Xtandi side effects, results, etc

Missyj, my husband worked just as he was beginning to take xtandi. Then after a month, the fatigue really set in. Fortunately, his work did not need him (machine shop), and he could leave work. (They would probably take him back if they get busy again and if he felt he could).
The fatigue has lingered with him even after stopping xtandi.
He has noted a change in taste buds so things that he loved to eat once he doesn't. He is determined not to lose weight so he gets to eat (almost) what he wants!
It is hard to see, isn't it.
My thoughts are with you. All I can say is you are not alone. I am at your side as are others.

Great news. Lets try to all have great next doctors appointment ..... In honor or spring

This month is going to be the good month.... For everyone. The transfusion is only the beginning of his feeling better. You WILL have a good trip. We WILL have a good bone scan. Nhwife's hubby WILL have more energy

That is my belief an I am sticking to it

littlenm, I can get there with you! We will have a good month and a good month after that!
Thanks, I needed some positive thinking. It's too easy to go the other way.
Passages, hope the blood transfusion does the trick - sounds like a good beginning!
smo1 - good update!

Hey Bud,

I was wondering if you could do Provenge with the xtandi?

Jerry

Hello everyone, Jitters99, nhwife, Henry3rd, Passages smoi, littlenm, chinki, Missyj, purgatory and Radad (and others that I haven't named but are on this same trail)...
Gosh, it is spring isn't it! The flowers are blooming, the sun is casting a shorter shadow, and the pollen is swarming.....I do so want to smile again and not dread the days, seeing my once vibrant, energetic, husband change into this fatigued, almost lifeless and listless man. Who now has trouble getting out of a chair, walks slower every day, try's to smile and joke around, but deep down in his soul he fears the inevitable, as I do, as we all do. I hear all of you and grieve with you, I want to hold your hand and give each and every one of you a pat on the back and a hug. Will that stop the worry, the pain our men suffer with, the constant fear of hearing those "numbers", no it won't help, but knowing that there are others walking this path with me, it helpful. To know that I am not alone in my grief, knowing what is "around the corner" you might say, is necessary for me, so I can be ready to handle that next turn of events "head on" and smile for my man and tell him, "don't worry honey, we will handle this together".

I am sorry to be so "down", but we just sold our RV, because he is not strong enough to drive for long distances and do much of the "setting up camp" anymore, not enough energy. We had to do the same thing with our boat, de-cluttering our lives, closing chapters in our Life Book one might say.

His appetite is waning as well, he used to have a voracious appetite, and now he eats just small portions. Don't get me wrong, folks, I am glad that he is eating, but it such a change. He had started to get some of his strength back a few weeks after his last taxotere infusion session. Took the RV out for a three week visit with our oldest son, but by the time we got back home, he was mostly in his chair and has had a hard time getting "up and down". Will be getting his fourth month supply of Xtendi and possibly a PSA at the next doctor appointment (April), then maybe scans the first of May. Has complained more about his back and now his right clavicle area, scans never had anything there (clavicle), so do not know what to expect the next time we get the scan results.

Will take each day as a miracle given to us by God and enjoy and use it to please our Lord and my husband and do the same, day after day after day for all of days that we have left to enjoy...

Henry3rd, check with the hospital and see if they have some funding organizations that can help with the cost of Xtandi. I know our copay is $1000.00 per month until we met our "out of pocket".

Love and prayers to you all!

Bud and anyone on this drug looking for side effects. My husband takes his Xtandi at dinnertime. They say that the side effects are similar to Lupron, and since he has been on Lupron since 2001, it is really hard to see any side effects. He has been trying to lose weight for a year, so am now seeing a big cut back in what he is eating. (diet, going off prednisone, or loss of appetite? don't know which) A year ago, he was walking 5-6 days a week, then started at the gym 3x a week and walking the other 2-3, now he is doing just the gym. He loves to work in the yard, and some days will work 3-4 hours out there and other days little or no time. He doesn't take a nap, but is in bed by 10 and up anywhere from 7 to 8, so is requiring more sleep. He has been complaining of pain in his back for about 6 weeks now. Doctor didn't seem concerned, and maybe knowing doesn't really matter! He is having trouble with his eyes. One is very bloodshot most of the time and they both seem to have a glaze over them. His vision isn't as sharp as it was, either. His numbers are low, .22, so that is great!
We got help meeting our deductible after filing out paperwork from the drug company. Form I filled out was on their website. We will now be paying $363 a month for the remainder of the year.
I feel the same tednsal, this battle has waged on a long time and it has taken so much of our life away. When my husband started his chemo last year, many around us seemed to think he should carry on without any problems since he had done so well up until that point battling this. Many didn't seem to even remember he had been battling cancer for 11 years. (Maybe that's a good thing!)
I am so thankful I found this site. It is wonderful to know that we are not alone. That there are others out there that understand and I am so thankful for what I have learned here. Wish I had found all of you sooner, but am glad I have found you! I think we have learned to enjoy life and one another so much more because we know our length of life may be shorter than others. Fighting cancer has helped me to see what really matters in life and for that I am thankful! I pray we all have the strength to battle this for our loved ones!

I am so sorry we are all on this journey but I can't tell you what a help and support you all are. Your words continue to help and I feel bolstered.
I hate to say it but my husband's energy and pain levels all began with the xtandi. Before that drug, his SEs were minimal. Since that drug, he hasn't recovered his energy and the pain seems continuous. There are "good" days but there seem to be more bad ones.
So far he isn't losing weight but he is eating very differently. I am concerned so I do let him have his ice cream. I also make sure meals are healthy.
He does try to be active: treadmill, walking the dogs, household chores, etc.
But it's all different. I am trying to adapt to this next new normal.
You all do help - thank you.

I hate to say it too, but my husband's problems started when he first took Xtandi.

Yes, he had a problem with calcium from his bone tumours entering his blood stream, but that is now under control, and he continued to have no energy/appetite/zest for life.

The positive thing is that his MacMillan nurse prescribed two drugs which have helped a lot.

The first is a drug called Levomepromozine. This is usually used as an antipsychotic, but is also used in palliative care when patients have nausea/no appetite/anxiety etc

The second is a steroid called Dexamathasone

Since starting these drugs, he has had much more of an appetite, and is spending more time downstairs with the family, and less time in bed.

They both come under the 'palliative' remit, and may not give relief for a longer period of time - but as long as they are helping him feel better now, who cares?

Not sure if the drugs have a different name in the U.S (we're in the U.K) but might be worth a look.

Hi Barb, welcome to this place no one wants to be but if you have to this is the best resource and support, hands down.
You might want to start a new thread to make sure folks see your questions.
Quite a few guys were on xtandi, my husband included. His side effects were fatigue and back problems. He's been off that drug this year and hasn't really recovered energy. Xtandi also did not work and his cancer has progressed. He went back on zytiga at the beginning of this year and is still on it. He just finished a weak of radiation therapy to mets in the pelvic and lumbar areas.
Like you two, we have been on this journey a long time, beginning in 2002.
Best wishes to you and hope folks can chime in.

nhwife, Passages,

Thank you so much for your reply. My prayers to you both. My husband only started Xtandi yesterday and he is refusing to take anymore. Can side effects happen that fast? My nerves are a little rattled today. I just need to take time to absorb. I'll catch up later. Hugs Barb

I'm trying. We are starting with a new oncologist this coming week. Hopefully, she will convince him. I'm scared if he doesn't take it and scared if he does, with all his other problems. Thouhgts, prayers an Hugs