Sadly my brother lost his battle with PCa on Wednesday night. It was very distressing to see him suffer over the last few week. It is a blessing that he has now passed on. He had been fighting the disease for about 17 years after being diagnosed with PCa with a GS of 9. Low dose braccy followed by RT were his initial treatments. More recently he was on Enzalutamide and the Lutetium-177 and then back on Xtandi. He was too ill to handle Docetaxel.
He was denied access to Veyonda on compassionate terms by his oncologists even though I had presented them with full scientific data from the DAART-1 trial and the medical records of the inventor of Veyonda who as critically ill with late stage PCa, before he treated himself. Today, he is an active CEO of a NASDAQ and ASX companies. Shamefully, the oncologist said their policy was to do no harm. My brother will be cremated next Tuesday.
The specific reason for writing this posting is to issue a warning to all PCa sufferers and that is you cannot take you eye of your condition for a moment if you have advanced PCa. My brother was very well after his fourth Lu177 injection with a stable PSA of about 1. He started to have lower pelvic pain and say his GP. A PSMA Pet scan should have been done, but wasn't. He spent 5 weeks in the States and Canada holidaying. On his return to Sydney his PSA was 100. Two weeks later 315. then 500+. Then over 800. It took him 3 weeks to get to see his Oncologist,, whom he had not seen since he started Lu-177 30 months ago. On seeing his oncologist, he had two different PET scans which showed minimum cancer activity. However, he was deemed to be too ill to cope with Docetaxel. After badgering him, he prescribed Xtandi again. PSA dropped to 500, but he had a bad fall out of a wheelchair, which appeared to exacerbate his spinal cord compression. Result: complete leg paralysis and subsequent withdrawal of all treatment other than for pain management.
The other lesson to be learned from this sad state, is to ensure that your oncologist is not totally wedded to Guideline SOC treatment. There is so much happening in new drug development, that it is not save to be locked into SOC alone.
May my brother Rest In Peace - He was stoic, brave and outstanding right to the End.
Written by
AlanLawrenson
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He was lucky to have you advocating for him. I'm glad he was able to enjoy one final holiday.
Very touching and so much love comes through your post. Thank you for sharing this....it must be very difficult. I appreciate your advice....it does scare me and I do believe you. All my best to you.
Thank you for posting. Also I feel for you for the struggle for the last weeks. I’m just so shocked to hear of how fast his PSA climbed. If you get a chance, how long was he in a wheelchair? The thought about pain at the end is so scary. Thanks for not sugarcoating it though.
So sorry for your loss and his suffering. High psa numbers are common with lu 177, though from what I’ve read it still kills the cancer, another psa quandrum
Very sorry for the loss of your brother. He put a good fight and our fallen brothers in journey are remembered just as those lost on the battlefield. Thanks for this, we honor them and we all learn from every step we made.
Alan we're so sorry to read of your brother's passing. We were really hopeful he would get approval for Veyonda. You tried so hard for the best treatments for him. Sincere condolences. G&J
I haven't been able to thank you all individually as arranging things to meet a short term deadline has been very challenging.
I thank you all for your kind wishes and wish you all the best in your own PCa journey.
I will still be active on this board and my commitment to helping men beat this terrible will only intensify. My first action will be to launch my new prostate cancer book in North America, the UK and other English-speaking countries. I know it contains solutions for some men's cancer. The book is to be changed to dedicate it to one hell of a man, being Brian Stanley Lawrenson.
I'm very sorry and very angry. This is far from the first time I've read a story similar to your brother's.
Oh jeez - I just wrote another long infuriated rant. This probably isn't the time or place for it so I deleted it - maybe I'll make a separate post because it really needs discussion and insight. I'm sorry you lost your brother. I know what it's like to lose a brother, someone you knew and loved since birth, for a lifetime, the feeling of this unique loss is beyond the ability of words to describe. Just know that I'm profoundly sorry.
I am so sorry to hear of your loss. Your brother was fortunate that you were an outstanding advocate for him. Glad he managed to get a final holiday. He sounds like a very courageous man
A difficult post to make. We are all thankful for your words and saddened by your loss. Your brother is now at peace and may God grant you peace as well.
Alan, I’m very sorry to hear about your brother’s passing. He, you, and his family will be in my prayers at church this morning.
I appreciate the wisdom and advice you shared in the wake of your brother’s experience, and the reminder for the rest of us to always be vigilant and proactive regarding our own treatment. I hope your sadness soon evolves into smiles of memories of happier times with Brian.
It is always sad to hear of another's passing. The end of your post--"He was stoic, brave and outstanding right to the End", shows the type of man he was.
