Reoccurrence after failed ERBT

[deano58]

Hi everyone,

I am currently on intermittant ADT and would like to get in touch with others

going through same.

Cheers

[deano58]

Hi again,

To cut a very long story short-- Dx 2006 age 48, PSA 5.1, GS 7b.

Had ERBT, all seemed good for about 5 years, then Dx with biochemical relapse 2014,

with right common illiac lymph node met and "suspicious spots" in pelvic bones.

Started LUCRIN, Oct,2015. Currently off treatment for 6 months, PSA rising rapidly.

Cheers

[rhbishop2]

After failing RRP and EBRT I was on intermittent Triptorelin (Trelstar) for 6 years, achieving PSA <1 each time for 5 cycles. This year my PSA refused to go below 2.5 and is now hovering around 4 on continuous ADT. Will probably have PET Choline scan in 2017 and consider other options. I am 71 and was first dx in 2009. Happy to share other details.

Bob

[deano58 in reply to rhbishop2]

Hi Bob,

Thanks for your reply. Good to hear about someone going so long on intermittant ADT. Can I ask what your testosterone levels were if you got them checked with PSA?

Mark

[lowroad]

Had HDR-Brachy + EBRT but Cancer comes back, disgnosed by PSMA PET-Scan and mpMRI. Choose IRE/Nanoknife + ADT as salvage therapy.

[deano58 in reply to lowroad]

Hi Lowroad,

Thanks for your reply. Could you explain "IRE/Nanoknife". I've been told because of ERBT, only treatment option is ADT. But I live in Australia, I have learned we are lagging in Pca research and treatment. I even found out about a treatment protocol in the States where they use Chemo with ADT immediately for metastatic disease, but my Onc. had never heard of it!

Mark

[lowroad in reply to deano58]

The standard options for local, non metastatic, recurrent after failed Radiation Therapy are Salvage Prostatectomy, Cryo, HiFu, IRE or palliative ADT.

IRE is like Brachy, using needles around the residual tumor area and pulsing of very high voltage which destroys the surface of normal and cancer cells, but preservs nerves and lining tissue. Very small risk of incontinence – this was the basis of choosing IRE, for me. For more infos google IRE or Nanoknife.

From Germany,

LowRoad

[smroush]

I was diagnosed in July 2012 with a Gleason 9 prostate cancer that had metastasized to my bladder and pelvic lymph nodes. I started ADT immediately and had radiation therapot in November/December of 2012.

I was on the ADT (Lupron and Casodex) for 26 months. From January 2013 on my PSA was undetectable (it had never risen above 10).

I stopped the ADT in October 2014 and am still off it. My PSA is currently 0.2. Overall I am doing much, much better than I expected at the time of diagnosis.

The ADT had lots of side effects, but they were relatively minor and more an irritant than anything else. Overall I felt my quality of life was quite good while on ADT.

I am getting lots and lots of exercise and have adopted a vegan diet in hopes of slowing the progression. Don't know if the diet and exercise is helping but something is working well!

[deano58 in reply to smroush]

Hi smroush,

Thanks for your reply. Congrats for you doing so well. I too had all the side effects from ADT., including 40 -50 hot flushes daily. I do believe exercise is very beneficial both in controlling the ADT side effects and helping to fight the cancer.

Mark

[Joeym1040 in reply to deano58]

Original diagnose 1999. EBRT + seeds. Cancer came back in 2011 and have been on intermittent since. Most serious side effect for me was also HOT FLASHES. Had one every 45 minutes, 24 hrs a day, 7 days a week 365days a year. Sever sweating had fans all over my house with remote fan by my bed so i could cool of every 45 mins. No drs offered any help for the hot flashes. A nurse recommended Venlafaxine (effexer) 75mg. It did reduce the severity of the hot flashes in nbr an severity, T then went into a clinical trial for the past years using an estradoil cream. it was a blind study so i do not know what dose i received, but my testosterone went to 0 and my psa stayed below .02. The trial ended in Dec 2017. Since about last Oct-Nov the hot flashes started coming back. Not as often and not as serious but are back and no one knows why. When my PSA start to rise again i will either go back on Lupron or try the estradiol patches. I would suggest trying the venlafaxine.

[Joeym1040]

I'm with you brother. EBRT 12/99, Seeds 2/00, recurrence 2011. Been on IADT since then.

Seems to be under control. Hot flashes every 45 mins since inception. Never goes away even when off Lupron. Just now starting to feel fatigued (age 76). Thinking of going into a clinical trial that uses Estradoil cream. Supposedly reduces. On of my Drs says yes, the other not so sure.

Regards, Merry Christmas, Happy New Year.

Joe

[deano58 in reply to Joeym1040]

Hi Joeym 1040,

Thanks for your reply. I'm happy for you having it under control.

All the best,

Mark

[Hidden in reply to Joeym1040]

Hey Joey. I've only been on ADT (eligard) for 4 months. I'm not having much trouble with hot (and cold) flashes. I put soy milk in my morning cereal -- I had heard that soy could help with the hot flashes. I am hoping to get off ADT when I get my PSA tested in a couple of months. I had HIFU surgery in October. Fingers crossed that the cancer was put down.

[Joeym1040 in reply to Hidden]

I have a good friend been on iadt for 5 years. Has no side effects! Everyone reacts differently. Hopefully yours will be minor. At any rate a small price to pay for life. Have a Merry Christmas and a happy new Year!

[deano58]

Hi Nalakrats,

Thanks for your reply. I suppose that's the reason I go looking for places like this-

to try and get a bit of reassurance and hope from other guys going through this as well. When first Dx in 2006, the pathology was 4 out of 12 cores positive G 4+3 (7),all from left apex, so staged T2A. Apparently I think around 2010, the world wide consensus changed a "4+3"Gleeson to "7b" ( as opposed to a "3+4") making it high grade on the same level as an 8 ,9,or 10. This now makes sense because the prostate MRI I had in 2014 to dx the relapse stated "high grade disease in prostate and RCI lymph node". My Onc has suggested that the cancer cells that survived being nuked have evolved and become more aggressive, and don't produce much PSA. Regardless of all this, it did respond well to the ADT. However, the Dr did say that because of my age (58), my testosterone will recover very quickly,and so to will my PSA. I have found research that says that during the off cycle of ADT, the PSA will rise rapidly until the "hormonal environment stabilizers". then it will slow down. A bit like throwing petrol on smoldering embers in a fire I guess.

Getting another PSA test early Jan. If it's 10, I go back on treatment.

Mark

[deano58 in reply to deano58]

I should have stated that research suggests that the PSA will rise rapidly IF the testosterone levels rise rapidly during off cycle ADT. Testosterone recovery of course varies.

Mark