A brief introduction

[Teddysdad]

Hello everyone.

My name is Phillip and I live in the UK. I was diagnosed with advanced prostate cancer in November 2016 with bone mets and some in my lymph nodes.

My diagnosis is Carcinoma of the Prostate T3b N1 M1 PSA 226 Gleason 9

.

I have had chemotherapy (Doxcetaxal) and some radiotherapy along side hormone therapy.

After chemo my PSA has drop to 1.6 but started to rise almost straight away and the reading before last was 23 although at the last reading it was at 18.

I am currently on an immunotherapy trial called Neptunes at UCLH which while it has been a bit of a rough ride, I hope it is doing good.

[GP24]

I expect that this trial will help. Ipilimumab has been tested before and was a "near miss", i.e. it almost showed a significant benefit. At that time they did not check for gene defects and it is likely that a subgroup selected by their gene defects did benefit. If you combine Ipilimumab with Nivolumab you should see a benefit.

[GP24 in reply to GP24]

A similar trial called Checkmate 650 did not have good results:

twitter.com/FabioSchutz78/s...

[Tall_Allen]

Do they tell you what your PSA, radiological, and CTC results have been so far?

[Teddysdad in reply to Tall_Allen]

Yes PSA is still rising and was at 23 although last clinic it was 18, so pefhaps a good sign!

What do you mean by radiological and ctc?

[Tall_Allen in reply to Teddysdad]

As part of the clinical trial, they do some kind of imaging, like bone scan with CT or PET scan with CT. That tells you if there is evidence of clinical progression. They also do a blood test looking for the number of circulating tumor cells.

[Teddysdad in reply to Tall_Allen]

Ah yes, they due bone scans and ct scans every 9 weeks, the most recent being 3 weeks ago.

Not great news from the bone scan as new cancer growth is shown in lymph nodes and in one of my lungs. I am waiting for the clinic letter to give me more detail.

Circulating tumour cells have been mention and as I recall it was very low. I have regular blood test but I don't think they measure this every time. I will be asking about it.

[Teddysdad]

It is, it wiped me out over the summer and caused liver toxicity.

[Teddysdad]

Thanks, i believe omega oil helps as well and will look into these.

[babychi]

Hope you get a great result! 🌼🌼

[easeytiger]

Hi Philip. Where are you having treatment. I'm also in the UK and on an immunotherapy trial (ICECAP at Royal Marsden).

[Teddysdad in reply to easeytiger]

Hi, i go to UCLH, how is your trial going?

[easeytiger in reply to Teddysdad]

The trial is going ok. It's a phase 1, I've had no side effect and I'm 5 wks in, scan in a few weeks to determine early outcome.

[joancarles in reply to easeytiger]

I do not have any notion of medicine. But since the diagnosis I thought that Immunotherapy might be a way. At this moment in abiraterona, and waiting for it to continue working.

I would like to know how your progression is going with this treatment. I hope you have a lot of luck

[larry_dammit]

Sorry to hear about the monster, stage 4 with Mets here. 27 months and counting. They put me on Xtandi after the chemo. PSA at 0.05 Good luck Fight the good Fight 🙏🙏🙏🙏

[Kevinski65 in reply to larry_dammit]

Sounds like you're getting a good response on Xtandi. I'm almost 7 years out, 3.5 on Xtandi and Lupron. I was on Lupron alone prior. I never smoke or drink alcohol is that the case with u?

[larry_dammit in reply to Kevinski65]

Kevin. Worked 60-70 hours a week. Moderate drinker, x smoker by several years. 6 month checkup for the past 12 years with my urologist. He skipped a biopsy the last time in favor of a blood test. April 16. 4 % chance of a aggressive cancer, August 16 stage 4 prostate cancer with Mets in my ribs,spine and lymph nodes. Had done annual well care checkups, all preventative resting annually. I very good health at 66. Then it slapped me in the face.

[Hidden in reply to larry_dammit]

Dam it Larry, We get slapped, turn the other cheek , get slapped again. Keep rolling brother!

[lincolnj8 in reply to larry_dammit]

Same here. Worked 60 hrs a week. Never sick age 66, surprise, surprise. Stage4 psa 800. cancer in bones, lymph nodes organs. 3 days in the hospital getting transfusions. Ok for now, one year into this using Zytiga and prednisone daily plus Lupron every three months. I plan to beat this..

[Balsam01]

Have you done genetic testing? With gleason 9, it may be prudent.

[Hidden]

Hoping you get great results!

[paulparry]

How did you get in trials?

I am struggling even at 57 with G9 and bone mets.