I had hoped to update you all on my first month on Xtandi. But that was complicated almost 3 weeks ago, when I was rushed into hospital for emergency surgery on aparastomal hernia causing a blockage. I was given a new stoma, and have spent the last three week recovering. Except...I don't feel like I am. One of the big issues after bowel surgery is getting hydration levels balanced. I'm currently dehydrated, but with a stoma dehydration, just drinking more simply makes things worse. So, that's making me feel light-headed and breathless.
I've also little appetite, however, and have lost a lot of weight. Because of the higher risk of another hernia, I'm limited in what I can do to prevent muscle loss (I don't like to look in the mirror). Since I was discharged from hospital 5 days ago (probably a little too soon) I have felt increasingly tired. Yesterday I walked for about half a mile (my usual distance is 4-5 miles). Naturally I'm wondering if the Xtandi is having an impact upon this exhaustion. In the process of writing this post, my Onco got in touch to say 'stop Xtandi now' (I'm due a PSA test tomorrow). When I started on the Xtandi, until the emergency (about 7 days) I had no side-effects. That may simply not have been long enough to judge. But, right now, I feel as though I have to foucs 100% on getting stronger. So, I will stop, temporarily. My PSA on switching to Xtandi was 6.1 - I will find out tomorrow if 4 weeks of treatment has lowered that.
Any comments/suggestions you may have are, as ever, welcome - and please be gentlye with me!
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CrocodileShoes
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Yes every time my husband ended up in the hospital or ER we/I blamed it on Xtandi/abiraterone /darolutamide and we stopped it. In hindsight, stopping was a mistake as his PSA climbed and cancer progressed.
Your experience is unique but you are following doctors orders, right?
Doctors (my onco) orders are to stop completely until I start eating and regaining strength. I stopped yesterday and already feel better. Given the reports of similar efficacy with half (even quarter) dose, I'm hopeful that a gradual reintroduction will be possible in a couple of weeks.
Extreme exhaustion seems to be a side effect for a few of us, me included. Yes, Xtandi SF hit me on or about the 3rd week after I took it. Now I’m on half dose on oncologist’s agreement. What you are going through sounds very similar to my experience. I dropped about 10 lbs in about 12 months prior and in a week or so after the Xtandi ordeal, I dropped 10 lbs. I was 150 lbs plus for don’t know how many years but now weight 130 lbs. luckily it has stopped when I finally can get some food in. The loss of appetite is profound. Anyway I hope you can get out of it and still find a drug to contain your PC without giving you much suffering.
That is a terrible situation CS. Stopping Xtandi is essential step. And restoring nutrition and hydration. Consult an enteric nutritionist as I understand proper nutrient and electrolyte balance is essential. Certainly not plain water. Perhaps some special meal replacement designed for the purpose?Must correct that first, then get on with living and controlling PC progression in some other way. Have you been through abiraterone? Also bicalutamide (Casodex) works for many with much better side effects profile.
Update: I'm one week off Enzlutamide and feeling good. Have discussed when i should go back on with my onco. In the 10 days I was on it (before the surgery) my PSA dropped 50%. So, he's relaxed about me starting up again. I sent him the links to the patients who'd done well on half or even quarter-dose, and said that's what I'd like to do after 3-4 weeks (probably start on 1/4 and see what happens to PSA. It does seem to be a remarkable drug, and I'm hoping I'll be able to tolerate it. I had no problems with Bicalutalmide, but I realise this is stronger stuff.....Feeling stronger as each day passes. Thank you for all your kind words.
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PSA falling, Prostate Cancer increasing. Very Confused.
Now I'm really confused 
Xtandi stomach pain
Xtandi stomach side effects
Xtandi + Niacinamide
