Bumming out about possible start of ADT soon

As you can see in my signature, I'm at my 10-year anniversary of my PCa battle. Now that we have tried the potential cures, after surgery and SRT, my PSA is on the rise again. I have been supplementing off and on with T, and with the latest rise (more than doubled in 4 months), my doc says no more T supplements, likely ever.

He said that we will be checking the PSA every 3 months, and expects that I may need to start ADT (Lupron) the next time I see him in 6 months. His criteria dictate that if the PSA doubling rate is less than 12 months, yes on the Lupron, no negotiation. 12-18 months, negotiable, >18 months, we can wait.

I have HMO insurance, and I am guessing that they will not be inclined to authorize any other course of treatment aside from the Lupron. I have been interested in BAT, but he won't agree because he does not have confidence in it /experience with it, although my cardiologist says there would be no significant risks for me.

Has anyone here tried anything else besides ADT at this stage in your journey? I am amenable to improving my diet (I have lost 13 pounds so far, and don't plan to stop until I am at about 15% body fat - about twice what I have lost so far). But I would expect to need a more extensive treatment if I want to compete with the success of ADT.

Any experience with insurance covering something else prior to ADT?
Thanks, Jeff

What part of imagining yourself on ADT with Lupron is concerning you the most?

Charles

Jeff, just want to say I understand your being bummed out over this, even if I don't have any constructive advice. I think it's just part of the territory.
I was bummed out at biopsy. Then I was bummed out when I needed surgery. Now I will be bummed out if I need SRT, which has not yet been determined.
We humans have an amazing ability to adapt. And along the way, at each step, I've adapted to whatever my new reality is. I hope that continues.

And I hope it is the case for you.
We have no choice. (Well, we do, sort of, but it ain't ideal)

Thanks, George.
I know my current med onc is very against Casodex versus Lupron, but I will have a conversation with him about that. I am not inclined to quickly dive into Lupron, even if my doc is insisting.

Also thanks, Pratoman. Like you, it takes me some time to assimilate news, and then I move forward without letting things get me too far down. The 10-year+ journey continues...
Jeff

Im_Patient said...
.....I am not inclined to quickly dive into Lupron, even if my doc is insisting.

Based on my experiences, that's wise, very wise!

Break60, it’s always great to hear from someone on these treatments that has positive attitude about it
It’s encouraging to me and I am sure to others who will have it in the near
Future as in my case. I was so worried about the surgery and then I was
Terrified about the SRT and now every time I think you f ADT, my heart goes down
To the floor, may be after all, it’s not that bad, not sure though. I handled surgery and radiation very
Well so I am hoping when we start ADT, it might be ok too and I won’t deteriorate very
Quickly

Hmmm. My 2 cents. Why worry about that which you have no control? I have been on one form of ADT or another for almost 12 years. OK, I admit it’s not a picnic but it will be OK. Hot flashes are the worst. They do fade however as your body adjusts to a new normal. Fatigue can be combated by staying active. I admit when I first started treatment, all I wanted to do was sit on the porch and lick my nuts like a castrated dog. My wife would have none of it. She bought me a kayak. Worse yet, she made me use it. Then she bought me a bicycle. Once again she made me use it. I still work 50 hours a week at a labor-intensive job. While on the clock I walk multiple miles a day. I walk one or 2 miles after work. I bicycle 35 or 40 miles a week. My wife and I cross country ski, snowshoe, hike, bike, kayak, and participate in multiple water sports. I gained approximately 10 pounds. Sometimes I weigh a little more and sometimes I weigh a little less. I think it depends on whether or not I’m retaining water LOL. . Sex is another animal. FYI the little blue pill doesn’t work nor does Cialis. Apparently those pills only work if you want to have sex. A man on ADT seldom thinks about it. I was determined not to allow treatment to rob my wife and I of physical intimacy. We tried everything. Trimix was the one thing that worked for us. The idea of sticking the little guy with a needle was intimidating at first but after the first couple of times it wasn’t so bad. It has been challenging but I can honestly say that after 12 years my wife and I still make love a couple times a month. Many times we don’t even require medication. I don’t feel sorry for myself. I am alive. I have an amazing wonderful life. The men I feel bad for our those that have had surgery, still have a sex drive, but cannot have an erection. To me, that is so much worse. I do not have a Libido. I use to think it would be terrible to not be able to make love but if you aren’t interested in it then it can be liberating. I have actually turned the tables so to speak. Honey, I am really not in the mood.... cant we just cuddle. Dude it will be okay.

