My recently dad had ten days of radiation, then immediately started Xtandi. It’s been two weeks and he is so sick. He is extremely fatigued and nauseated. He stays in bed all day except for 30-45 minutes three times a day. He is not eating, only drinking 3 Ensure a day. He is losing 3-5 lbs a week. His heart-rate was so high 2 days ago, his dr sent him to the ER for fluids. He is dehydrated but can hardly force down the 3 Ensures a day and some Gatorade. At the ER he had a CT scan and was informed cancer is in the lymph nodes (he already knew it was in his bone and liver). My dad is 65 and losing hope. He’s always been such a fighter, but he told my mom today that he can’t continue living like this; that he’d rather die than feel so horribly sick. He sees a new prostate oncologist this week for a second opinion. We are scared and so is my dad. This really sucks.
Is it Xtandi making him so sick or is... - Advanced Prostate...
Is it Xtandi making him so sick or is he nearing death
Xtandi is very fatiguing. More than a few men end up having their doses cut. Cutting the dose helped me, but I still sleep a lot. Xtandi can also cause joint and muscle aches. I’ve had lots of different treatments. Xtandi has been challenging, but encourage your dad it improves a bit, especially if they cut the dose. Best to you.
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Baking soda is the answer. What was the question?
My doctor says that Xtandi is very rough on his patients. More likely the case than "nearing death".
-Patrick
Xtandi made me a complete invalid. Cut dose 5 times. Ended up with 2 pill all week and 3 on Sunday and I have a life again and can function. Even went back to work for 4 mo. before retiring. Cut his dose....
Is it still working at that dose?
PSA steady at 0.122 for last 6 mo.----0.140 for 6 mo. before that even after cut from full dose. Looks like it is still working for now. Full workup and scans at end of May.
This idea of cutting the dose is not something I've tried. I'm 7 years out with Lupron and Xtandi. I fear it will be easier for the cancer to find it's way around the treatment. I get my Xtandi free at NIH. I'm a stage 4 , M1, Gleason 9, doubling every 5 months. I had 3 bone mets on the spine all since resolved. PSA is now .02 which is as low as the lab goes there. PET, cat and bone scans just show arthritis. I take Prozac, desimpramine and Wellbutrin for depression. I also take gabapentin for peripheral neuropathy in my feet. One milligram of Klonopin is taken at night. I also take atenolol for blood pressure. They've considered lowering the dose but rather use pills for side effects. I think lowering the dose will shorten the effectiveness of the treatment. I could be wrong but there has been many complaints about Xtandi only lasting 6 months. Lowering the dose could be a factor in that. It takes motivation and 3 cups of coffee to get me outta bed in the morning. It's no bowl of plums.
In your case looks like no toxicity trying to kill you. Keep at it and best of luck for another 7 years.
I have been on ADT for about 7 years, with one break that did not go well. I was put on Xtandi about 16 months ago and had to cut my dosage from 4/day to 2/night. Lets me get some daytime enjoyment at least, with fatigue being the biggest issue. I would cut the dose if my Uro and Onc agreed, as mine did. Good luck!
Can you expound on your break not going well?
Crabcrusher
I had been on Eligard for 1 yr, and uro suggested a vacation. We talked a bit, there seemed to be no harm. 3 months in, psa 1.2 I think. No response to cialis. 6 months in, psa over 10, still not ED fix. 10 was basically as high as I had ever been. They scanned me again, nothing but prostate bed lymph nodes. They put me back on ADT, Trelstar this time. 3 months later, back to undetectable. Been that way since, about 6 years now.
Hang in there. My husband had radiation that made him like your dad. A month after radiation he was better with a change of scenery. He is 63. Now he is on chemotherapy & tolerates it better.
My husband has been on Xtandi for 14 months and presently half dose. Xtandi is still slightly lowering his PSA but we hope to get a PSMA scan soon to see if there is disease progression.
Xtandi has been tough on him and when he lost 40 lbs in 14 months we blamed Xtandi. We have been eliminating and lowering other medications experimentally. His neurologist just told us that Aricept (for memory loss) causes weight loss in up to 30% of patients. We are trying to withdraw that and change to Namenda.
He seems to have a normal appetite but just gets thinner and thinner.
So far I’ve been lucky, I started Xtandi a week and a half ago then took a trip driving 2000 miles and so far so good. Now wether it’s working time will tell. Don’t get me wrong between lupron and Xtandi I’m fatigued but I’m able to work through it.
Shoot, I've been on Xtandi and Lupron ( full dose) four and a half years now. Prior to that, Lupron alone, 2.5 years. It makes you feel terrible at times but what are the alternatives? Chemo? Provenge seems like just an add on. There are other immunotherapies in clinical trials. I'm 66 , should I wear this drug out before hopping around? I don't know. Everyone says I'm doing great but I don't feel great.
I’ve heard Zytiga and xtandi are the same or close. Did you get that choice. I’m doing the Zytiga and I get a little tired but that’s about it. The busier I am the less it affects me.
I'm in a clinical trial at NIH. I get tests and Xtandi at no charge. At the time they were doing a clinical trial out of Massachusetts. It was Xtandi and zytiga together along with Lupron. You did however have to pay for zytiga. It was 488 a month. So I went with NIH because they pay for tests ,travel, medication... It was a 2 tier trial ; one Xtandi alone, the other Xtandi and prostvac. Im in Xtandi alone. I 'm all alone with Xtandi (and Lupron) lol.
Did you do radiation at some point with the drugs or do they think the drugs will do it alone. I am on the Zytiga and lupron but did 39 rounds of radiation to hopefully kick the crap out of my body
For me it was Lupron for 2.5 years than Xtandi added to Lupron for 4 years. No radiation yet I've taken Zyflamend that's about it.
So many different approaches. Must drive the drs crazy because every guy is in a different stage. Good luck with yours.
It's entirely possible it's the xtandi. Husband was put on it and it was a nightmare. Mental acuity gone, complete exhaustion 24/7. Lots of interest and hope. Talk to the docs about something else
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