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

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Posted 2/18/2015 12:54 AM (GMT 0)
Pink Floyd??? I am green with envy. My favourite group ever. I will work Dave into my healing practice tonight. I had a long one with Don yesterday. Today, he got up and decided to go for a long walk, and felt very much better. He wondered if it was the Dexa but I don't think it would work in a couple of hours. He said he felt better than he has in days. I find though that the Xgeva fatigue SEs come and go in waves.

I hear you about all the packing. We went to Point no Point on Vancouver Island at the end of January and we looked like we were going away for a year instead of six days. Worse, I had to trek it all down to the cabin as Don's back hurt.

I have asked our oncologist to consider backing down on the Xgeva. Haven't heard back yet.
Posted 2/18/2015 12:34 PM (GMT 0)
Moonlitnight; good luck today with Dons first xofigio shot. The only thing is make sure he drinks lots of fluids. Daves only real side affect was diarrhea. His first round was the worst and lasted for days. But that doesn't happen to everyone. So I hope its just Daves system. .I know some of the American freinds I have say their guys just get Xgeva every 3 months. For Dave his mets load is crazy and is worsening as per his last bone scan so I don't think going without it monthly would be a option.Monday he gets both the firmagon as well as the xgeva shot.
Well better wake Dave up as I like his pills to be roughly same times and fragmin blood thinner at roughly 8:30 every day. So let us know how the xofigio goes today. The best thing is the infusion of it is very fast.!!
Posted 2/18/2015 2:49 PM (GMT 0)
Thanks Sue. Don was feeling very good yesterday and appears to be very lively so far this morning. Will update later. I won't be there (I have been banished ;) ) His buddy lives close to the hospital so he is going straight over to visit before.

Post Edited (Moonlitnight) : 2/18/2015 9:33:04 AM (GMT-7)

Posted 2/24/2015 4:22 AM (GMT 0)
Hi Moonlitnight:
How is Don doing post xofigio? Dave is almost at a week after the 3rd treatment and so far no diarrhea! Really side affects free! I think blood levels are low with red and white probably both down. So if its not building up fast enougn I hope they have sense to put him on a blood cell booster. I know the neulasta is expensive but I think they should have something that covers its cost. .Today was firmagon and xgeva shot day. Home care on Thurs and that is the week gone!! Well let us know how it goes.
Posted 3/1/2015 1:18 AM (GMT 0)
Hi Sue, just came home yesterday from a week in Tofino (as far West as you can get!). The Right after the Xgeva, Don was very fatigued. He had his Xofigo at the hospital and the doctor was pleasant, unlike at the cancer agency. In Tofino, the fatigue continued for three days, no SEs from the Xofigo, and he was eating very well for a change. Then, on day 4, he said, I'm going to walk to the end of the beach (It's a mile) and off he went. He was not at all fatigued for the last few days and was eating like a horse. Today, he is busy unpacking, sweeping and acting like he was before the awful skull/brain problem. He is on dexamethasone, which the Ra oncologist called a "wonder drug" so I am hoping it is NOT that, and the the Xofigo is actually working. His lower back ache/pain hasn't fully left but I can tell it has improved as he is not complaining of forgetting his Advil. He is taking a few complementary therapies as well, as recommended by our naturopathic oncology specialist.

How is Dave? Is he getting the Neulasta? I have been giving Don some natural immune boosters so we will see how that pans out. He is also starting O2 therapy. It doesn't increase the O2 of the RBCs, only of the blood plasma. Both these therapies are being provided gratis by my clients.

