Xtandi side effects, results, etc

"A Band of Sisters"
I read all of your posts with blurred vision and am "humbled" by the support you are providing each other. Fight on lady warriors--You make angels dance!
Bill

Not sure how I missed this thread. Sometimes I suck at "managing" the info on HW. Although my husband is not on Xtandi (yet at least), I read your posts with keen interest. I am lucky to have you all as my mentors on how to support my husband on this journey of sorts.

Passages - Disneyland??!! Wow yay. Are you taking kids/grandkids with you or just revisiting a childhood? I have never been but hear it is magical, especially with little ones.

NHwife - Waiting is the worst part and what a shame that your appointment was postponed. Did they give you a reason? That is the best thing about our experience at the Mayo (not all have been good) is that appointments and results are immediate. No waiting sure helps

Dear PASSAGES, JITTER99, NHWIFE, LIEFDE, LITTLENM, RADDAD & GUNFIGHTER.....what a "blessing" you all are to me. To know that I am not a "lone warrior" in this battle. To know there are others fighting this fight just as hard or harder than I am, is so helpful to me. In those long "dark hours" when husband is asleep and I sit with the TV on (mostly for noise) and start to read this forum gives me strength to face the next day. Sleep does not come to me as well as it does to my husband (but I am so grateful that he can sleep and does not suffer from insomnia), so during those lonely hours, I sometimes think "too much", and create my own stress, being knowledgeable of what the future holds and not being able to "stop the inevitable" . How sad I feel!

GUNFIGHTER...what beautiful sentiment! Your words are so comforting...WE ARE FIGHTERS!

Since husband has been on Xtandi, he has not experienced any more fatigue than he had while on taxotere. However, he was unable to exert much effort by late afternoon while on taxotere, but he has not been totally exhausted by that time since Xtandi. His hair is coming back, same color (gray/white), appetite is somewhat suppressed, (I made him an apple pie this afternoon - hoped that would "spark it"?). Arms and lower legs and ankles swelling (medication to eliminate this). He try's to walk a little each day (if weather permits), having back pain/spasms, right clavicle & ribs hurt with sudden movement (getting up, lying down, etc), 7.5 lortab twice a day helps manage pain. No nausea, but as I have said, he eats a big breakfast when he takes his Xtandi...don't know if this helps or not.

We R the ones who have the RV and left on the 8th for Hilton Head Island (son lives in Savannah). Weather has been great for ducks....we don't have feathers yet, but need them :). The change in scenery has helped him and myself. Sitting at home is not good for the mental state of mind, so this may have helped a little for the depression. Will have to start back home in a few days for the next monthly lab/injection (Xgeva) & port "flushing" appointment. Scans will be scheduled the first of April. Didn't someone say something about "waiting"...that seems to be what we do now, wait and see what the next scan will show.

Ladies, stand tall and let's keep those "boxing gloves" on. Continue to investigate new clinical trials and side effects that come from them, love those husbands (even when they are "testy)....and pray for us all!

Tednsal, Glad you did get off - helps to get away sometimes, but sorry so wet.

I understand the not sleeping, generally I have particular trouble before the Doctors visit. Didn't even realize it for a long time. I can't allow myself to do it regularly, because of having the little ones....but even the sleeping meds don't work on those nights before tests.

His appetite is still not back to normal, which may be good , but better than it was. He's eating though. The dr gave him megestrol to use. We are holding off now adding more drugs, as long as he make sure he eats regularly or .....

Mine is treading going back on Taxotere and the Neulasta - next possibility. Think it sounds like a threat to him.

I really get the "being knowledgeable of what the future holds and not being able to "stop the inevitable" ." At times it overwhelms, but than I know we've got to face it a step at a time. Don't wanna.

Good to hear from you - it's helpful to hear others struggles, but wish none of us had a reason to be here. Thanks Bud for checking in too. Hope Taxotere continues to work, but not be horrible.

