???need some advice

Just returned home from Onco. January appt. husband PSA has risen AGAIN... They started him on Casodex first of December. See signature for pattern. He has been having twinges of pain in pelvic region and flanks of his back. (He secretly was hoping it was the Tumors shrinking), but when Dr. Gave us results here needless to say was disappointed. In Dec. with the rise on going w/ADT dr. Felt he was showing early signs of resistance . That's why they started Casodex. PSA when up another 11pts. In 4 weeks.(PSA 1/16/13 =34!! Dr. Said stop Casodex, now prescribing Zytiga/prednisone. I just don't know if we are being aggressive enough? Husband went into this thinking he can treat this naturally and with alternative methods. Dr. Did tell him in Dec. that he should start thinking about Taxetore. I think if the Zytiga does not work he may not have a choice. My concern that if we keep "top toeing" around our window of opportunity for spreading to bones in out of control. To top it off on our 4 hr. Drive home from Houston he mentioned to me that he felt a weird "lump" up by his neck.?? Hmm, I said your just noticing this? Yea, weird. So we get home and he points it out. Yep, large (about the size of walnut) up by his left clavicle. It's hard and fixed. (Why could we not have noticed this before his appt and coming home??? Anyone experience a lump up there? Googling it sounds like lymph node, but unusual for prostate to travel up there. Usually breast or lung cancers. Should we contact the dr.? Also, the only dr. He sees is at MDAnderson his Onco. Should he have a Dr. Locally? GP or someone else following him. He had never had any health issues prior to diagnoses in June2013 with routine physical? Really scared with how this is progressing so fast. I know so many of you have been through this for a long time and have seen a lot. Advice and prayers please. :

Barb,

Has any scan recently picked anything up? Where were the spots if so?

Has he had any radiation?

Jerry

Just my 2 cents, but I have a local urologist, medical oncologist, and a radiation oncologist. But, I get most of my guidance from my other medical oncologist, Dr. Myers in Charlottesville, Virginia. I see him twice a year, but email him all the time.

No radiation?

Oncologist needs to know about the " node". With rapid hormone resistance and spread , did Oncologist think this could be "small cell " PCa ?; and if so probably would need chemotherapy. With extensive lymphadenopathy , a C11 Pet scan would probably just confirm what they already know. Since the "node" is palpable , they may want to biopsy it to confirm whether PCa is spreading to more distant sites. He needs to work with a good oncologist and MD Anderson is known to be very good for cancer treatment. A local oncologist (not Urologist) can work with the doctors at MD Anderson also. If he does not have a local medical oncologist, I suspect he would benefit from getting one . This is my opinion and not medical advice.

If I am reading his signature correctly, he just recently started Casodex. I've read of several cases where Casodex caused a spike in PSA. In some cases, it was a very temporary spike and the PSA resumed a downward turn. In other cases, they had to be removed from Casodex altogether.

Also, the scans that "showed "slight" reduction in primary tumor in prostate, however significant residual disease remains" where done after a relatively short period of Degarelix. I'm surprised he wasn't put on Casadex during the same time period. Degarelix usually doesn't create a testosterone flare and can be given on its own. However, in my husband's case, it was used initially to stop the testosterone and prevent any flare and he was given casodex a week later, followed by a Lurpon injection.

It's my understanding that Degarelix stop testosterone from being produced by the testes. Casodex and/or Zytiga block other glands in the body from producing it. Someone can correct me if I am mistaken.

My husband is on Lurpon, Casodex, and Zytiga. So far, we can't argue with the results.

Everybody needs a GP (family doctor), even more so when the oncologist or urologist is distant. Mine is the the focal point - he keeps up with my meds, and has a picture that helps him know when / what vaccinations I should be getting, if they are compatible with the other treatments, and he gets the job of dealing with a lot of the little side issues that the uro does not address.

My insurance won't pay Zytiga until I become refractory (stop responding to Lupron).

SpecialLady, that's just what the Onco said via email on Monday. Does not seem to be too concerned. Zytiga was approved and on its way. He seems to think if lump is related it should take care of it.
We will return to MD Anderson mid Feb. For another shot and PSA. Hope to see good results as well as MsWorryWorts husband. It's been hard to keep him positive. We have talked about second opinions. My concern is getting confused if we do that. I know we are at one of the best. But, seems taking a pill is too soft on this crappy cancer. I suppose we should be grateful he has not had any treatments that resulted in negative life changing side effects. Quality of life is so important. But I want him here a long time too. Sorry for the babble... Thank you everyone for your advice. I find much relief that I can go here and read success stories and others journeys.