CSN Login
Members Online: 4

You are here

Achieving undetectable PSA levels?

foamhand
Posts: 79
Joined: May 2016

Hi all, as you know my clinical trial is showing very good signs of success at this point. PSA down from 7.1 (at diagnosis of Stage 4 locally advanced Pca) to 1.0 and still falling. Taking Lupron and TAK-700. At first the drops were dramatic, almost cutting PSA in half within 2 months and then dropping quickly to 1.5 in Sept. The drop has slowed considerably to 1.2 on Oct 10, and then 1.0 on Oct 26.  I still have my whole infected prostate in place (Gleason 9 in 95% of prostate) and I am inoperable at this point.

I am wondering what the odds are that I will reach undetectable PSA with still having a prostate and if it's unlikely, does this mean I have a greater chance of becoming resistant / refractory more quickly? I know alot is dependent on the success of the clinical trial, and I read the other day where one doctor has a patient successfully on HT for 16 years. I am turning 56 and would like to get opinions on what my odds are that I could make it another 10 years.

Thanks to those who can reply.

foamhand

 

 

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

Foam,

Your wishes for longer period on HT depends on your original diagnosis and present health status. Can you provide more details, such as symptoms, results of other tests, image studies, clinical stage, etc. Age is not the only important "element".

Best wishes for continued drop of the PSA.

VG

foamhand
Posts: 79
Joined: May 2016

Diagnosis was Stage 4 locally advanced to several lymph nodes and right hip femur. Prostate showed Gleason 9 in over 90% of prostate. Bladder or other soft organs not involved yet and there was no distant spread showing on whole body scans, lungs were clear etc.

I don't really have any symptoms that cause me any pain at this time. What cramping and temporary pains I have are side effects of the treatment, along with hot flashes and fatigue from the Lupron and TAK-700 and possibly the Zometa. (The Zometa is preventative at this time.) The scans from 6 months ago when I was first diagnosed showed a very small metastasis to my right hip femur that one doctor said was so small it may go away with treatment. There was also involvment of "several" lymph nodes. The only symptoms I ever had was intense pain / burning and extreme difficulty urinating at diagnosis. I had the TURP procedure which has completely eliminated those symptoms.

I don't have copies of the records in front of me but what I know is the doctors screening me for the trial said my good health is something I had going for me. My blood work comes back with most everything "In range" except for a couple of items that go back and forth in and out of range just a little bit and the doctor doesn't ever seem too concerned about it. My anemia is always borderline outside range and it seems to come back in range every other visit. Liver functions are in range etc.

I'm still working factory work full time and the annoyance of the hot flashes and fatigue toward the end of my shift are the only real issues. My employer says no one seems to think my quality of work is suffering and they are fine with the fact that I have had to "slow down a little" due to fatigue. 

If you need the documents, I can try to download them from The University of Utah website. All I have is mostly bloodwork. No one ever discussed bone scans with me so I took it as they have all they need to know with the hip metastasis.

Old Salt
Posts: 720
Joined: Aug 2014

So far the PSA has dropped nicely and may drop some more. But you still have a prostate that will generate PSA. Hence, I think it very unlikely that you will get to the 'non-detectable' level. What matters is what will happen to the PSA once the hormone treatment is discontinued. Hopefully, there will be a long period ('vacation') where it will stay low.

I assumed that the hormone treatment (Lupron + TAK-700) will be discontinued at some point. Is that correct?

 

PS: ClinicalTrials.gov Identifier: NCT01809691

 

foamhand
Posts: 79
Joined: May 2016

According to Dr. Agarwal, as long as it works, I will stay on it. The trial is currently scheduled to continue until 2020. He did say if I could give him 2 years on this trial he has promising stuff coming out of stage II trials that he could switch me to if this stops working. I guess it's good being on a clinical trial because I have first line access to emerging new therapies. He said he wants to keep me on his "team" as long as I remain a viable candidate. Let's keep our fingers crossed that I don't develop other health issues anytime soon that might disqualify me.

Old Salt
Posts: 720
Joined: Aug 2014

We hope that the hormone therapy (Lupron + TAK-700) will keep the cancer in check for many more years. As you already have experienced, there will be side effects, but hopefully they will remain manageable.

With respect to your original question, Dr Agarwal should be able to tell you how low he expects the PSA to drop as a result of the double barreled attack.

PS: I don't think that any of us should give you odds for living another ten years.

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

You do understand that even Dr. Agarwal do not know the length your palliative treatment will last. In any case, other type of therapy would provide the same ambiguity regarding the duration of the therapy. You have Gleason 9 score in a clinical setup of stage 4 locally advanced to several lymph nodes and right hip femur involvement. This is high risk for extended spread probably out of the reach of a radical approach. The only negative of your protocol is that it doesn't eliminate the cancer setting you with a systemic case.

Continuous hormonal therapies may put the patient in risk to experience earlier refractory. The cancer will mutate and find ways to get feed when its "living" ability is threaten. The way to keep it on the canvas is punching it down each time it tries to "stand". You need to be vigilant using all means of control. The PSA seem to be a good marker for the type of your cancerous cells. The undetectable level/threshold unique of your case is expected to be higher than guys without the gland. Famous oncologists use constant PSA=1.0 as reference of remission in Gs9 HT patients. They tend to manipulate blockades as earlier as possible by exchanging drugs to maintain that status. This kind of procedure is not valid for guys in clinical trials.

Other important tests are the testosterone that will verify Lupron's effectiveness and the bone scintigraphy scans that control/verify deterioration of bone. Apart from being physically fit you need to check the lipids for any trouble caused by the hormonal unbalance in other healthy systems important for one to secure long living periods.

Best wishes and hope for continuous decrease of the PSA.

VG   

foamhand
Posts: 79
Joined: May 2016

Thanks VG, on reflection my question was somewhat silly as no one can guarantee any type of longevity period with this disease. There is a certain amount of mental illness that accompanies this diagnosis so my thinking gets skewed from time to time. However I did get my answer in that having the prostate still in place, my "bottom" PSA may be higher than one without a prostate. The main hope is for it to remain low for as long as possible without rising. Dealing with the if and when it will rise is the biggest mental challenge when thinking about my condition. I know it's best to take it one day at a time but the mind does tend to wander at times.  Take Care. 

Subscribe to Comments for "Achieving undetectable PSA levels?"