On a poster in Oncology office: "We cannot change yesterday. We can only make the most of today, and look with hope for tomorrow." Have to sometimes make that tomorrow really short term/close to live this.

Good to hear how everyone is doing on the Xtandi. My husband has been on it now since Nov. 30. We just saw the oncologist last week, he spent about 3 min with us and about 2 minutes the month before. Husband quit the prednisone after the visit, got his lupron shot, and his last 3 PSA's were .25, .24, .21. That sounds pretty good. His appetite has gone down, but for the past year he has been trying to lose weight, so it could be that he is just cutting back. His only real side effect is he seems to need more sleep. Usually in bed by 9:30 and awake around 7:30. He always had a very physically demanding job, so he stays pretty active most days. Goes to the gym 3 days a week for an hour and tries to walk the other 2, plus loves to work in the yard, so some days spends hours out there. His feet are still somewhat numb from the taxotere, but he just keeps going! He is a strong believer in the Pom juice, so has a glass of that every evening, but now I see on another thread that you shouldn't drink it if you are on a statin, so may need to look into that! So, overall, he is doing very well. I do have a question, how often is everyone getting scans done? His doctor hasn't said anything about having another and his last one was, I believe, 6 months ago. He has a great oncologist, but he isn't very free with information!

Smo1, glad for your contribution. It's encouraging. Can you give us his path to Xtandi? Anything besides Taxotere? Mine husband's fatigue is quite pronounced at times. As I have said before, don't know what's the Xtandi, the cancer, or the infection he seems to be fighting.

Some similarities on last part of journey. Sorry, I didn't answer scan question. Maybe a request before your appointment for a scan, but at least at the March appointment. Our new Dr. seemed less interested in full scans as we have had before, but you're question is triggering me to clarify the scan question. We also were getting them every three months. Last had full scan in August and just a CT of middle body in January.

It's actually 160 and not good - doubled again. Trying not to panic, maybe bump with Xtandi - can always hope. Profile cut it off. Will have to check profile again, tried to correct it.

Passages, I kind of expect to see a similar result on Monday. I don't know why. PSA currently 97. We would love it if there was no change!
I know the pulling answers syndrome. We need to be organized and make every moment we have with the doctor count. And we will.
tednsal - always looking and researching. And this board is the best as far as alerting to new treatments.
I have a feeling I'll be starting a new thread after our visit on Monday.
Best to all!

Just checking in with everyone.....want to know how all of you all are doing?

We have gotten back from our RV trip to HHI, S.C.. Husband seemed to be getting his strength back, hair coming back, but this week his strength is starting to "wain". Had his Xgeva injection last week and then the Trelstar this week. I remember one of you all said that by the third month on Xtandi, fatigue started to set back in while on Xtandi. Husband has not had any nausea, but stiffness in back and joints more pronounced lately. Continued pain in ribs, clavicle and back, especially with sudden movements (laying down in bed or getting up out of the recliner). Bone & CT scheduled sometime the first of May. We have the RV up for sale and have prospective buyers coming next week, I am so sad that this chapter of our life is coming to a close due to husbands deteriorating health, but we are starting on another chapter...trying to "beat this beast".

Want to know how all of you guys are doing: Passages, nhwife, gunfighter, smo1, raddad, speciallady, littlenm. lietde....

Prayers, good thoughts sent to you all..........

Tednsal,
Thanks for asking! Two months in on Xtandi. See Dr. Tuesday. He's still gets quite fatigued, so often it overlaps with a fever. Can't seem to get a feel or theory on the temperatures . 102+ today from afternoon on until just a bit ago. down to 101+ just now.

Spent morning doing scout teaching, but said he felt fine than; and than home to bed. Still hoping Xtandi is working and se will decrease and all se medicine related.

Sorry chinking, but remember everyone is different and their reaction and the efficacy of the treatments vary widely. You need to note that we've been on this path a long time, so our path is not yours.

Meant no se on Zytiga, Xtandi has been more difficult.