mention this:

Recently I did some research regarding the use of DES (Diethylstilbestrol) as hormonal therapy. In the following review tandfonline.com/doi/full/10... the authors mention: "The use of DES as a salvage therapy after first line docetaxel-based chemotherapy in patients with progressive CRPC has been studied by a few investigators." They then mention these studies:

Serrate et al. Diethylstilbestrol (DES) retains activity and is a reasonable option in patients previously treated with docetaxel for castrationresistant prostate cancer. Ann Oncol 2009;20:965. academic.oup.com/annonc/art...

Shamash et al. A phase II study investigating the re-induction of endocrine sensitivity following chemotherapy in androgenindependent prostate cancer. Br J Cancer 2008;98:22–4. nature.com/articles/6604051

Cox RA, Sundar S. Re-induction of hormone sensitivity to diethylstilboestrol in androgen refractory prostate cancer patients following chemotherapy. Br J Cancer 2008;98: 238–9. ncbi.nlm.nih.gov/pmc/articl...

"Re-induction of hormone sensitivity" means that DES did work after Docetaxel. One of these studies concludes: "Since there is no standard of care when progression occurs after docetaxel-based chemotherapy in patients with CRPC, DES appears as a reasonable option worth considering in this setting."

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HighCadence
HighCadence
in reply to GP24

Thanks GP24 - I’ll check that out. Really appreciate the reply. David.

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Whimpy-p

A family vacation sure is due...David ... peace to you young man ✌️

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HighCadence

I think it is Lulu700 - we are thinking of going to see the Northern Lights - something I've always wanted to do.

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Whimpy-p

Go for it. I saw them in Alaska ..Magical!Just dont go into the mouth of an active volcano

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Whimpy-p

It’s your choice to do as you wish ... You show compassion for others and may you receive good likewise..🤙🏽

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HighCadence

Thank you my friend - means a lot .

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Whimpy-p

✌️

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cesanon

You need to change up.

How many intervening treatments have you had since Androgen Deprivation Therapy?

Maybe its time to try it again, but this time with Bipolar Androgen Therapy (BAT). You alternate the ADT with very heavy overloads of testosterone.

For some this makes it castration sensitive again. There are Docs in the US who are experienced with this and are willing to do this.

Jevtana is considered second line Chemo after Cabazitaxel. And it has much less severe side effects. Have a discussion with your Doc about its side effects.

Maybe mix it in with that BAT.

Also when is the last time you had a genetic test. Things change. See what a new test gives you.

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HighCadence
HighCadence
in reply to cesanon

Hi cesanon. i've spoken to the experts at John Hopkins about BAT - they advised against given where i am. Thanks for the suggestion tho.

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cesces
cesces
in reply to HighCadence

" given where i am"

Please explain what that means.

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Sea5
Sea5
in reply to cesanon

Hi cesanon, my dad had a very difficult time on docetaxel, and it failed...his doc isn’t sure he’d fare well (he’s 87) enough to do cabazitaxel (though my dad was game to consider it). So do docs ever skip over cabaxitaxel and go to jevtana, or do they firmly adhere to a schedule of the treatments and religiously try them in order?

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cesanon
cesanon
in reply to Sea5

cabaxitaxel is jevtana

For whatever reason they usually hold that back later after other things are used first.

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Sea5
Sea5
in reply to cesanon

Thanks!

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billyboy3

I am now in year 19, so have been even luckier than you. It is very difficult when one's options shrink, but you have gained a great deal of extra time that many men never and will not have. You have also laid down a framework for others to follow, and at the least, that is someone that we advanced guys can off the next generation of men, who might otherwise die far to early.

I have come to terms myself that at some point, there is no point, and by planning ahead, i.e. my big push for making a bucket List and living large, allows one to approach the end in peace. I have helped many men in their last days, and sadly the end for PC is one godawful horror show. I have prepared my ending in advance, will keep up the fight as long as I can enjoy and do things, but never will I go down that path-i only hope that I have the courage to say goodbye when that day comes.

In the meantime, do as much living as you can, love those close and do good things for those around you! It is not how long we live but how well we live. Take care and go in peace.

