Where in being without metastasis means "Watchful Waiting"

[zenbee13]

Hi There,

I've posted now and then, and let me give a refresher and update on my own particular situation;

Diagnosed in 2009 as Gleason 9 and PSA of 15. Almost immediate surgery to remove the prostate via robotically assisted prostatectomy. Clean in the margins. 1 year later rising PSA so 2010 May to July 13 weeks RT 5 times a week.

No readable PSA for 2 years, and then March 2012 on to Lupron. 2016 Lupron starts to lose efficacy, and Then to now through all the available Androgen blockers, culminating with the final failure of Xtandi.

Today meeting with my Oncologist we are in Watchful waiting mode as she looks into a T-Cell inoculation. Which would be the CAR-T Cell therapy. The other option which she feels is not yet warranted is on to Chemo. Basically no metastasis no chemo.

The side effects of the CAR-T cell therapy are a little daunting, but hell no risk no reward, and maybe it helps others down the road. The price is steep, however $10K per month, and I'm unsure of Insurance coverage as it appears to be a trial. The one f'ing thing I want is to not bankrupt my Wife's retirement.

Now I'm in a lot better shape than a lot of our community. No mets and still relatively young and healthy otherwise. (61 years old at the end of June).

What have we heard? Any advice?

Thanks,

Bees

[tango65]

I wonder where are you going to get treatment with CART cells. I heard about City of Hope working in this treament

The cancer is castration resistant and is not responding to ADT and the new anti androgens. Chemo with docetaxel is the usual treatment if there are metastases

[zenbee13 in reply to tango65]

Thank you for the reply. And I have no idea where, when etc.. the Doc will be in contact with me within 2 weeks she said.

You are correct about the Chemo if there is metastasis. I’m just that rate bird to be here without them.

Peace

Bees

[tango65 in reply to zenbee13]

I looked in clinicaltrials. gov and there are clinical trials in Pennsylvania and at City of Hope in Duarte CA.

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

Both trials are for metastatic castration resistant cancer.

[zenbee13 in reply to tango65]

Damn, looks like I'm out as once again they are looking for men with metastasis.

[GP24 in reply to zenbee13]

Depends what the criteria are for the trial your MO comes up with. If you need no mets you can join. If you need mets, just get a PSMA PET/CT and you will have mets.

Very often the health insurance will cover the cost which occur in a clinical trial. You will need to check if you know which trial it is.

[Immd3415]

Gleason 7 control biopsy found cancer without any invasion in my lymph nodes... Everyone is different ; i decided to remove my cancer from my body....there was no complications after surgery....Its been three years and my PSA is less than 0.02. one major problem was with sex....but everyone id different. Doctor said my nerves were good but its hasn't been great in that dept even with meds.... I am 66 and at times I wish i had taken another route but my cancer is gone and thats ALL good.... wish i could give you better advice..ask doctor about nerves being saved....i do any other problems like dripping/leaking...i am normal except for the sex...doctor will give you options about sex...pills... everyone is different...postive : i am running and jogging and exercising...i feel better than ever....hopes this helps

[j-o-h-n in reply to Immd3415]

This always worked for me when I was a young whipper snapper (whatever that is). Anyway, I would go to church on Sunday and see a nice looking woman there and sure enough I didn't want to get an erection but there I was thinking Dear Lord... Please not now, please please please. But alas, little willy wasn't religious so I made sure I was sitting down when they passed around the collection plate (how embarrassing). Now the moral of the story is, if you want a boner go to church on Sundays.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 07/23/2019 5:46 PM DST