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 🙏. Thank you.
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lcfcpolo
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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.
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.
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.
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.
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.
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!
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.
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.
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.
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.
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.
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.
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
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.
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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