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HighCadence

That's the plan billyboy3 :) Thanks for the reply. David.

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Whimpy-p
Whimpy-p
in reply to billyboy3

Bravo billyboy3!👏

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Claud68

Were you thinking about a combo therapy with Lu177 and Actinium 225? Because in the past Lu177 alone seemed not strong enough to treat mets in the bones.

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HighCadence
HighCadence
in reply to Claud68

Hi Claud, I avoided Actinium 225 because of concerns over its impact on saliva glands.

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Claud68
Claud68
in reply to HighCadence

Maybe the combotherapy is less aggressive than act225 alone? My husband had 3 Lu177 shots and took also 4 weeks ago the cholera vaccine Dukoral. We'll see in a few days if his psa is still dropping. He had no bonemets, but Gleason 9 and stage IV cancer, detected in October 2018. And a RP on the 30 November 2018 and than they detected 6 mets on lymphnods and his Psa rose to 4.40.

The last psa test a month ago after the 3 Lu177 treatments was 0.46. Good luck to you.

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HighCadence
HighCadence
in reply to Claud68

I'll add Dukoral to the list. Good luck to you too.

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cesces
cesces
in reply to HighCadence

Have you looked into the I&T ligand which avoids the salivary and kidneys?

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GP24
GP24
in reply to cesces

Where did you read this? As far as I know there is no difference between the I&T ligand and the standard LU177 ligand. The salivary gland expresses PSMA so both ligands will attach to it.

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cesces
cesces
in reply to GP24

1. I believe that I read this on tall Allen's blog.

But there has been some discussion on this here is the forum.

2. I think there are multiple ligands that various groups are testing.

I&T is being used in Germany and Australia.

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GP24
GP24
in reply to cesces

The I&T version was developed at the University of Munich which has the capacity to manufacture it too. I think the clinics are using the I&T version to avoid licensing problems with Novartis which may arise in the future. The I&T and PSMA-617 versions are basically interchangable.

Heidelberg cooperated with a private company called ABX to get the ligand manufactured and this company sold the rights to Endocyte which was bought by Novartis a year later for 2.1 billion dollars. Although the Lu177 development was funded by the German state, the patients will have to pay billions to Novartis to get the treatment after it is FDA approved.

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TFBUNDY

Well it looks like you used all the sledgehammers available to you. As a no risk no loss and cheap option why not consider the Lisanti protocol of vitamin C + Doxycycline + Azithromycin. Certainly won't do any harm. Good luck and Christmas greetings.

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HighCadence
HighCadence
in reply to TFBUNDY

Thank you TF - I’ll check it out. Same to you. David.

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TFBUNDY
TFBUNDY
in reply to HighCadence

Lovely morning in London.....

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HighCadence
HighCadence
in reply to TFBUNDY

It is - shame I've got some work to do.:(

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TFBUNDY
TFBUNDY
in reply to HighCadence

If you are in central anytime you can buy me a pint in Wetherspoons....

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snoraste

That's quite a journey.

I read somewhere there are clinical trials for new "targets" for radionuclides, away from PSMA. If I find it (or anyone else here has it), I can share. Hopefully you still have a long time ahead.

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HighCadence

Thank you.

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scarlino

That is impressive. You might ask your doctor if he thinks your cancer might have morphed into small cell carcinoma. That has happened to me. They treat it with Carboplatin along with the typical chemos or Toposide, which is used for lung cancer. Something to consider as well.

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HighCadence

Thank you, I will. I’ve already had a lot of Carboplatin. Not massively keen to have more.

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Escudilla

Thanks for the update HC! I can feel the gut punch in Arizona. Know that you are an inspiration.

I wish I had something to offer, but at 2 years, I'm a noob. I hope that I can thread the gauntlet as you have. Excellent work!

It's prime biking in the desert now. I wish you could be here. My MTB is itching to hit the trails this afternoon. I'll be thinking of you.

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HighCadence

Thanks escudilla - you’re too kind. I’d love to be there. Miss riding my bikes so much. Have a good time on the trails. David.

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petercraig2

Hello David,

Wondering if you have considered Estrogen patches?

While my situation is not nearly as complex as yours judging by the train of therapies you have been through.

