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Asymptomatic MHSPCa, can a case be made for delaying LHRH etc until symptoms?

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Posted 4/28/2014 6:51 PM (GMT 0)
My husband, Frank, was diagnosed in February 2014 with metastatic to bone PCa. He started lupron/bicalutamide on 3/4/14. He has experienced debilitating fatigue that is severely impacting his work responsibilities. We are farmers, which requires a significant amount of hard, physical labor on a daily basis. Frank can only work about 2-3 hours before he is done in for the day, with impact the next day, also. We are falling behind every day, weed-control, set-up of irrigation systems etc. I can only pick up so much slack and it would be difficult to hire outside help.
So, I was wondering whether there is any scientific evidence which discusses delaying treatment until further evidence of disease as Frank felt perfectly fine before treatment. This would allow us to farm this year, buff the place up and put it on the market next spring...but, wouldn't want to do if there could be major negative impact on disease progression.

Any information and/or thoughts would be welcome.

Lisa
Posted 4/28/2014 7:44 PM (GMT 0)
Lisa,

Not an expert, and can't give you the science you asked for, but I will say that the idea scares me. Gleason 9 disease can move really fast if you don't stay on top of it, and occasionally even if you do. I'd talk to his doctor about treating his fatigue as a separate issue. If he doesn't have a medical oncologist yet this would be a good time to get one since a urologist will be out of his area and out of his depth.

There is a drug called "modafinil" that you might talk about. It is a stimulant, somewhat like ritalin, but more subtle in its effects and, I think safer. It is the newly generic version of the prescription drug "Provigil". It is used for "shift work disorder" where because of someone's work schedule he or she has to be awake at times of day where they are usually asleep. We have a number of guys here who use it to be able to work despite their HT-related fatigue. I tried it for a week but wound up switching to a less expensive drug. It worked well as far as I could tell in a week. I believe the price has dropped since then and the cost may no longer be prohibitive.

His doctor may also want to talk about antidepressants. While they don't treat the fatigue directly it is hard to struggle with the fatigue when you are depressed.

Good Luck. Keep us posted.
Posted 4/28/2014 10:00 PM (GMT 0)
According to what I've read there is no agreement on when is the best time to start ADT. Some say earlier is better and dime say waiting for symptoms is better because it delays the point at which the treatments become castrate resistant. Ironically some of these drugs are so new that not enough time has passed for clinical trials to generate conclusions.
You need to talk to your urologist,
Bob
Posted 4/28/2014 10:10 PM (GMT 0)
I had similar discussions with my uro. I can't see waiting until PCa is so advanced as to present symptoms before treating it. Mine was well advanced (and is now not easy to control), but never caused me any reason to suspect I had a problem.
Posted 4/28/2014 10:38 PM (GMT 0)
I've already started ADT but can say that when I told medical onco we would be away for more than a month, he was not concerned about me missing my monthly Xgeva for one month but said he would have been concerned if I had been due for my 4-month Lupron shot that month which I was not.

I seem to recall the subject previously but thought that as farmers you were considering starting ADT but delaying some other treatment (can't recall which) until after growing season, not delaying ADT itself.

PeterDA and I and others thought that would be okay but cautioned he should check with his uro/onco since we are not medical professionals.

Seems very risky to defer ADT til more symptoms. Perhaps he can at least do Casodex or Avodart to keep his PSA down, or perhaps Firmagon (degarelix) instead of Lupron, though not a great time to ask Peter about that since h just had the initial double dose shot to his stomach recently.

LupronJim
Posted 4/29/2014 2:47 AM (GMT 0)
Thanks all. We have an appointment tomorrow with the medonc and just wanted some additional thoughts to discuss with him. I would not like Frank to stop his ADT, but, it is ultimately not my decision. I'm sure doctor will encourage him to continue and, hopefully, address the fatigue. I will ask about the modanifil.
Lupron Jim, in a previous post, I was pondering Xofigo/Provenge earlier in the disease process as it seems logical to me. ;)

Lisa
Posted 4/29/2014 12:34 PM (GMT 0)
Lisa, yes when I eventually fail Lupron that combination of Provenge for immunotherapy and then the liquid smart bomb Xofigo to attack the bone mets would be pretty high on my list on next steps.

Think we would try Casodex or Avodart first and then maybe the Provenge/Xofigo if the second line ADT were not to succeed.

Hope his ADT becomes more tolerable. Perhaps the onco will stop the Lupron and keep the Casodex to control the PSA in your case til off season for farming.

Hope you are able to make contact with my buddy Clearwater Cowboy and his spouse Jeannie from another remote part of Idaho soon.

LupronJim
Posted 5/2/2014 11:01 AM (GMT 0)
Considerations for you to think about, without drug control, possible mets causing a lot of pain or limitations of normal working or worse yet fractures or debilations especially at risk bones of the spine, femur, and other areas. Or those same areas can be harboring mets already and get worse, sooner (sometimes not showing up on average scanning methods- aka micro mets). Thus, soon thereafter appearing on newer scans.

There are drugs that have lesser side effects or you may feel stronger or better on. Doc may not write the Rx for them is one issue. Drugs like DES, estrogen patches or gels or emcyt actually have less side effects in comparison, which is not widely mentioned. Even if you got patches you would need to take likely 3-6 of the .1 mg patches for effectiveness or 1-2 mg. of DES (along with warfarin to prevent clot possibilities). Probably not going to get an Rx for these anyway for a lot of reasons, some of them stupid reasons.

You might feel better on casodex vs. Lupron to some degree, and still get reasonable control for some time period. Good luck on whatever you end up doing.
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