My sincere condolences to you. Thanks for the advice you have given to all on HU despite this being your time of grief. Strength of character runs in your family.
My condolences to you and your family. Sounds like your brother fought the good fight to the end. When I read the stories of these men fighting a decade or more with this disease it is always inspiring. I hope you tell your brothers story to others and perhaps one person will get tested who might not of done so. Good luck to you, sir.
So sorry to hear another warrior has lost the war against this monster 😢😢
I am so sorry for your loss and for your brother's suffering. May he rest in peace. Thank you for sharing his story. I, too, am a witness to the devastation of this disease. My brother was diagnosed 3 years ago with Stage 4/GS 10, PC. I pray for a cure.
Alan, you and your brother had so much to give to each other. Special. His pain at least is over. So many of us have, or are, travelling down this same old road, snatching at therapeutic options that promise a delay in disease progression. It can be grim at times, but sometimes wonderfully full of gratitude for what life we share and the camaraderie of others, such as folk in this group.
Thank you for the information. I have been watching my progress closely and will continue thanks for your information. I have been on Zatiga and it's generic for 8 months. My PSA started with a jump to 400 and is now down to 0.7 and testosterone is less than 10. Sounds like your brother was quite a fighter, good for him. God Bless.
Soooo sorry for your loss. I started my PCA journey with spinal compression. Pain was so bad I was collapsed on the grass and the police were called... thought it was spousal abuse or I was on drugs... no just a tumour on my spine diagnosed a short time later.
The tumour was cut out and 4 months later,still learning how to walk I got my skis out and went skiing in the spring sunshine!
18 months later I chose stereotactic radiation instead of chemotherapy for a tumour in my neck... my RO and onc we’re recommending chemo ... fortunately stereotactic radiation was in SOC. Here in Vancouver, Canada the Oncologist has to follow SOC... to keep his licence.
Hopefully Lu177 will be approved as SOC in the US and Canada later in 2020.
Maybe you can fully detail your story about refusal of medication you wanted for your brother. Many people on this site have travelled to Germany, Australia for Lu177.
MY CHOICE to have stereotactic radiation instead of chemo has kept me on Zytiga and a current last PSA of <0.008. And I went skiing and played soccer last week!
But I realize anytime my PSA May rise and tumours grow. So if Veyonda was looking a good possibility or Lu177 I would want access. In Canada I cannot even switch to Xtandi from Zytiga under SOC.
So Alan, keep active and advocating for us all. And again so sorry for your loss.
Thank you for your kind words, one and all. I feel that with my extensive knowledge of prostate cancer, my brother should not have died. There are 650+ PCa clinical trials alone in the USA at this time. I am aware of a fair bit of this research, but well less than 25%. All the time there are promising new developments that might offer compassionate use, that might extend life until some other therapy is approved, etc.
This is where you cannot afford to have an oncologist that is totally focussed on SOC. I cannot be responsible for my brother's recklessness by not being keeping totally focussed on his condition, but I knew his oncologist was totally wedded to SOC.
I presented him with data of a Veyonda patient that was partially paralysed, and with late stage disease, and was dying, who today is in apparent excellent health.
So it essential to have an oncologist prepared to look outside the box. I know it is illegal to do so in some jurisdictions.
Please don't interpret my response as bitterness - it's just frustration, and I agree we can't have open-slather with any new 'cure'.
Your love for your brother and your sadness, frustration and anger about his death are strong. I read some of his past posts and he saw that he was very intelligent and was obviously willing to try whatever he believed would work best. He was incredibly courageous in researching and trying new treatments and then sharing that information with other PCa patients.
It sounds like he lived quite a life and lived it fully. I don't know what age he was when he was diagnosed or when he died but to live 17 years with a Gleason 9 is an awesome feat to have achieved!
You obviously did all that you could within the confines of western medical practice that subscribes to rigid protocols. In the US and probably in Australia, they are often driven, as much by the fear of law suits, as they are by medical ethics and can feel very unfair and unreasonable. Many of them do protect patients against being experiments for greedy pharma and researchers, that hold little hope for success, and others may prevent patients from receiving treatment that might save them.
We all want to receive the latest and best treatments out there and perhaps one of them will be a complete cure in the future. I agree that we should all keep asking questions and pushing the envelope for trying new promising treatments. I also believe we must accept that sometimes the time and circumstance are not right and our time has come to move on. Only your brother and you can pass judgement on that for his situation.
It sounds like your brother was an amazing person and I believe that he is at peace now. I wish you the time to grieve and to remember all that you and your brother shared, and that you will always share. I hope you can, over time, make your own peace with his death for yourself and to take your feelings of sadness and loss and focus them in a positive way that gives you happiness and may help others.
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