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Update on Marshall's journey with Zytiga - PSA down to 1.04!

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Posted 7/15/2013 4:56 AM (GMT 0)
I haven't been here for a while and that is because things are going very well since Marshall started on Zytiga in March. Before Zytiga he was in a wheelchair and on oxycodone and morphine for the pain.

For four months now he has been pain-free and off of the painkillers. His PSA continues to drop and this past week it was down to 1.04. A day for celebration.

There have been side effects, though. The hot flashes are really tough, the fatigue is sometimes overpowering, his legs feel like lead weights and walking is tough, and the prednisone has caused what the doctor says is petechia (broken blood vessels) in his arms. He has also been dehydrated two times and had to be hooked up to IV. He developed anemia so he is on iron supplements. His vitamin D levels are low so he's on a high dose of vitamin D. His knees always feel wobbly. I guess that brings us up to date.

Zytiga continues to be a miracle drug for us. I hope it does the job for us for a long time to come and I hope it does the same for many many more.

Marilyn
Posted 7/15/2013 5:17 AM (GMT 0)
Congratulations - that's the kind of news we like to read about.

All the best,
Andrew
Posted 7/15/2013 6:43 AM (GMT 0)
Great news, Marilyn! Hope the impact of side-effects will lessen as your hubby finds ways around them. Best to both of you!!
Posted 7/15/2013 9:37 AM (GMT 0)
Wonderful news, Marilyn! Hopefully the SEs will diminish. Good to hear your update!
Posted 7/15/2013 4:24 PM (GMT 0)
nhwife,
How did the radiation go? When Marshall had radiation on his spine it totally got rid of the pain in that area (although it caused other issues that took a little time to resolve, like radiation colitis).

I hope the radiation worked wonders for your husband.

Marilyn
Posted 7/16/2013 12:05 AM (GMT 0)
Sadly it did not work for my husband. We are looking at comatriq or XL184. It has really helped Zimac's husband.
Posted 7/16/2013 12:16 AM (GMT 0)
Marilyn....good to hear the news. I know how he feels with the fatigue as Ive been on Zytiga since March too.....my PSA is dropping but not as fast.....down to 32 now but each month it goes down some.  My back pain is also gone and not sure if it was from the back radiation I had or the zytiga....Im thinking the zytiga.  Yeah but no doubt the hot flashes and fatigue are rough......there are some days where Ive got all I can do to get out of bed.....I hate those days but like you I don't mind as long as the drug keeps working...good luck...chris
Posted 7/16/2013 2:37 AM (GMT 0)
Casper319,

Boy, your story sounds a bit like Marshall's. I'm so glad the Zytiga is working for both of you. He had some radiation to his spine in December and while it came with its own side effects, it got rid of the back pain. He was really suffering from the pain. And he says his legs feel like lead weights -- is that how yours feel? The hot flashes get to him, too, and he also has days when it's all he can do to get out of bed. We bought a few of those 4-legged canes and sometimes he just needs to use the cane all day. He also went ahead and got a motorized chair (Medicare paid for it) and he uses it when necessary. We keep on going.

Good luck to you! You will be in my thoughts and prayers.

Marilyn
Posted 8/31/2013 2:38 AM (GMT 0)
Just wanted to post another update on Marshall and his Zytiga.

For the past two months his PSA has been holding at 0.88 and we are ecstatic about that. However,the side effects are really interfering with quality of life. His legs ache all the time, his knees are weak, he is having intermittent sharp pains in the groin and he coughs A LOT which almost always leads to nausea. He barely leaves the house.

So we are starting a new round with doctors to try to deal with these side effects. First, the oncologist recommended some physical therapy to try to build a little strength. Then they are tweaking some of his regular non-cancer medication to see if we can stop the coughing.

So every day is a new battle, but he has not had any bone pain since he started the Zytiga and the low PSA is good news indeed.
Posted 8/31/2013 9:58 AM (GMT 0)
Mixed feelings here! so glad the PSA is down but the SEs sound brutal. Hope the doctors can resolve that. I have seen some of the others guys on zytiga go down in the dosage a bit (or was that the xtandi?) But maybe that's something to discuss?
Good to hear from you!
Posted 8/31/2013 12:02 PM (GMT 0)
Great news, so glad he's doing so much better. Have a great holiday.

Praying for you and your family!!

Dave in Bartlett, TN
Posted 8/31/2013 11:51 PM (GMT 0)
Marilyn....Glad to see his PSA is low....My last one was 22 and its still going down...just very slow.  I too have back pain and am still on oxycodone which seems to work well.  I know exactly how he feels with the wobbly knees and leg/joint pain...I have that as well. Ive been trying to walk an hour a day and doesn't seem to be helping much but doing it anyway because my weight has increased on Zytiga.  I never really recovered from the weight gain on HT. I gained 30 lbs on that and with the Zytiga an extra 15 or so....so I am walking long and hard.  My appetite has gone crazy with the prednisone as kmy Doc said it would.  Makes me feel like I have the munchies  after smoking weed....LOL

My energy level is inconsistent at best....good some days and none the next.....The Oxy seems to work for all my aches and pains though....and my back pain has not really gone but not that bad anymore.....some days I don't take the Oxy either.

My blood is also out of whack some....I have been told to give up alcohol totally except for a drink a week.... shakehead shakehead shakehead ...this saddens me immensely.  I gave up the weed....now the alcohol....and my only crutch is coffee in the morning. cry

But I guess as long as it keeps working then all is good... turn

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