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

Quincy the digital charts are the best!! Sunnybrook where Dave goes for xofigio has that and it is amazing. We can pull up all the letters the Drs send to each other as well a bloodwork but only if it is done at their labs. Appointments are on there as well...you will love it!! Glad the benadryl helps. That is a horrible reaction. Dave does take 10 days of dexamethasone 4mlg daily after xofigio. The palliative Dr arranged that I think .
Today was a lazy day and hoping to get something done after supper . Had a eye apt for Dave on short notice as he was getting alot of those floaters and I was worried about a retina detach but he is ok. Last year as well was double cateract surgery. Orthamologist said cancer can worsen cateracts. Before we know it , the weekend again. Running for appointments means there really are not many free weeks! Have a good one!

I'm really looking forward to the digital, especially the Dr. chats. My ophthalmologist said the same thing about my increase in floaters but that I really didn't need to worry about it. You know, ever since I switched from a big monitor to this iPad the eyes are a lot more comfortable. The floaters are a lot less noticeable too . . . Q

Myman, we just returned from MDAnderson in Houston. They have recommended my husband for the trial with anti PDL-1 immunotherapy. We are still trying to get our arms around it. First they have to test samples to make sure he carries the PDL-1 virus before you qualify for the trial. If he does, it will be an interesting nous ion every two weeks. They have tried it in some advanced Prostate Cancer patients and looking promising. The test to see if you qualifies takes about 4weeks.
He has been on 3 mo. lupron, zytiga with 5mg prednisone and Xtandi.
With this his PSA has continue to rise
Latest last week 7.2, March 5.1, February4. January2.7

barb I, thisTx sounds like a slightly more advanced form of the Tx Provenge which I went through during 09/15-10/17. At the end of the Tx my PSA was 4.7, Now almost 18 months later it's at 160. Draw your own conclusions. . . . Q

PS: in Provenge the addition of a new "end" to the T cell looks identical to that used in anti PDL-1 Immunology. That is what got me wondering. Also, 18 months is the median survivability rate for Provenge so perhaps I should feel luck. But for a treatment that cost me $107,000 a PSA end score of 160 is not what I was looking for.

Quincy, I'm sorry to hear about your PsA climbing. I know we are all hoping and praying that each treatment we are offered is going to be the one that will work on our cancer. Each one of us is different and I pray you are able to find what will work for yours. If he test positive for the PDL-1 and approved for the trial the treatment is covered by the trial. We are doing our research as to what it actually consists of and risks. As it is a Phase 1 trial. There are some other trials they discussed and testing also. Interesting ones with high doses of infused Co-Q-10.
Also Testing for mutations to see if there is a"targeted" therapy from other cancer mutations that may work on his.
I guess they have run out of "standard" prostate medications. We are going to get 2nd and 3rd. opinions from his other Oncologist we see.

I will post on what path we proceed with.

Barb 1,
I agree that we all react differently, please don't let my dissatisfaction with provenge throw you off your present trail. These immunotherapys are so different In such a small way that a sneeze can make all the difference, and I don't mean a contagious sneeze either. Best of luck with what looks likes a well run trial . . . Q

Post Edited (quincy17) : 4/16/2015 8:05:25 AM (GMT-6)

Sue,
Good morning. I bet you slept well after all that yard work yesterday. I find working in my yard very good for my mental health and comforting for my soul. My hubby can't mow our lawn anymore either, just too exhausting for him, so I did the first mow end of last week. And proceeded to break the pull-down handle that engages the blade. If it's not one thing, it's another....at least I was almost finished with the mowing! and could get to the aerating and reseeding. It sounds like you must have a most beautiful piece of property, I hope you and Dave can sit back and enjoy as the weather gets better and better. All the flowering trees are in bloom here and the daffodils, forsythia, hellebore and flowering cranberry and plum bushes. Spring is my husband's favorite season and we're having a spectacular one.
Also, I think I read yesterday that the drug you mentioned, and I am not going to try to spell, has been discontinued in trial for lack of efficacy. Maybe someone else can remember more or correct me if not accurate?