Regarding PSA, we were advised in Radiation that it could rise due to cancer cell death. Dr. Myers mentioned this in a video, I believe.
Posted 3/1/2015 3:36 AM (GMT 0)
Glad to hear you and Don had a good trip. The side affects didn't seem to bad other than fatigue which is s good thing. Being away and diarrhea ard not a good combination I have to phone oncology on Mon as poor Dave is still so extremely short of breath. Tonight I was scared he was going to have me call 911 , thats how bad it is and recovery after even the slight exertion is about 10 minutes just to get back to normal breathing. We had palliative care reduce the Hydromorph he is by 20% and before he had ever taken one pill of that had I read the product monogram it would of been no thank you .But really the problems all relate to blood levels being to low.
Well our weather is terrible as it has been so cold -25 this am snd with wind chill -34 brrrt. Any way its our Canadian heritage to complain about it!
Have a good night ,Quincy who posts on here had his first treatment last week as well. He has posted reults on his thread. Sue 💙💙💙
Posted 3/1/2015 5:44 AM (GMT 0)
Darn, Sue, that is very worrying I am sure. I know the dilaudid can cause breathing problems. Our neurologist said Don should get off it stat, when he was prescribed it for the head pain. It caused so many problems.

That is very cold indeed. We think it's cold if it is plus 6. Will read Quincy's thread now. Take care. xx
Posted 3/2/2015 11:56 AM (GMT 0)
Hi Moonlitnight;
The dexamethasone for sure is a feel good drug and Dave had 10 days of it post this last xofigio. The only thing they never did a step down , half pills for a couple of days and it should be stopped gradually. How many pills or days did Don get? Even if you get down to 2 pills go 4 days of half dose. Dave has arthritis so he goes on cellebrex after the dexamethasone as you cant have the 2 of them together. So far the lessor amount of Hydromorph seems to be keeping pain level pretty stable. I hope to decrease that again in a month if he stays like this for pain. I wished we had bloodwork again before the 13th as I think levels should be monitored better. Today we have home care for a reassessment . I hope they don't want to come more often than the once a week. They really just keep track of vitals and this time I am making sure to clarify only am appointments. They wreck it so Dave can't nap in the afternoon and he is just to fatigued to not sleep by then. So for Dave bloodwork on the 13th plus xofigio on the 17th # 4 if all goes well
Posted 3/3/2015 6:18 AM (GMT 0)
This is so sad

A good Medical team is the key..Keep searching until you find one
Posted 3/3/2015 6:21 PM (GMT 0)
Sue, we consult with Dr. Strum online through his changebot page. He is incredibly good and a wise, caring and compassionate physician.
Posted 3/3/2015 7:39 PM (GMT 0)
Well oncologist just said basically suck it up breathing is just sign of progression? He does not have any idea of how bad it is Dave can not even get out of a chair to stand up with out sounding like someone who just finished a triathlon! Showering almost does him In. He is getting to the point he is scared to shower and is only having one every couple of days so he doesn't have to put himself through the agony. This bothers him so much as he is such a clean freak who some days would shower twice. I would have him bath but not sure even if I helped if he would be able to get up from a sitting in the tub position. But legs feel way better than they did before xofigio. I just cannot wrap my head around the health care system that doesn't make Drs test and screen for PC and follows task force guidlines. Any Dr who doesn't carry out those tests just shouldn't be a Dr period..

