New Member "sue saddened wife" : PSA rising (3005) after two tx xofigio. What's next?

Xofigio #4 done. Pateint is resting. No side affects! , BUT we have urinary problems that are getting to the point of extreme worry. Urgency , dribbles, or a rush and pain during! Bad news urologist is of course away on holidays till Mon. Hoping urinary retention doesn't happen. We had thought we were so past this problem with laser green light turp he had last May. Last night he was up 2 times and while it seems like not lots thats just how prostate problems began before. I can only imagine it would feel like a womens urinary tract infection. I know we cannot do 6 hrs at emergency again!! Not in Trenton , if I have to take him In we will drive the 87 kms to the better hospital.
Any how just 2 more injections left !!

Update and a question for those who have been on Xofigo: Don had mild pain in the small of his back before Xofigo. This was managed with two Advils a day. It felt worse after the first shot and or naturopath suggested this was due to swelling. Today, after Don's second shot, the pain was much worse. Has anyone else experienced this?

Hi Dave never had any pain either . I don't know what would cause it? When do you do a follow up with the oncologist? I would for sure mention that pain!

Moonlit,
I just remembered something that my MO told me to watch for, it was a compression fracture of the spine where it joins the sacrum. I'm not sure how much density your husbands bones have lost from HT, I've been on Lupron for 8 years and I am susceptible to such fractures. Have you done a bone density check? . . . Q

Glad I remebered that bit of info. I've had 3 BD checks and the third one showed thatmy spine is really on the way to osteoporosis so we are going to do another density check after the Xofigo. Best wishes . . . Q

I've no idea on what they would do, Moonlit. My wife is having this stuff called Synvisc injected into her knees, maybe something along the lines of what you mentioned. It is ridiculouse that so much of this due diligence is left up to us. I'm fortunate that our smallish town, 65,000 people, has such agoodcancer center. I've been walked through all of the phases of my treatment and except for my first MO, I've been very happy with my Drs. and PRNs . . . Q

That's great news Sue! I agree that your previous Dr. Needs a talking to. I will be reading all of your posts on Jetvana as that is most likely down the line for me. I wonder just what that Dr. Meant by saying that he was doing Dave's Xofigo as a favor, he sure couldnt mean he was funding it. My RO said that it was $15,000 per injection. . . Q

Sue, glad you got the OK for Jevtana! I am with Quincy in terms of what the heck did the doc mean by giving the Xofigo as a favour?

Hi Beth:
I know Dave wants to finish the xofigio to #6 and then you have to wait a full 4 weeks beforr starting the jevtana . I think the start of it would be around the middle of June. .How many jevtana treatments did Gary have? What about side affects? I feel bad for people over in England as they are not even letting people have the jevtana any more because of its costs. The costs of drugs and treatments just should not be any thing you should ever have tonworry about with a cancer diagnosis. They are supposed to be looking at bringing in a national drug plan in Canada. Of course there will be some sort of catch to as is there really anything thats free? Some of the expensive drugs will probably be taken away and they will probably cap it some how. I was just pricing out Blue Cross and for 60 a month it would give me semi private hospital coverage and a drug plan that caps at 5,000 for the year and only covers 80% each prescription. Last year alone Daves drugs were over 30,000 .So not sure about paying 720 a year for that. At 65 drugs are covered that is Dave next year. I still have a 5 yr wait. For years from Daves work we had all that coverage but going forward with what he had was 585 a month and even though Dave had worked there for 37 years our mill pension took a huge hit as Dave was just 55. Right now because of home care the drugs are covered (Thanks for that!) All of here can relate in some way to the cost of having cancer and its not all about the money. Stress and worry have no price tags but what its doing to us probably really wrecking our Inards.
Xtandi was bad for Dave he was so fatigued and loss of appetite was huge and it just didn't help one little bit .He was only on it 2 months and that was harder on him than what the chemo was. We did get that drug as our 1 time covered choice.The choice being zytiga with prednisone, jevtana, ot the xtandi. Why the patient is the one who picks it I will never know. The oncologist should be the one who looks at whats going on and says out of the 3 take this one. I didn't even know how to evaluate whats going on by blood work but I am starting to know now. Crazy isn't it the things we are learning out of nessity.