Always keeping you both in my thoughts. Lisa

Susan,

We are on a FB page together as well, from what I have been told from our doctors at MD Anderson is that the PSA rise in only alarming if the Alkaline levels rise as well. That we too can expect to see a rise, which I am saddened about since we just went down to 0.6 prior to his 1st injection. The Nuclear Medicine Doctor told me that when the Radium hits the mets, they crumble and when they crumble the PSA releases that is what causes the spike. Is your hubby also taking Zytiga at the same time? My husband is and they have had great results with combining both meds, so my fingers are crossed...

Age 43
PSA 763 9/12/2014
Bone Scan 9/19/2019 Showed mets in shoulders, bilaterials ribs, thoracic and lumbar spine, lower left base of skull.
Biopsy 9/23/2014 Gleason score of 8
Casodex-9/23/2014 for 30 days
Lupron Injection 10/7/2014
PSA 787 10/11/2014
10/16/2014- Extensive scans at Md Anderson showed nodules on lungs as well
10/21/2014- 1st round of chemo Docetaxel (Taxotere)
11/5/2014- PSA 53
11/11/2014 2nd round of chemo Docetaxel (Taxotere
11/11/2014- PSA 32
12/2/2014- 3rd Round of Chemo Docetaxel (Taxotere)
12/2/2014-PSA 13.5
12/23/2014 4th Round of Chemo (Docetaxel Taxotere)
12/23/2014- PSA 14.5
01/13/2015- 5th Round of Chemo (Docetaxel Taxotere)
01/13/2015- PSA 14.4
02/03/2015- 6th Round of Chemo (Docetaxel Taxotere)
02/03/2015- PSA 8.8
03/03/2015- PSA 10.9 Crossed over to Castrate Resistant
03/10/2015- PSA 9.9- Started Zytiga
03/10/2015- Whole Body Bone Scans- Showed HUGE Improvement from scans in October 2014
04/13/2015- PSA 0.6
04/13/2015- 1st Radium 223 Injection
04/14/2015- 2nd Lupron Injection

Moon, So sorry to hear of Don's problems. That can wear a person out quick. Will he take a look at something on line? I believe ChemoCare.com can give you a good def of palliative care that Don will accept. Now that doctor is clueless and he may be a fine doctor but he has no sense about how to treat his patients. He burns my biscuits! Am hoping things settle down soon for you both.

Sue, Keeping hope that Dave gets the ok to move ahead in his treatment. My husband had provenge and though I can't give you an identifier to point to that says its working we do believe its been beneficial yet I do agree that using it earlier rather than later would be best.

Lisa, I hope the chemo is going well for your husband. I don't see from your sig he's still on it and how is he doing.? My husband responded well but did have to stop at 5 cycles. You and Sue need to start a landscaping company!

klc456, I so hope your husband progresses on this trial. I see that Tall Allen spoke favorably of it and that says a lot to me. Will be keeping a watch out for your posts.

Quincy, Just had cycle 2 of Jevtana and this is not easy. Constipation is a huge issue for him. HUGE.
I can discuss more tomorrow (although that doesn't sound too interesting now that I re-read what I wrote) but need sleep soon.

Barb - You are another pro active wife and I wish you the best on your search.

Sal & Ted and all, I think of you and hold you close.

Susan

2005 Husband dx at 63 yo Gleason 4+3
2006 LRP First post surgery PSA 11.8 Stage IV Start Lupron
2010-2014 Casodex, Provenge, Nilandron, Zytiga, Orchiectomy, Xtandi.
PSA cont rise. Spot on spine & enlarged lymph nodes.
2014 Xgeva & Taxotare
10/31/2014 Last Taxotare due to SE’s PSA was 14.82 now 1.3
2/27/15 PSA 10.48
3/20/15 PSA 13.68 Multiple lesions found in liver
3/27/15 Start Jevtana w prednisone Neulasta 24 hrs after chemo
4/17/15 2nd cycle

Quincy...will keep Don drinking water, thanks for that tip. He does drink about eight glasses a day but I'll make sure he ups it.

Susan, thank you. I did actually give Don the correct definition of palliative care. I read it to him but this doctor really blew it in my opinion. Would two 60-somethings go to a palliative care doctor for help with a will? I think not. Love the expression "burn my biscuits" :)

Kik, those are EXCELLENT results. Don won't consider chemo and certainly wouldn't be strong enough for it at the moment.

Lisa, your garden sounds so lovely... Best to all.

