Well.... after 5 rounds of chemo PSA has dropped, bone pain subsided but mobility and quality of life has not increased therefore dad's doctor has decided the side effects are out weighing the progress and to stop. What next??? I need help, support, encouragement and prayers. To all of you living with this my hat is off to you and my prayers surround you. It is beyond difficult and with each appoint when a blow hits- wow it hurts. What or where would you go next?? Oncologist is turning to enzaludimide (xtandi-us). Who's been there- what should we be asking, what other meds, supplements should I be adding? Any suggestions please.
Stopping Chemo- docetaxal (taxetore i... - Advanced Prostate...
Stopping Chemo- docetaxal (taxetore in US) what next?
I'm sorry to see this news. I haven't yet had chemo, so no experience with this situation. I'm glad the doc has suggested xtandi. My best to your dad and to you.
Sorry to hear about you struggles. I have had prostate cancer for nearly five years. Gleason 9, PSA 17.8, six of 12 biopsy samples were positive (all on right side), already had Mets to Pelvis and Spine. I started with Bicalutimide for a year, then Galeterone for a month. Then I went on Enzalutimide for 32 months. After that failed, I did Provenge, then a Phase 1 Clinical Trial, which did a number on my liver. I then was on abiraterone acetate plus prednisone for 2 months. Now I am about to start on Taxotere. My PSA doubling time is now 4 weeks and have liver mets. Xtandi has had a lot of positive results with many patients, you will not know until you try it. Good Luck and Best Wishes!
I have been on chemo (Taxotere & Carboplatin) combined with ADT, for four months now. I have Gleason 9 PC which has spread to my liver, bones, and lungs. My major problem is now in the liver. The chemo has stabilized my cancer. My oncologist will have me on this treatment as long as it is working at stabilizing the cancer. I am in my early 70's and recently retired so this is not the way I planned retirement. I spend my days at home watching TV and reading, confined to the house. I can get out but only with help and the majority of that time is to go to doctors. But I will get to go to my son's wedding on Sunday and I will be able to play a little with my grandchildren. There are wonderful things in life that I can still enjoy. I am hoping for that magic bullet to come along to cure me but in the mean time I enjoy what I have.
My problems with the chemo are weakness, loss of taste, neuropathy in the feet, and urinary issues. I am blessed that I do not have any serious pain now. I learned also to appreciate my wife and children even more as they help me through these trying times.
With a caring daughter like you I think your should consider himself lucky and hang on. If the chemo is working, and the side effects are not too bad, stay with it until it doesn't work, hopefully something will come along by then.
I know I am replying to an old post. But my dad is going to start chemo in a month and is not much younger than you as of your post. His main concern is losing his independence - ie driving and going out of the home. When you say you are mainly confined to home - are you feeling too weak to drive and go out to restaurants, etc? Appreciate your input.
Xtandi was one of the worst drugs my husband was on ..terrible side effects and his psa increased with increased bone pain .but everyone is different .he tolerated this for 4 months .no side effects from zitiga another oral chemo .
Thank you for the heads up. He's in so much bone already and lack of mobility more pain would be dreadful. I did ask about abi and that may be next option. So hard
I did my 10 cycles of Chemo plus Zoladex without a problem. Then 5 months Zoladex and into Zytiga Sept '16. Nil problems but my PSA dropped form 26.6 in Sept to a current 0.030. So I swear by the chemo and Zytiga. My Oncologist planned a 2 year schedule for me not have 4 months to go - point is she had a question mark between Zytiga and Enzalutemide as my current drug but decided to go with Zytiga because to date I have a good drug tolerance. I imagine therefore that Enzalutemide should help your dad. Good luck much love. When you help your dad you are helping all of us. Thank you.
I can't add much to what others have said. Xtandi is a powerful drug. It might help a lot, but it might not. It might make your Dad feel exhausted, but it might not. Each patient is different.
After that, a doctor may be able to try a few other things but the only major alternative I can think of is clinical trials of experimental drugs. The most likely candidates might be drugs that are different in kind than the drugs that have already failed, for example, instead of more chemo drugs or more ADT drugs, maybe "immunotherapy" or "targeted" therapy. These are very much a crap shoot. Experimental treatments always have to do some good and not too much harm in mice before they'll try them on humans, but they aren't proven yet in humans and the odds for success are usually rather limited.
If it's looking like things aren't going to get better, don't neglect palliative therapies. Find a good pain doctor who can keep your Dad relatively comfortable and free of pain and depression for as long as possible. Your Dad's current doctor might be very good at that but, if he's not, you may be able to find a specialist who knows all about it.
Try to spend some time with him. He and you and others in the family might like it if he spent some time talking about his childhood, his parents, and other things that he'd like the family to know. He might like making a voice or video recording. He might like watching some of his favorite movies or going to a favorite restaurant again, or listening to favorite music. He might like family gatherings - or whatever appeals to him. Don't neglect the practical side. He may have financial or other affairs that should be put in order while he can do that.
My personal feeling is that the end of life is just as much a natural and inevitable part of life as anything else we experience. When we think about it, It seems like it has to be horrible. We are depressed and afraid. We panic. But I don't think we have to do that. I think we can try to make it a review, a reflection, and even in a peculiar way, a celebration of life. I think we can teach ourselves to accept it and to emphasize who we have been and who we are as human beings and loving family members right up to the end. And for those who are still alive afterward, we can nurture and enjoy our memories. When I go, I very much want my wife, if she is still alive, and my children and grandchildren, to be able to do that. That will please me as much as anything I can think of.
Best of luck.
Alan
C , I a glad to hear he did have a response to the chemo, that's good!
I was on xtandi for over 4 years, when I was tired I slept. I always took it at night before bed so as not to be tired from it in the daytime. Overall it was not bad, and I remained active. It worked for me, Held my psa stable. Interesting to note on Patricks post today about ways to boost Natural killer cells, and the paper saying increased nk cells fight against xtandi resistance.
Hi there.
I am sorry to here this. This must be a very difficult situation for you. I know exactly what you mean when you say that every blow hurts.
I can only speak for my husband and myself. My husband hasn't had Chemo yet, but doesn't necessarily want to go down that road, and we are therefore looking into alternatives.
One alternative is LU/177, a therapy that is used in 12 treatment centers in Germany at the moment. It is a very new treatment, where the cancer cells are targeted directly by a radioactive substance. You can read up more about it online.
As for supplements, my husband is taking the cellular complex from DoTerra doterra.com every day which is supposed to help to support natural cell growth and help the body to identify and get rid of the unhealthy cells with a false programme.
Thank you.
I am actually a wellness advocate with doTERRA and hebhad been using the cellular complex until the start of chemo. I questioned it and now hesitant.