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

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Posted 4/8/2015 6:55 AM (GMT 0)
Sue, I am so sorry to hear about the huge jump in PSA. Gary's rose to almost 400 this month and we were both freaked! The trial nurse said the rise is expected prior to the immune reaction kicking in. I would recommend getting the jevtana going asap. It may really get the psa under control. Praying for you!
Beth
Posted 4/8/2015 11:23 AM (GMT 0)
Beth, when I went through Provenge, another immune therapy, my PSA also jumped. Not like Gary's, but still worrisome . . . Q
Posted 4/8/2015 12:15 PM (GMT 0)
Sue,
Sending good thoughts your way and hoping you can get some answers, Sue. I know nothing of the frustration you've been going through and I can't imagine that level of stress. I admire your determination and not giving up on getting answers for Daves' care. Glad to see you and Dave will be going out for dinner to celebrate his birthday - a change of routine will be good for you both! Happy Birthday Dave!
Susan
Posted 4/8/2015 3:25 PM (GMT 0)
It is my understanding that anything that kills the cancer cell population that produces PSA may result in a rise in PSA due to the spilling of antigen as the cells disintegrate.
Posted 4/8/2015 5:13 PM (GMT 0)
Yes I have read that killing of PC cells can increase the psa# I think I read that Psa testing counts dead cells as well as living. Boy I sure hope Dave has 2,800 dead cells! Down for his nap early today and will go out for dinner in honour of his birthday. I totally agree with all your support from a patient veiw point on pallitive care. Just how do they think someone who is usully napping for at least 3 hrs a day can handle waiting for an appointment that long.?
I was steering those appointments to every 2 months but of course they want the next 1 in 6 weeks. . This time if we don't see the Dr in what I consider a timely fashion I will pull Dave out of there. He can if wants after that phone us.This Friday is bloodwork and oncologist apt and somehow theese appointment times are way better done. We will be out of there by 11:30 .
Home care tomorrow and I have gotten their appt put to the am 8 am is fine by me. Today they moved his xofigio shot to 2pm and the Dr part of the appointment to 2:45 if we are not seen by him in a half hour we will leave as I am not getting stuck in rush hour traffic and even at that time it will be the time for rush hour! Perfect apt for us would be 11 am and I will suggest that time for the last one. They drive me crazy! ,
Posted 4/8/2015 5:34 PM (GMT 0)
It's the PSA level, not the number of dead cells. I am sure he has one heck of a lot more dead cells as a result of Xofigo and I hope they are all spewing out antigens like chimney stacks. I am getting worked up just reading about your driving, Sue. It's not right. Please give Dave an extra hug form all the people here who care about his well being and, again, Happy Birthday Dave!
Posted 4/8/2015 5:38 PM (GMT 0)
If you've the energy, tell the scheduling admin you enjoy making cookies in the morning and gifting them when they're hot. You could bring some to an 11:00AM appt. I've used that tactic to get the times I prefer (I make bread - that works too).