So very sorry to hear how much trouble Don has had. We have been there with the diarrhea and it sure does dehydrate a person fast. We always have Dave on gateraid now. Right now his apetite is wanning again and I get in trouble for putting to much food on his plate . So what I dish up is exactly portion size that he would normally eat.
How many treatments are in the Dribbles study? If the psa doesn't drop could the vaccine be cumulative and do more for Gary when its done.? Glad he feels like traveling. I hope I can get Dave to that point this summer as I want to go visit family back home. It is nice to get away a pretend all this has gone away!
Well a girl can dream !! Bloodwork is still a no go for xofigio so platelets are still at 55 and hemaglobin is at 74 and that never changed I bit in 3 days inbetween blood draws. If he keeps getting blood draws they will have to give him another transfusion just to replace whats taken out. I don't know all the bloodwork details as medical oncologist talks fast and I never get to ask questions when he phones here . I will phone and get his secretary to give me the alp # . Quincy are you getting the xofigo this week? Well going on 8 am time to get Dave up . Have a great day everyone (((HUGS)))) Sue

Thanks for the kudos about the garden...it's always been a complete love of mine to get outside and muck around. We had a very mild winter so things are ahead of our more typical spring season. I'm even wearing
shorts every day which is perfect.

Moon, I'm so sorry to read about Don's SE's with the radium 223. You're so right about how hard it is to watch
a loved one feel so ill. What is especially upsetting for me is watching Frank's face change, so much frailer and more vulnerable looking than ever before. He's completed 5 cycles of taxotere and will do last cycle in 10 days.
PSA has continued to climb but he feels the chemo is keeping things more controlled than otherwise. He will get new scans after he finishes the chemo before we decide on next course of action. Frank had a tooth break off at the gumline two weeks ago so has stopped further infusions of zometa so we can take care of that...involves oral surgeon as regular dentist is leery of doing the work because of the risk of osteonecrosis of the jaw. Prostate cancer and its treatments are the gift that keeps on giving

So, all you wonderful people, thanks for caring. I can always count on you all and know I always am thinking about everyone here. You know how it is, my work load has increased tremendously as Frank's abilities have waned. I don't post that often but I am here in spirit walking with you. Love to everyone. Lisa and Frank

Beth, thank you for sharing the Xofigo experience. I thought it might just be Don experiencing this awful diarrhea. I cannot understand why all the drama over getting him admitted into hospital for the diarrhea yet not one comment or concern about the low haemoglobin when I asked about it. This is really good about the DRibbles!

Sue, thanks for the food advice. I had to force a shake (loaded with electrolytes) down him yesterday. Two years ago, my sweetheart was 250 pounds of muscle and laughed a lot. Now he is 150 and looks so sad all the time. Worse, when he catches me looking at him, he puts on a fake smile that breaks my heart. I hope Dave's ALP has gone down. Don's has risen. It keeps rising, along with everything else except his spirits. The Mayo visit for the CT-11 scan is off. All told, it came to over $19,500 with accommodations and flight. The docs here are not that interested in scans as they say they "wouldn't affect the treatment we give him."

Quincy, those itchy bumps sound awful...enjoy the mini-wheats.

Lisa, "Prostate cancer and its treatments are the gift that keeps on giving ." Yup... just awful and I am not at all confident that they are any better than going it alone, as a buddy of ours with Stage 4 breast cancer did over 25 years ago. She just said "***** that" went vegan, exercised herself into oblivion and it vanished from her brain and lungs and wherever else it was lurking. We had two oncologists tell us that going off all androgen blocking treatment would be just fine. Don did that for a week then we both looked at each other and said no. Fear I guess.

When Don was first diagnosed, we saw a certain "top urologist" and got into a fight with him. He was arrogant, obnoxious and a know-it-all whose ideas and ideology failed to synch with ours. At the end of this month, we are going back to see him. We know a G10 with mets who is doing very well as his patient, but wasn't at the hands of the team that we now have. He did a CTC DNA test on this man. I am expecting that all he will say to Don is to go on chemo, but I am praying for something more creative. Dr. Barken, however, told us of a patient of his who did terribly on ADT. The SEs made it impossible for him, so he went on Tax and sailed through it and has done very well. I think it was used earlier on in the game though.

Susan (Myman) wishing you, and all here, a lovely day. I am reading an exceptionally well researched book on collective consciousness and healing. My consciousness is shared with yours and rooting for you all. xx Moon