Small cell advanced prostate cancer s... - Advanced Prostate...

Advanced Prostate Cancer

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Small cell advanced prostate cancer spread to liver and lungs.

lcfcpolo profile image
lcfcpolo
β€’29 Replies

This is a request for a near neighbour and friend of mine, Justin, who lives 2 streets away in the UK. He is appx. 53. Please do not read the history in my profile as that sadly relates to me. Justin was diagnosed with a PSA over 100 and widespread to bones.

Justin has burned through the treatments in just over 16 months, Apalutamide, Radiation, Docetaxel chemotherapy and Cabazitaxil chemotherapy. He is on monthly Lupron injections. As far as I know, no DNA mutations found. He was given the devastating news today that Cabazitaxil has failed and his cancer is now 'small cell, spread to liver and lungs '. A different chemotherapy has been proposed (now confirmed as Carboplatin + Etoposide). Please does anyone have any suggestions, recommendations πŸ™. Thank you.

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lcfcpolo
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29 Replies
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londoncyclist48 profile image
londoncyclist48

Obvious question but has he been offered enzalutamide?

lcfcpolo profile image
lcfcpoloβ€’ in reply tolondoncyclist48

No. Just Apalutamide which lasted about 6-months. It might be a UK thing to only get offered one hormonal 'lutamide'. Do you think that Enzalutamide might help? he is aware I'm on it.

Benkaymel profile image
Benkaymelβ€’ in reply tolcfcpolo

The NHS will only give one lutamide. Once that fails, no more ARI is offered.

MoonRocket profile image
MoonRocket

targetedonc.com/view/bxcl70...

This is an interesting study being conducted with positive OS results....maybe he can get admitted.

Very sorry for your neighbor...guy punch for sure.

lcfcpolo profile image
lcfcpoloβ€’ in reply toMoonRocket

Thank you. It is very interesting. I'm going to compile a list of replies for him. I couldn't see that this was available in the UK but we can investigate further. Absolute gut punch. He has a teenage daughter as well. Was given 2 months to 18 months today.

MoonRocket profile image
MoonRocketβ€’ in reply tolcfcpolo

I did a search on that NCT # and it had a few sites in Europe including UK

Benkaymel profile image
Benkaymelβ€’ in reply tolcfcpolo

It's available in Glasgow, London and Sutton, Surrey.

lcfcpolo profile image
lcfcpoloβ€’ in reply toBenkaymel

Thanks. I'm struggling to find the link. Is it on the Cancer Research UK website for clinical trials. My apologies if I have missed it.

Benkaymel profile image
Benkaymelβ€’ in reply tolcfcpolo

Here it is: clinicaltrials.gov/study/NC...

lcfcpolo profile image
lcfcpoloβ€’ in reply toBenkaymel

Cheers. I missed this first time looking. Brain fog. Really appreciated.

NickJoy profile image
NickJoy

Where does he live? is he able to access any of the good centres like Christies in Manchester or Royal Marsden for a trial?

Or, I think he can get a visa no problem to enter a trial in USA, trouble is many additional costs for testing that are usually covered by insurance for USA residents but if he has some cash it might be worth it.

Have you checked the trials listed in tall Allen's website? those may have some European/UK sites.

Fapi theranostics may give some benefit - could contact Dr Sen in India about this. She is very knowledgeable but it is still experimental and self pay.

I wish your friend the very best of luck.

lcfcpolo profile image
lcfcpoloβ€’ in reply toNickJoy

Thanks Nick really appreciated. Leicester here but your right, this is the time to get down to The Marsden for a second opinion and insight into what is possible. USA trials are a good point as well.

I'm going to see my friend when he feels up to it. Thank you for the link with Dr. Sen. I have messaged Dr. Sen a few years ago about me. I'm not thinking straight, no idea how Justin is after this morning's devastating news.

Tall_Allen profile image
Tall_Allen

That's very sad. As your friend found, the normal remedies (hormonal and chemo) don't work. FWIW, here's a list of what they're trying in the US:

prostatecancer.news/2016/12...

The chemo is usually carboplatin and etoposide. Sometimes, certain kinds of immunotherapy can slow it down.

If anyone has a trial in the UK, it would be Johann deBono at the Royal Marsden.

lcfcpolo profile image
lcfcpoloβ€’ in reply toTall_Allen

You are spot on TA. Just found out that he has been offered Carboplatin + Etoposide and if that if it works then self pay immunotherapy. I've printed out your sheet and will look at the links, as recommended by Nick as well. It is frightening how quickly this is progressing. Thank you for your timely and helpful reply.

AlwaysHoping77 profile image
AlwaysHoping77

Has he had any genomic testing? If MSI high, then good results have been shown for neuroendocrine prostate cancer with pembrolizumab. My husband had success with it for 6 months, but others in this group have used it for longer. For the record, that same chemo regimen you mentioned is also on our list for potential next steps. Hoping to get into a trial first for lu177 dotatate. I wish I had more ideas. We're in the same boat and I will be saving the advice in this thread. I wish your friend all the best - let us know what he ends up taking!

lcfcpolo profile image
lcfcpoloβ€’ in reply toAlwaysHoping77

Thank you. Yes I will provide an update. It's really frustrating regarding the genomic testing. The oncologist has actioned but not provided any results. I've asked my friend to chase as a matter of urgency now. MSI high does appear to have been the hail Mary as someone put it for themselves. I hope that your husband gets onto the trial and well done for advocating and researching for him.

tango65 profile image
tango65

Dana Farber cancer center in Boston has one of the experts in this type of PC.dana-farber.org/find-a-doct...