Dx May 6 2013b gleason score 4+5=9/10 perinural invasion
Psa at dx 80 started Firmagon April 16/13
Hormone refactory Aug/13 PSA 7.5
Dec/ 13 prosvac drug trial 12.4
april 24/14 laser turp psa 193 May 23/ 14 docetaxel chemo psa 387.4
Sept 5 / 14 psa 737.5 6th and last round of chemo
Oct 15 /14 psa 743.5 stopped xtandi Dec 3 /14 psa 1,294.4
Dec 15 /14 psa 1670 first xofigio Dec 17 /14 Jan 10/15 psa 3,005 Jan 14 /15 #2 xofigo Feb 6/ 15 psa 2,582 round 3 Feb 17/15
Bone mets increased and diffuse Ribs, Pelvis, Femurs, Scapulas, Thoratic, Sternal, approching what they call malignant superscan pattern. Plus various lymph node involment.
Posted 3/3/2015 7:57 PM (GMT 0)
This is similar to the experiences we are getting here Sue. Someone in Edmonton just emailed me with info on where to get tests recommended by Dr. Strum. You should go there as he is so very helpful and kind and there is no charge. I don't have your email link so I can't email you the info. Mine is on my profile. We noticed a marked difference in Don's colouring and fatigue following oxygen therapy with exercise. I would like to hold our first GP responsible for the spread of Don's cancer in the year or so that he did nothing, not even a DRE, when his PSA suddenly accelerated to 4.0. But of course, you can't prove a thing. Don's last CT was so bad that the oncologist said it would be "a rough ride" in the next few weeks and referred him to a palliative care doc. This one opened the conversation with, "I am here to help with pain relief, funeral arrangements...." at which point Don stopped him with, "Since I'm not planning on those for a long time yet, we can skip that part." The doc looked at him, grinned and said, "Glad to hear that." The other j**k who thought cremation was a suitable topic literally sneered at a similar response from Don as we left the BC Cancer Agency. All this doom and gloom is completely unacceptable in the eyes of three top PCa specialists I have spoken to in the US. They say if anyone asks for a prognosis, that they can only offer statistics and will do this, but will never suggest to a patient that imminent death is in the cards if not solicited. Two of them have told me to ignore whatever is being said and to ask instead, how is he feeling? Makes a lot more sense to me. So let's hope we can get Dave feeling better somehow. You might ask your doc if he/she considers oxygen would be helpful. He/she will likely say not but the choice is up to you.

At the moment, Don looks considerably better, is walking long distances and is generally in high spirits. I am hoping this is not entirely due to the dexamethasone and that the Xofigo and various complementary therapies we use are contributing. There are some suggestions I have that are better discussed in an email.
Posted 3/4/2015 3:34 PM (GMT 0)
Moonlight, I am appalled by your treatment, in my 8 years as a G-9 I have never been treated so coldly. In fact, the staff and Drs. Have all gone out of their way to maintain my QOL. This needs to be reported!

Sue, I'm so sorry to hear that Daves PSA continues to rise. I won't get my first post Xofigo PSA until 03/20 but will post it then in a new Xofigo thread. As you know, I'm being treated proactively, PSA is only 122, and they want to see if they can stop the mets before they form. I have new shoulder and pelvic pain so am not too excited about treatment as yet, hang in there girls . . . Q
Posted 3/4/2015 5:34 PM (GMT 0)
Quincy, bless you and thanks. Yes, I could write a book, and a hundred letters to the powers-that-be about these fools. They are not "physicians" but rather egotistical excuses for them, highly paid by US through our taxes. I want to report Dr. S.T. at the cancer agency but am concerned that, should another set of 6 injections become available, and assuming Don has responded well to the first six, then he won't let him get them. He struck me as being evil personified. He has the power unfortunately. I am a fighter. I believe we must stick up for what is right, but if I am making a choice between altruism and the well-being of my beloved husband, there is no question... sorry. just feeling overwhelmed with emotion at this point so will just wish YOU the very best and let you know you are in my thoughts and meditations.
Posted 3/4/2015 5:57 PM (GMT 0)
I understand that feeling of the rock and hard place, Moonlight. My first MO was a devil, he refuses to talk to any of his patients, they have told me this. The final straw was when my PSA jumped from 2.3 to 10.6 in a month. I was frightened and asked him what this meant, he told me that it meant my therapy was no longer working and walked out the door. Fortunately, I was able to find another Dr. In the same clinic who has turned out to be wonderful. It doesn't look like you are in that situation. Maybe it would be best to wait and see what happens. As my RO told me, each round of injections costs something like $15,000. That would keep me from rocking the boat. . . Q

Post Edited (quincy17) : 3/4/2015 11:01:38 AM (GMT-7)