Wilderness
Posted 4/9/2015 7:08 AM (GMT 0)
Happy Birthday Dave! I hope you had a great dinner. My birthday wish for you is an effective treatment. Gary is planning on a huge drop in PSA next test and you need to keep up (or down, as this case may be)!
Beth n Gary
Posted 4/9/2015 11:09 AM (GMT 0)
Thanks every one for birthday wishes for Dave . It was a nice dinner out. The breathlessness continues and used handi cap parking sticker for the first time. I usually prefer to let Dave off at the door and then park the car. Less walking and not as cold for him either. Just walking to the car last night from the restaurant took over 10 minutes to recover breathing! That is very scary !
Today we have home care .Tomorrow we will see what the oncologist has to say. I think yet again I will ask what the treatment plan is? Beth I hope for a PSA drop but the way the # went last week I predict psa of 2,975. I especially like it when we get told anything over 10 is just a number? What would they really think if it was their # once again thanks everyone 💐
Posted 4/9/2015 5:53 PM (GMT 0)
Hi Sue,
You are so right about your MOs reaction to Daves PSA rise, anything over a ten is just a number indeed. I just got back from seeing my MO and she told me that my PSA had risen from 122 to 160 and she was all concerned. As I'm also undergoing Xofigo she wants me to ask my RO about it, to find out more about when and if the PSA will show a drop rather than a spike. After the first injection I dropped 14 points and we were expecting to see a similar drop or better. I love my MO . . . Q
Posted 4/9/2015 7:33 PM (GMT 0)
Well, Don is feeling ill today and is very weak. His DpD Crosslinks test is flagged at 9.9 so I am not sure if the Xgeva and Xofigo are doing the trick. I just sent the results to Drs. Strum and Myers for their input. I think Myers must be away as I sent him some test results eight days ago and have not heard a thing. Unless I am missing something, I thought the denosumab would help arrest bone breakdown pretty quickly. I also think the Xofigo is affecting his RBCs as he is so weak today he can barely stand. Of course, yesterday, he was busy repairing plumbing and what-not so maybe he's just having another one of those catch-up days. I'm just organizing as many NE disease tests as I can through LEF, which has been a godsend to us. UPDATE: I think this whole weakness thing is related to blood sugar. He had a sandwich at his favourite restaurant and came bounding out ready to take the dogs for a walk. He's on metformin so maybe this is playing a role.
Posted 4/10/2015 9:56 PM (GMT 0)
Don is way better today and his usual self. HOWEVER, we got his blood results and they are beyond disappointing. It seems the Xofigo is not working either (does anything?). His ALP is up from 675 to 687 and the LDH up from 1041 to 1375. PSA was not measured but had doubled in three weeks. Not sure what to do but think we'll spring for the choline PET scan down in California to see exactly where this activity is strongest. It is very frustrating. I can understand the PSA going up but not the ALP and LDH.
Posted 4/11/2015 2:23 AM (GMT 0)
Well you were not alone for disappointing bloodwork. Dave has a platelet count of 66 so to low for round 5 of xofigio. Hemoglobin dropped a bit to 85 .Psa thank heavens has dropped to 2,410. Then I remembered when I got home the reasons for the 505 increase was due to the manipulation of the prostate from having the urethascope ! The pet scan is supposed to be so much better . Dave has bloodwork on Tuesday again as well as ECG for Wednesday. The breathlessness continues to be the biggest problem. He really can not do anything at all. The oncologist thinks in 2 weeks the bloodwork should allow going ahead with round 5. Dave does seem tonbe getting pain control from having the xofigio. How about Don does he think he feels in any way better? You are so lucky he can still do things ! Dave is just wipped and even said he just can't. I will reply to the email you sent at some point this weekend. Take Care
Posted 4/11/2015 2:31 AM (GMT 0)
Moonlitnight,
Sorry to see the test results were so disappointing - that's tough to take when you're hoping for any good/better news. The results you mention - ALP and LDH - are biomarkers? So the choline PET scan would show why those numbers are so high, right? That sounds like a good idea - do you need a recommend from your doc to have that done? Hope I'm not being too nosy...just always trying to see what we're up against with this randomly crazy cancer! I'm not a technical person, I seem to have difficulty in absorbing all the data...I do try but I have to say after a while, it starts to look like the algebra classes I took and failed! You and Sue have a pretty good grip on it...apparently more than some of the "professionals" you've had to deal with.

All the Best,
Susan
Posted 4/11/2015 8:12 AM (GMT 0)
Sue,
It sounds like we are both in and out of the clinics too many times a month. With each 100 mile round trip I just get banged around and fatigued not to mention my disabled wife having to do the driving, poor thing. I saw my RO and got him to let me use the blood lab, same Tri-Core Company, at our local hospital this next time but as he needs the work STAT it will be putting a strain on the system. I sure hope that it works as just saving one drive out of 8 would be a big help.

Sorry to here about the platelet counts and am hoping that they do go down for Tx5. After tx2 I broke out in over a 100 itchy bumps that resembled spider bites. My MO says that is a common reaction to radiation. I've scratched myself raw and the bites are all over my body, Yuck . . . Q
Posted 4/11/2015 11:57 AM (GMT 0)
Quincy that is a pretty bad reaction to the xofigio. Did the Dr recommend a anti histamine before the next injection for you. Make sure you tell them at the place were you are getting the xofigo. From the data I have read I do not think that is a common reaction. Yes I so know how you feel with driving! Dave still is able to drive so he does on the way there until we hit the coffee spot and then I take over. I did get a handi cap sticker so we can park closer to any doors we may need to acess. Just getting out of the car finishes him so that may come in handy
We have the bloodwork and oncologist apt in Kingston the Friday before xofigio then the results are sent to Toronto on Fri afternoon so they have them for the xofigio on Tuesday. I am happy for you that Connie can drive , I do not know what people do who have no way of getting to appointments. Have a good weekend.
Sue
Posted 4/11/2015 2:03 PM (GMT 0)
Hi Sue,
I'm getting an Rx for Benadryl before the next injection, hope that stops the itchy bumps. We have been debating a handicap sticker but are still just thinking about it as my fatigue is not nearly likeDaves. I would like to wait till I am in his sort of condition, as it is now I just haveC drop me off at the door because she says she likestheextra exercise. Enjoy your weekend as well . . . Q
Posted 4/11/2015 2:40 PM (GMT 0)
Susan, yes, these are biomarkers of bone breakdown and cancer spread. ALP (bone specific variety) is alkaline phosphatase. Don's was up this month despite dropping slightly last month. However, he is on prednisone 5mg bid, and this can cause a slight rise. He started the pres two weeks ago. The LDH is lactate dehydrogenase and it is crazy high. It can represent cellular damage so I am hoping that this and the doubling PSA is due to cancer cell lysis, although this is a big hope! That reminds me, I should check to see if the uric acid and K are also elevated, which would support that theory. We have emailed Dr. Myers (I think he must be away somewhere as we haven't heard a bean for two weeks). Dr. Barken is onto it of course and we will be discussing it with him today. Re the PET scan, I really don't know how it works in the US with insurers. We would have to pay out of pocket. Our house will be going on the market in a couple of months so that we can find a smaller one and pay for all these tests and treatments. That might include the prostate being removed...we shall see. Dr. Strum has just got back to us on the bone breakdown issue. Wants Don to have a higher Xgeva dose I think so I will check this and let everyone know. His DpD test was 9.9 - way too high.