We saw a very well respected oncologist today (the oncology wing of the local hospital is named after him). He consults now but was beloved by all when he worked full time. We wanted a fifth opinion. Our oncological naturopath had suggested Don not have degarelix for a few months, since it evidently isn't working and we have to consider his heart/fatigue/ability to exercise/general well being. This fellow has over 100 PCa patients and several who are G8-9s. I knew this was controversial since Don's PSA is over 60. The oncologist said he saw no problem at all with this, that he was aware that most prostate cancer specialists would keep the ADT running, but that his clinical experience showed no difference in survival if androgen resistance had taken place. I said I was not sure what that means for the percentage of cells that are still androgen sensitive, but he said the Ra 223 would take care of those. (I had so many questions, and a migraine, and it didn't occur to me to ask about the actual prostate, which isn't being addressed with the Ra 223. Don would like to have it removed but no one will do this.) The consulting onc also advised that denosumab does have anti-neoplastic effects—something I thought it did, but was "corrected" by our regular oncologist. He felt that the Ra 223 was the best route, since the cancer appears confined to the bones, and ordered a bone density test (thanks Quincy). He said that chemo was the best route for "younger fellows" who usually have more aggressive forms of cancer with rapidly multiplying cells, but that he would have chosen radium 223 before any form of chemo for "youing fellow" Don. Now we have a lot to think about. Don is feeling very good and is whistling away upstairs while doing the bathroom reno. Last week, he could barely get around. Both our Ra onc and the naturopath say the most important thing is, is he feeling good? I am sure others would say the most important thing is, what is his PSA? That is what is so confusing about this disease. There are studies that suggest one thing and clinical experience that suggests quite another.
On another note, Don was on his way to get a DpD test in Bellingham and ended up in US Border Control when he set off a Geiger counter. So he never got to the lab. He'd forgotten his letter advising he was having Ra treatment. Poor guy!

Hi Sue, I hope Dave is able to see his xofigo tx through. Gary responded very well to the jevtana after the medonc got his vascular reaction under control. I think he had 12 or 13 txs before his psa took another climb. I wish I had found HW sooner and had gotten more informed prior to treatment. While Gary had standard care, it would have been nice to look at options. I am very interest ED to see what the long term outcome is for those who treat aggressive cancer with aggressive treatment. Gary's onc was of the opinion that if you use up the arsenal you have nothing left to use later. However, I have seen guys with G 9 get the mets kicked back enough to have RALP. But sometimes it fails and the cancer reoccurs. Shaba D is having good outcomes with his orchiectomy. At least we weren't told to pick one of three options!
I'm gonna start a thread looking for chatters tomorrow. Hang in there my friends!

Hi Everyone
I totally agree about the going through treatments so fast that there is nothing later on. The one thing I did find that was very interesting in the sequencing of drugs was that in a lot of cases Jevtana would have a better sucess rate of killing cancer cells even though its a taxen just like docetaxel. They always make you do docetaxel first and In Daves case that wasted 6 months. I am going to make sure the oncologist gives this every 3 weeks as for some strange reason Dave only got the docetaxel every 4 weeks and I always wondered if that was part of its failure.They have to use the knowledge that they have so they are giving the treatments geared to actual cell and proteins that vary In all of PC patients. I am glad to know Beth that Gary did the jevtana for the full 12 months before needing to move on.

Jevtana is ""Supposed "" To be covered in BC as it was in Ontario. If you need to go to this find out before you need it because for us we had to get approval for it .Very expensive at 8,500 plus usually nuelasta injections at 3,500 and that is why they put ""Standard of Care with Doxetaxel first" as it is much cheaper!!" As soon as we have oncologist apt I want him to outline Daves treatment plan. We literally have no direction with this and you feel like you are riding it month by month never knowing if what you are doing is working, helping or a waste of months. To me now a waste of months is equalling a wasted opportunity to slow this down and with out a clear cut plan I just think they are in a sense throwing us to the curb