Stage 4, Chemotherapy failed, liver brain and bone mets

[dottygeorgie]

Hi everyone, i have never posted although done lots of reading over the last few years. My wonderful has just neen told the cabazetaxel hasnt helped and he now has spread to the brain. I cant actually believe im writing this as im so scared for him, my heart breaks. He's 73 just turned and been battling now for 5 years. When he was diagnosed it had left the prostate and gone to the lymph nodes so we have done the hormone therapy including zytiga and then chemotherapy with docetaxel, which did nothing but accelerate the cancer to everyones surprise. At that point it was under fairly decent control. My question is, even at this late stage i still want to explore every option even when the oncologist just recommends we accept the terminal prognosis and call mcmillan, he has been truly awful. I want to explore the Lu -177 Treatment and i wanted to know if any of you thought it was a good idea or not, given the stage were at. Many thanks for taking the time to read.

Stans son, Michael

[NotAlwaysSunshine]

Hi Michael - very sorry to hear that your dad is progessing. My husband has a similar diagnosis. We can't find anything to slow the cancer down. Did you dad have any radiation to any parts of his body that may help slow the progression? Where do you live?

[dottygeorgie in reply to NotAlwaysSunshine]

hi there, im sorry to hear your husband is in a similar situation. Initially my dad had radiotherapy on the prostate and lymph nodes but that was 4 years ago and we havnt had any since. Possibly because the sites are too many for that.

[dottygeorgie in reply to NotAlwaysSunshine]

we are in birmingham, UK.

[NotAlwaysSunshine in reply to dottygeorgie]

Would it be possible for your father to seek out a 2nd or 3rd opinion for the Lu177? Don't give up!

[dottygeorgie in reply to NotAlwaysSunshine]

I really don’t want to give up, even if we try the LU and it doesn’t work, I will rest better knowing we tried. I just wasn’t sure if it was a good idea given the stage were at I guess, as the last thing I want is to make him even more unwell.

[NotAlwaysSunshine in reply to dottygeorgie]

A second and third opinion will give you that peace of mind. I hope you find peace. Bless your family.

[dottygeorgie]

Thank you. God bless you and your husband, and I hope you guys find a treatment that works for him. Please leave no stone unturned.

[Tall_Allen]

Suggest both a PSMA and an FDG PET scan. Has he had a biopsy of any metastases?

[dottygeorgie in reply to Tall_Allen]

Hi Alan thank you for this, and for replying. I want to roll the dice until there’s no options left. He hasn’t had any biopsies of Mets, the NHS is ver basic here in the UK.

[Tall_Allen in reply to dottygeorgie]

There are many clinical trials in the UK, Most require biopsies. If you can get referred to Johann deBono at Royal Marsden, he is the lead investigator on most of them.

[tango65]

I am sorry about how the cancer progressed despite of the chemo treatment.

Most clinical trials exclude patients with brain metastases unless they have been previously treated (usually with radiation) and the patient is neurological stable.

I would push to get a biopsy , direct if possible or a liquid biopsy to see if there are mutations which make the cancer sensible to specific therapies, such as Olaparib or similar, keytruda or similar or IHC and histological markers which could indicate that treatment with cabazitaxel and platinum compounds may offer some control of the cancer.

For Lu 177 PSMA he will need to have a PSMA PET/CT to see if there are metastases which express PSMA with high SUV vales, ideally similar or higher than the liver. Lu 177 PSMA is a systemic treatment and it will treat the mets anywhere. I am not sure if it could be used in patients with brain metastases.

[NickJoy]

I am so sorry about things being so difficult. I think I would push for a referral to one of the Marsden trials but it is also probably worth getting a private appointment with De Bono separately to the NHS system and getting him to refer or advise as to the best trial to choose. I hope all goes well.

[MateoBeach]

I believe Genesis Care has a Lu-PSMA treatment clinic in England also. The above mentioned referrals and scans are on point. Good luck.

[Jennifer1800]

Don't give up. My dad (in the US) had exhausted all treatment options. Bone metastasis. Beat up by all the chemo, etc. so we were concerned about his tolerance for most treatments. Just had his 3rd LU 177 treatment. Everyone is different but he has tolerated it well and has had a great PSA response.

[dottygeorgie in reply to Jennifer1800]

Thank you Jennifer, I hope your father continues to respond well. I went to see my dad today and he’s deteriorating quickly, I think I’m caught in a crossroad where I want him to have the treatment but I have to understand if he’s well enough to try. He’s generally exhausted, and to think of bundling him into a prepaid taxi alone to genesis care London seems like too much punishment. I really hoped he’d recover a bit after chemo to gain some strength to try, but at the moment he seem to weak to go anywhere.

[Stephen399b in reply to dottygeorgie]

I also live in Birmingham (Bromsgrove side). (Age 71)I have PC with metastases. There is a PSMA scanner at Cobalt in Cheltenham. cobalthealth.co.uk/

I have had 3 scans so far through my health insurance but I know you can be referred by the oncologist, but may have to pay?

Are you being seen at the QE? My oncologist and urologist are from Worcester Royal. Not sure if they are better or worse. Keep in touch

Best wishes to your Dad

Stephen

[dottygeorgie in reply to Stephen399b]

Stephen thank you. The Option to have the pet scan is fairly local but the problem is the LU treatment is Windsor which is far. He’s just too weak to leave the house it seems. Thank you for the response and keep fighting.