Sue, Dave and Quincy, Connie, have a good weekend as well.

Post Edited (Moonlitnight) : 4/11/2015 11:30:56 AM (GMT-6)

Posted 4/11/2015 3:41 PM (GMT 0)
Moonlit:

I would suggest calling Myers' office on Monday.

Sorry to keep reading about Don's (and yours) struggles.

Mel
Posted 4/11/2015 4:15 PM (GMT 0)
Hi Mel, I said to Don yesterday that I will email you regarding Snuffy as it is unlike him to just not respond. I uploaded six labs and asked a couple of minor questions.

Our struggles are mainly of frustration, as are poor Sue's. No one seems to have any desire to manage anything and, while I believe that the head of one's team is oneself and/or spouse, it would be nice to not have to look every study up myself and then present it to whatever doctor IS available up here only to hear, "I've not heard of that," "I learn a lot from my patients," or "I don't agree" (conversation coming to a dead halt). We have a kind and very well informed retired US PCa doctor coaching us now. It really helps enormously to know he is there and actually rooting for Don, which he makes very clear. In this sense we are blessed. I just wish for the same for Sue, whose struggles are far worse.
Posted 4/11/2015 6:57 PM (GMT 0)
That is such a tough situation. Incidentally, Snuffy is not my doctor; Dr. Lam is.

I have heard that there are huge issues with Snuffy's office and, in general, slow or non-existent responses.

One of the reasons I chose Lam pertained to how impressed I was with his office staff.

Nevertheless, Snuffy certainly appears to be a world class medico, so you got that going for you!

You know, we may not want to admit it, but I bet most of us shudder when we read of these situations, since we can see ourselves in comparable situations.

Mel
Posted 4/11/2015 8:32 PM (GMT 0)
Mel, sorry, it's Jerry who sees Dr. Myers. My bad. I am getting so confused with doctors lately. There are so many of them (too many perhaps) that we consult with. I always hope that TWO of the five will share an opinion but that is never the case. Now, I hear that Xofigo is not at all helpful in Don's situation (which seems to be borne out by his numbers) yet Dr. Myers, our general onc (Canadian) and one other say it is a good one to be on. I'd like to say, "I give up!" but I can't.
Posted 4/14/2015 10:25 AM (GMT 0)
I subscribe to urology today and they just did a case study of the radium on 25 men and alot never did get 6/6 treatments. Some only had1 or 2 treatments. It is supposed to be easily tolerable but like any thing else will probably take years of study to really know if its that good or not. I still think it is all in how the treatments are sequensed is the most important factor. I still keep thinking that we should have a treatment plan !! Today is bloodwork for Dave to see if the platelets have come up .Tomorrow ECG. To add to the mix one eye is having problems and will need to go back to the orthamologist as there could be something wrong with lense implant. Totally breathless yesterday and he wanted to cut the grass down and do spring clean up .Couldn't! ,
I did 3/4 of it and spent 6 hours at it ,10 wheelbarrows and grass catcher bags just heaping full. BUT hired yard service for 1 day a week. Should free up time for us and work. Great Day for you all ...sun and warm here again!!
Posted 4/14/2015 10:40 AM (GMT 0)
Quincy thank heavens you got the prescription. I know what you are saying about the handi cap sticker but it may come in handy . We never dreamed that we would ever need one either. Here it doesn't cost us anything just the Dr needed to put his signature on it. This one is good for 5 years. You and Dave may yet end up on the same week for the xofigio.
Hope all is well for you and Connie Take Care Sue
Posted 4/14/2015 11:29 AM (GMT 0)
Sue, I hope that Dave finishes Xofigo before me, you deserve a break. Thanks for the tip on the Benadryl! I was absolutely raw from scratching and still have a few left on me waistband. It looks like it's going to work out getting my blood draws up here as they got the necessary blood counts into the computer system by noon yesterday. If I would have done as previously scheduled I would have been driving down to Santa Fe at 8:00 this AM and getting back at 11:00. This works out better all the way around.

Our local cancer clinic is going digital! This means that I'll be able to access my records, blood counts, Drs' comments and everything else on my own private portal. Of course there will be a few glitches at first but the availability of all that on just my iPad will be marvelous. I hope that you had a good weekend, we pretty much relaxed but did manage a short walk . . . Q
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