He could find out about the possibility of an international video consultation with this expert.

dana-farber.org/patient-fam...

lcfcpolo profile image
lcfcpoloβ€’ in reply totango65

Thank you. Great suggestion. I will add to the list. I recall seeing a presentation by Dr. Beltran. What is crazy is that this guy lives 2 streets from me. I had seen him in the pub a few times but someone who knew us both linked us up together because we both had advanced prostate cancer.

tango65 profile image
tango65β€’ in reply tolcfcpolo

Best of luck.

tunybgur profile image
tunybgur

According to Dr Thomas Seyfreid, all cancer cells need two things to grow, glucose and glutamine.Glucose is easy enough to reduce with a ketogenic diet, but glutamine is the most common amino acid in our bodies and if blocked will affect all our systems.

He has developed a treatment that pulses glutamine thus reducing the negative effects on normal cells, but significantly affects the growth of cancer cells which have more difficulty recovering.

His research has been reviewed but has not attracted much establishment support because he considers cancer to be a mitochondrial disease and not a genetic disease.

Do your own research but his argument is quite convincing.

Good luck

Mrtroxely profile image
Mrtroxely

Sometimes I have people who really live with hope and faith.They tell me cures are on the way, don't loose hope.

Some say I look well and their glad I've cleared cancer and am in remission?????they want me to be fixed, even though nothings changed......

It can be frustrating.

I begin to get on that and forget, Today is what we have, and embrace that....

Your friend is probably of an age where his children are still dependent on him???

As for new drugs, my experience of NHS is.

Open your mouth.

Take the medicine given.

And leave....

The lutimides work in the same way.

Hormone injections work in same way.

Doxetal chemo works in same way.

Radiotherapy works in the same way

So, he possibly gonna need a different way.

He's gonna need push for a trial on the NHS

Imuno therapy, litium radiation drugs, BAT

OR

Go private, my doctor is in NHS so I get whatevers on that NHS shelf.

She also has a private practice(I believe conflicts)

I'm sure within that there are many more things and a willingness to explore many more things.

I also would expect him and myself would have been given better scans and gene testing to have shown his strains of cancer earlier???

So, as his friend,

You could set up a crowd fund and get him some cash n go private.

He's gonna be to proud do it himself....

Then least he can have some real hope of some other treatment.

Ps! There's always eating pomegranits, injecting vitamin c, going vegan, strong prayer, cold water dipping, oh and the gaurenteed CBD/THC oils.

All good quick miracle cures!

MoonRocket profile image
MoonRocketβ€’ in reply toMrtroxely

I read your post and I am thankful the USA doesn't have a NHS. There was a real push here in the US, but that has seemed to have subsided. Some areas of our system need adjustments to help with the financial toxicity of the treatments. I'm not naive that everyone has $250k sitting around paying for medical treatment. But on the flip side of the coin, we have access to many more treatments.

The last point I will make is the power of "true" prayer. Most people have a child's understanding of how to pray. I will not lecture you or anyone else and only suggest, if honestly wanting to pray for someone, including oneself, is to learn the correct methods.

Merry Christmas.

Fortran1958 profile image
Fortran1958β€’ in reply toMoonRocket

Don’t discount all socialised medicine because in one country someone has bumped up against a limitation. I know that here in Australia, a sure way for a government to lose office is if they threaten our socialised medical system called Medicare.

lcfcpolo profile image
lcfcpoloβ€’ in reply toMrtroxely

Thank you for your considered reply. Your right with all of this. He has a 13 year old daughter plus older step children. It's just incredibly sad that nothing has worked. Evidently 1 or 2 persons per 100 with advanced prostate cancer get this diagnosis. Immunotherapy maybe the next after the latest Carboplatin chemotherapy. The NHS do fail us all when it comes to gene testing. I'm trying to pull all of the above into a list of possible options.

Mrtroxely profile image
Mrtroxelyβ€’ in reply tolcfcpolo

I think I need change my thinking.It's not the NHS failing.

But who steers the NHS and our finances we pay into that fund it?

Boris had allot of the weak minded people standing in the street bashing pots n pans and giving out jim'll fix it badges to them.

Whilst pushing and squeezing the NHS!!!

Maybe vote for anyone but conservatives and money orientation and see if our community and well being change.

And while I'm on my soap box.

How's about all the cancer charities and other charities not just focussing on businesses and finances..

Apparently we pay for the research and companies pay for advertising and marketing of the drugs we researched, tested, and trialed for them.....

daleboy3 profile image
daleboy3

my advice is to boost his immune system by taking two Black Fermented Garlic Capsules twice a day as it has been proven to fight 14 types of Cancer naturally as Chemo burns living tissue leaving the body very weak I buy the Doctors Best Black Fermented Garlic, Good Luck

Amadeus71 profile image
Amadeus71

Not really advice, but sending these thoughts...πŸ™β€πŸ’ͺ

AlwaysHoping77 profile image
AlwaysHoping77

One more option and sorry if it is a repeat. Our doctor just mentioned Zepzelca (lurbinectedin). We are in the US, so I don't know if it is an option, but wanted to mention it. Used for small cell lung cancer.

lcfcpolo profile image
lcfcpoloβ€’ in reply toAlwaysHoping77

Not mentioned so thank you. Other people have saved this post so it helps add to the information available for everyone. It's quite interesting that maybe the answer is with a drug for a different small cell cancer. You have a good doctor.

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