Posted 3/14/2015 2:09 AM (GMT 0)
Well some good news bad news from Fri 13th oncologist appointment. First the good PSA dropped and now sits at 2,295 down from last months 2,582. Any drop is good news considering we are basically doing nothing to treat the cancer to make that drop. Xofigio that Dave is on really does treat the bone mets. BUT blood transfusion is on our agenda for Sat as hemoglobin has dropped to 78 .The neutrophil level however is a go for Tues xofigio injection so we won't have the delay in treatment like we did with the 3 rd infusion.
Who ever would believe that I would be happy with a psa read of 2,295?? To some of you reading this you would question my sanity. Thats ok since this diagnosis of stage 4 aggressive PC for Dave I questioned it as well.After you have what i call being to hell and back... well you all know what its like!!At the start of it the psa was 80 and that number sent us over the top. Now i would
give anything to see Daves psa down to that. My hope is the transfusion will stop the dizziness , help with excruciating shortness of breath and take away some of the fatique. Dave is nervous about the transfusion but if it helps it will be so worth it. I wished though that bloodwork was monitered better as perhaps 2 weeks ago hemaglobin was this low . I can't see all these affects not being hard on the heart. If you could hear his breathing just getting up from a chair you would expect him to grab his chest and fall to the floor. Because he can't do anything he is I am sure at risk for pneumonia as well with decreased lung function it will atrophy in being able to breath. Use it or lose it !!
There was good news and that is the focus of this post!! I hope you all had good day as well!
Posted 3/14/2015 2:38 AM (GMT 0)
Sue,

You are right on, most people couldn't relate to that high of a PSA.

I do want to mention, that my hubby has had multiple blood transfusions because his blood count was low. They do help! He will honestly feel better.

I think of all these women and men that go through this disease and it really is a roller coaster ride to say the least.