I am using a relatively high dosage of x4 patches changing 2 each day and it has taken PSA from +24 due to lymph node metastasis to <.008 or unmeasurable and testosterone which apparently feeds prostate cancer is also <0 and unmeasurable .

There was some bad press on Estrogen as female hormone replacement which it turns out was due to a poor analysis and the use of oral rather than dermal therapy.

There are numerous reputable clinical data publications online some of which I gave to my oncologist and he agreed and in response to my positive outcomes he is now using this therapy on other patients.

Just a thought as it has minimal side effects and while in Canada I have to pay the cost (C$200/month) it has less risk of cardiac and night sweats etc. than any other therapy.

BTW I have had both the radical surgery and radiation prior to starting Estrogen

Best of luck.

Peter

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ronronHU

Good suggestion Peter! I have been using Oestrogel (tE2) and I'm thrilled with the results. Richard Wassersug has been using it for about 15 years and his PSA is still undetectable.

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HighCadence

Thanks Peter. Think I might be a bit too far gone for that but thanks for the suggestion.

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Trdr

I think you would be a good candidate for Lynparza/Olaparib. This is because of your Germaine BRCA2 mutation. They have seen tremendous success - like over 70 percent of patients achieve progression free status. Contact Johns Hopkins. There may be a clinical studs. Good luck!

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HighCadence
HighCadence
in reply to Trdr

Thanks - but I’ve already had it. Didn’t work unfortunately. I think the sample sizes were probably too small to be significant if I’m honest. But, what do I know. 😀

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ronronHU

David, Please read Petercraig2's reply above. You may also want to read my history with the use of estrogel...basically the same therapy as the patch except that IMO it is easier to use and far less expensive.

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Murph256

I’m sure you don’t want to hear this, but if I get 17 years from the time of my diagnosis, with a relatively good QoL, I’ll be very happy.

My father died at age 65, my mother at 63, my wife at 56, my brother at 40.... Well, you get the idea...

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HighCadence

I’m very happy too Murph. Doesn’t mean I’m ready to die now tho.

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Murph256

No, of course not. Sorry to be insensitive. Good luck!

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HighCadence

No worries.

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monte1111
monte1111
in reply to Murph256

Ouch.

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blueCello

Dear David,

I am so sorry to hear that Lutetium is suddenly not working for you.

My husband Paul is seeking his third treatment and we've just been informed that his appointment is cancelled due to "big capacity problems."

He took Provenge immunotherapy last year. It helped him a lot for one year. You might look into that.

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HighCadence

Thank you bC. I’m thinking about Provenge. Glad you got a year out of it. Hope you get the lutetium issues sorted soon.

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nycrunner

Hi

View the YouTube video of Bill Doyle giving a TED presentation on PEMF.

That is Electromagnetic Theraphy.

I bought a device from E Pulse Magnetics in LA in July.

It has been effective.

My latest PET Scan report this week indicated no sign of avid progression and "subtle evidence of healing sclerosis".

It is a time consuming protocol of 30 minutes x 4 time per day at 4 hour intervals.

It reboots the electrical charge in your cells and leads to killing off the bad cancer cells.

It is not promoted as a cure but more as a pain relief.

I guess claims of being a cure would run into all sorts of liability issues.

Good luck

Dave

New Zealand

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HighCadence

Thanks Dave - I’ll take a look.

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Currumpaw

Hey HighCadence--!

So sorry to hear of your plight. Have you tried diet changes? I imagine you have.

Currumpaw

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HighCadence

I did for quite some time. Have fallen back into bad habits now though, so it’s something I can work on..

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whatsinaname

Don't give up anything you like under the impression that it will do you some good.

That is my theory and I live by it.

Cheers, David.

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j-o-h-n

17 years? You were diagnosed at age 37.... Looking at my crystal ball computer I figure you'll still be complaining about not being able to ride a bike at the age of 88. Index and Middle fingers to those tiny bastards....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 12/11/2019 8:37 PM EST

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HighCadence

Oh no John, anything but not being able to ride my bikes again! 😀

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mjbach

What a great post so full of ideas for our desperate times! Thanks to all.