Todd, your comments is just wonderful to read. I like it a lot.
I am very active guy. I don’t do as much as you do ever but for me, I am satisfied with
What I do now and hope to stay like that when I start the treatments
You know wha I just did, I took a snap shot of your comment above and kept
It on my phone and every time, I forget it, I wil go and read it. Thank you.

Bohemond, I am in the N.Y. area but I am not sure what prostvac is. Is it a form of ADT? Although I think
I will not be qualified becuse my psa is .22 at the moment. Can you join
It later? Thanks a lot

Thanks very much Jim. Sounds interesting. I will check with my MO when I see him
Next time and see what he thinks. Thanks again.

Todd, you are an inspiration. I hope whatever happens, I cope as well as you have.

Bohemond, thanks for the information - I am inquiring as to whether I am yet a candidate for their trial - I may be in the next 3-6 months.

As long as I can think clearly to keep my job until retirement, I would be amenable to ADT. You guys have been indicating it is not as bad as I was concerned about - when my T dropped to the range of 110-200 10 years ago, I went in to my doc complaining about a lack of energy and a mental fog. He had a PSA test run (as well as testosterone), and there started by journey. I have managed, when not supplementing with T so far, so am hopeful 0 T is not much worse.
Regards, Jeff

One more thing to be bummed out about: I contacted the administrator of the Prostvac trial, and I am not a candidate for any immunotherapy trial because of my history of ulcerative colitis, even though it has been asymptomatic with medication for over a decade (maybe two). I may be a candidate for a trial just opening for a combo of Casodex and Metformin, as long as I don't lose so much weight that I end up with a BMI<25. It is open to those with BCR that have a PSA doubling rate of 3-9 months.

For those interested (I asked to be considered for whatever they could find that is relevant, before I was disqualified):
There is a new trial that combines 3 therapies: Prostvac in combo with CV301 and PDL1. It is currently being assessed by a safety cohort on advanced met patients, and if assessed as safe then it will be open to those that are BCR with no evidence of mets. They are several months away from taking candidates.

I personally think that the best chance at a cure at this point (after SRT) is an immunotherapy (or at least a lengthening of survival). So I suppose if I choose I will need to pay for one of those.
Jeff

Im_Patient
I'm sorry that your colitis excluded you from the trial, but that other trial sounds promising if it makes it past phase 1. All of these trials have their own inclusion and exclusion criteria, which you can find on clinicaltrials.gov. I was nearly excluded from the Prostvac trial because my medical records had a reference to eczema from my dermatologist. Dana Farber arranged an urgent appointment with my UMass Medical Center dermatologist (it usually takes months to get an appointment) and she confirmed to DF that the minor winter skin rash on my hands a few years ago was not eczema as it is defined by the trial's guidelines. Even though I dodged that bullet I ended up excluded because of the increase in my doubling time. These trials do have to stay within their defined boundaries, otherwise they could end up with invalid results. From our point of view as patients we are hoping for a new and better treatment, but from the viewpoint of the trial we are volunteer lab rats.

AK123
Your MO may not have brought it up because your PSA doesn't yet fall within the trial's minimum requirement which is "more than.0.8". Even though by the usually accepted guidelines you are in BCR once your PSA has passed 0.2, the trial has a higher minimum. This is probably, in part, because it is hard to establish a reliable doubling time before PSA hits 1.0 or so. Your DT looks like about a year or so right now, but you can't know that reliably with measurements still in the low tenths. You can see in my signature that my PSA remained undetectible for several years after SRT and even when it reappeared in stayed in the 0.0x range for a couple of years. However it then began increasing quickly. If your PSA should jump to 0.8 or higher while the trial is still recruiting you could call your MO and ask to be considered for the trial.
Jim

The Prostvac trial in question is yet another kind of randomized trial. Participants are randomly assigned to group A or B, but both groups get the vaccine. Group A starts immediately, Group B starts six months later. Because the trial isn't blind, participants know from the beginning which group they are in.
Jim