Hugs to you and all.
Enjoylife
Posted 3/14/2015 4:52 AM (GMT 0)
Sue, this is VERY good news and I am doing a happy dance for you and your sweetie. xx Enjoy your weekend.
Posted 3/14/2015 4:05 PM (GMT 0)
Sue,
That is wonderful that Daves PSA dropped and that the Xofigo is working. I will be having a blood draw on Monday preperatatory to the following weeks second injection. I'll post about that after its done. Like you, my fingers are crossed. All my best thoughts to you both . . . Q
Posted 3/15/2015 6:12 AM (GMT 0)
Sue, Keeping you and Dave in thoughts and prayers. I sincerely hope the xofigo and transfusion help with his pain and breathing. That feeling of helplessness is enough to bring you to your knees!
Posted 3/16/2015 10:18 AM (GMT 0)
Thank you so much! Tomorrow we head to Toronto for xofigio #4 and itvreally I think has helped with leg pain. Final scans I June will be the tell all. The oncologist did ask if I had secured funding for the Jevtana so that may be next. Celebratelife, did that help your hubby and was it bad for side affects?Blood transfusion has given relief from breathlessness. Yesterday he was able to shower with a bit of ease. It had gotten so bad he just could not do that every day ! You must have been through alot of issues with your husband as well as he has been through alot of treatments. How is he doing on the Dribbles study? I told our oncologist I will have Dave there sleave rolled up and ready to go if they use virus therapy on prostate cancer. It is very exciting that they have cured Lukemia and brain tumours using that therapy. What is the base to the Dribbles vaccine. When Dave did prostvac it was bird flu based. How is your husband doing ? How about you?
Posted 3/16/2015 10:30 AM (GMT 0)
Thank you so much! Tomorrow we head to Toronto for xofigio #4 and itvreally I think has helped with leg pain. Final scans I June will be the tell all. The oncologist did ask if I had secured funding for the Jevtana so that may be next. Celebratelife, did that help your hubby and was it bad for side affects?Blood transfusion has given relief from breathlessness. Yesterday he was able to shower with a bit of ease. It had gotten so bad he just could not do that every day ! You must have been through alot of issues with your husband as well as he has been through alot of treatments. How is he doing on the Dribbles study? I told our oncologist I will have Dave there sleave rolled up and ready to go if they use virus therapy on prostate cancer. It is very exciting that they have cured Lukemia and brain tumours using that therapy. What is the base to the Dribbles vaccine. When Dave did prostvac it was bird flu based. How is your husband doing ? How about you?
Posted 3/16/2015 2:06 PM (GMT 0)
Sue,
Like Dave, I get breathless in the shower, plus loss of muscle tone despite walking and such, makes it hard to shampoo and scrub. Connie and I went for a short walk yesterday, about 1/4 mile, was winded but know it helped as I slept better. Just waiting for blood draw later this AM . . . Q
Posted 3/17/2015 6:16 AM (GMT 0)
Sue, my heart goes out to you and Dave as you search for something to help. It has to be sooo scary for you when he has such a hard time breathing! The jevtana, I think is the same as cabazataxil, helped Gary a LOT, and he could receive it since they figured out how to administer it without the horrible vascular reaction that turned him beet red the first time. He tolerated it amazingly well and felt really great. I think he managed 12 treatments before it failed. What is Dave's psa now (sorry if you posted and I missed it)? I would suggest just trying to get on the chemo asap, as the xofigo is palliative for pain, from my understanding and the jevtana is a treatment to kill cancer. We just returned from Portland on Sat and today Gary was feeling really good, and for the first time in weeks didn't need any nausea meds when he woke up. I was told the vaccine would not "kick in" his immune response for several weeks, but I believe in miracles and we are all praying for one. Keeping you and Dave and all the others from the "corner" in my thoughts and prayers daily. See if you can find the thread about DRibbles that PDA responded to with a whole lot of information about the vaccine. It is grown from lung cancer cells and uses the ribosomes from a cancer cell in the vaccine. Unfortunately Providence doesn't have any more current funding for more prostate patients, but perhaps if Gary responds well they will get some more backing. You'll be the first to know if I hear of more patients.
I received a sweet card from my coworkers today that defined me as a "tough cookie". That's what PCa does to those living with it. While it is slow growing and most can be successfully treated for years, it feels at times like it takes over your life and holds you hostage.
Gary and I have learned to take advantage of every "good" day by doing something memorable and fun, and I have made a conscious effort to continue to exercise and do stuff for myself, even if I have to leave him for a few hours while he's feeling miserable.
Try to take some time for you too Sue, as hard as it is to find time.
Sending you a cyber hug wink
Beth
Posted 3/17/2015 11:04 AM (GMT 0)
Thank you Celebratelife for your information on cabazitaxel (jevtana). I think the worse part of this cancer is the fear of running out of what is next to treat it with? Daves PSA did a slight down turn to 2,295 almost 300 points .thevblood transfusion has helped with the shortness of breath and thank God for this. It was so bad and when I phoned the oncologist 2 weeks before our appt instead of just saying its disease progression he should have said to get a blood sample and then he would have ordered that transfusion then instead of making our lives miserable for those weeks. I can't say that struggling to breathe would be easy on the heart and the less red cells harder for rest of internal organs. I believe you are right about going to jevtana as I think as well we could revisit xofigio later. We have had months were there is nothing being done and it would be alright if at least hormone therapy was working but that went refactory to Dave just 4 months after he started it.
I am not working and I think its amazing how many wives are doing ""It All"". That is alot to handle. For us its travel to appointments 11,800 kms and last year was 74 days in Drs appointments, Hospital, visisits ect. .I try to get out a couple times a week to lunch or coffee with freinds. I need to exercise as well and as soon as the mornings are a wee bit nicer will start my walking routine. To much ice and snow this winter! I am carefull what I do because I don't know what we would do . Dave can't do anything and house , yard is all mine to do. I love a good hour walk at 6 am , my favorite time of the day! Glad we have a low maintenance house and its a bungalow. Dave wouldn't even be able to do stairs. QOL is definitely deminished in so many ways. How does your husband cope on a day to day basis ? Is he able to things to help around the house?
I think Daves cancer is the aggressive type and not the slow growing kind. His bone scan looks like a xmas tree of lit up areas . We have to find something to slow his progression down. He did 6 rounds of docetaxel and that never did anything for him . They had wanted him to do 10 rounds. .I will look up dribbles and see if there is a Canadian study going on. They arecdoing just amazing things with virus therapy and Ottawa about 3 hrs plus from us has been using measle vaccine to not only treat but to CURE some cancer. I told our oncologist Dave will be there sleeve rolled up if he can get him that. .
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