My husband is 19 years since diagnosis and has gone through years of maiming treatments. He still enjoys life working two days a week at Habitat for Humanity when I don't have an extended trip planned to keep him from it.

Today, I am on pins and needles waiting for yesterday's PSA results. One would think that after all these years I could just relax and not get freaky.

Husband had an unexpected, amazing 3 point drop last month but we don't know if it's the Zytiga or Fenben or part of the Fenben protocol or the magic of Provenge 3 years ago. Whatever, we will take it, fingers crossed, these are the best of times.

From what I recently read Keytruda only works in a select few people with certain gene mutations and there is difficulty in screening just who will benefit. If you get lucky with Keytruda it can add two years to your life but with potential serious side effects. It almost killed our neighbor who had a terrible reaction to it. He died a shortly afterward.

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HighCadence
HighCadence
in reply to mjbach

Ah, the tyranny of the blood test. A Russian roulette situation. I know exactly how you feel. Hope things continue to go well for you both. David.

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Cisco99

Your track record inspires me. Way to go!

1 like
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HighCadence
HighCadence
in reply to Cisco99

Thank you Cisco. Happy holidays.

Reply
GP24

Ac-225 works better than Lu177 when there are bone mets. To avoid the side effects of a Ac-225 therapy you can have a combined Ac-225/Lu177 therapy:

news-medical.net/news/20191...

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HighCadence
HighCadence
in reply to GP24

Not sure the funds will stretch to giving this a go, but thanks for the suggestion GP.

Reply
GP24
GP24
in reply to HighCadence

Yes, every cycle costs a lot of money. As far as I am aware the combination or "Tandem" treatment costs about the same as a Lu177 cycle.

1 like
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HighCadence
HighCadence
in reply to GP24

That’s a good point. Could have that as the final cycle - rather than the straight Lu-177 shot. Having said that, I’m a bit worried about the issues pointed out by tall Allen

Reply
HighCadence
HighCadence
in reply to GP24

Could I just ask what your background is and whether you have any links to the German hospitals giving this treatment? I ask because your knowledge is very impressive. Thanks again and happy Xmas. David.

Reply
GP24
GP24
in reply to HighCadence

If you respond to the combined cycle this does not need to be your final cycle. I do not know where you got your Lu177 treatments so far, it may well be that they can do the combined treatment if you ask for it. In general if you contact possible clinics you have to make clear that all you want to get is this combined treatment – and not their standard of care. Of cause Prof. Ezziddin in Homburg/Saar who wrote the article I mentioned will do it but he seems to have capacity problems currently. Heidelberg and Munich can also do it. Bad Berka did it as well but Prof. Baum has left now so I do not know how they proceed. You may have to wait longer for the combined treatment than for a Lu177 cycle because Ac-225 is more difficult to get for the clinic.

I am a PCa patient in Germany who does a lot of research regarding prostate cancer. I had one cycle of Lu177 which wiped the lymph node mets off the PSMA PET/CT.

I would not worry about the issues pointed out by tall Allen. I never read any references to repopulation in conjunction with a Lu177 therapy yet. It is probably a very rare occurence that a Lu177 therapy makes things worse, if it happens at all. Patients with limited options left should not worry about this.

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GP24
GP24
in reply to HighCadence

David,

a week ago there was the first ICPO conference at Bad Berka. The following slide was presented there, excuse the very bad quality:

up.picr.de/37468088pv.png

As you can see, this patient progressed while receiving Lu177 threatment and after that responded very well to the combined Ac225-Lu177 treatment (=TAT).

On these conferences they always show the most impressive cases. But as you can see, the combined therapy can have a benefit for patients progressing during Lu177.

Andreas Türler presented on different radionuclides and showed this slide which he got from Prof. Baum. Prof. Baum had treated this patient.

1 like
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HighCadence
HighCadence
in reply to GP24

Thanks very much for passing this on GP.

Reply
jdm3
jdm3
in reply to GP24

Did Dr. Baum retire or go somewhere else?

Reply
GP24
GP24
in reply to jdm3

He will work for a clinic at Wiesbaden. This is currently setting up a nuclear department to offer Lu177 treatment.

1 like
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