Help! Advice, anything. Xtandi, Zometa What's next?

Jitters - I am truly hoping for the best for your results today. I can't believe with everything that you are going through, you were able to to pull off the fundraiser. Well done!

Passages - How do you do it????? Take your husband for chemo in between taking granddaughter to and from nursery school. You have more internal fortitude than I do.

NHWife - We are getting scans on the same day I think. I will be thinking about you throughout. I am glad that he has had a couple of good days. I am not sure about your husband but mine does not do scans well. If he were having a bad day....that would be even worse

OK - Let's all have a happy, comfortable weekend....Deal??

Hi Passages

Been reading through your post and thought I'd tell you what has and hasn't worked with my husband (he's at a similar stage to yours, I think)

After having been on Xtandi for a mere four weeks, his psa shot up from 250 - 475! He was also not eating, loosing weight and feeling extremely miserable. I honestly thought that this was a downward spiral we would never recover from.

He was prescribed a steroid called Dexamethasone for his appetite - and it has worked wonders. From being unable to eat a single bowl of cereal, his appetite is now fully restored. It makes such a difference to everything!

He too has constipation (due, we are lead to believe, by the morphine he is taking for pain control) , and has been taken a (pretty vile) medication called Laxido. It seems to be helping.

His last psa reading was very unexpected. Four weeks after the huge rise, it has now gone down to 226!! His doctor believes that the Xtandi (for some reason) can cause the psa to rise dramatcially before it falls.

He also believes that a lot of hubby's symptoms were caused by his body adjusting to the Xtandi, and indeed, he seems a lot better now than he has in a long time.

Things aren't perfect. He is still in a lot of pain, for which the morphine offers limited help, but he seems to have some of his lust for life back - especially now he is eating again.

I hope this helps in some way - sending you love and hugs

MRI results for hubby were negative, no cancer in the brain, some lesions in skull. Big sigh of relief there.
Decision was made after a very lengthy conversation of questions and answers, that it appears the Radium 223 is no longer working after only 2 treatments, this was expected as nothing has worked longer than 2 months. His pain as increased severely but nausea is not as bad. Over last week needed to increase pain patch from 25 to 50 mg and now add back dilaudid break thru med every 4-6 hours. Lost more weight and very weak, needs help turning over in bed, getting out of recliner and legs are giving out while walking. Dr said his next option is trial of XL184 vs mitoxantrone plus prednisone, not knowing what or if you get it or Jevtana and he recommends XL184. He then added, lets back up, we need to discuss you are at hospice stage, there is nothing that will ever get rid of all or even some of your cancer, but I feel you owe it to yourself to still fight like you have been if only for 2 months of pain relief, IF it works, of course depending on SE and quality of life concerns. We asked about any travel to see kids back east for a week, he said NO you are 2 weak,but that is only my opinion, and your blood work is dropping in numbers, anemia etc but if you do the trial I can do meds to help with blood counts. We left with consent forms to read.....no radium injection, lots of pain in back and legs, and stronger script meds. He is suppose to return for three separate visits next week for all kinds of scans and X-rays to see if he qualifies for trial, most specially blood numbers cannot drop one point or he's out and heart has to be at optimum pumping because of damage that can be caused by treatment. He had triple bypass 4 yrs ago this August, but so far no issues to heart from other treatments that we know of.
We are BOTH so torn as what to do. It is his decision and I am there for whatever decision he makes, it's just so very hard to discuss. Last night he said let's just pack our bags head back east and it will be what it is suppose to be...if I make it back here in a week or 2 and the trial is still open and I am healthy enough to be in it I will, or I may just enter hospice back there and take each day as it comes. I told him he can also take the entire week to think about it, do the tests,see if he even qualifies, doesn't mean he HAS to enter the trial, there is still ONE more week of nothing but phone calls every day to discuss pain meds and amount of pain he is having before they even start the trial. Pain has to be at a certain level and if you miss one call in you are out of trial. SO MUCH FOR ONE SICK PERSON TO DIGEST IN A WEEKEND LET ALONE A WEEK.
darn it I hate this....he's so confused and to top it off chemo brain has taken its toll on his brain too, besides the pain meds.

Jitters, don't know what to say. My heart breaks for you and yours. I believe they just get so tired of the pain and the never ending testing that takes so much out of them. If he feels he wants to go out east first and he thinks he has the strength to do it I would go with his feeling. I know we want to try everything possible to hopefully get more time but maybe for him going back to see family is the most important thing to him right now. The tests and trials will still be there when you get back. I know how hard it is but now is the time to let him get his thoughts out, I wonder if he is afraid if he doesn't go now that he may not be able to later. Hugs to both of you, hold each other close.

Jitters, I don't know what to say but the words of Silverlace seem true. It's really a case of no right or wrong path. You do what you do and no regrets either way. What you choose will be the right path.
Thank you, Passages, for your thought. Hitting bottom is no fun but I think it's good to get it out. I too haven't cried a lot, been holding in and knowing if I even get close, there's no stopping.
Our appt is now tomorrow. This will be a hard day as that looms. I know he is worried, scared. I keep telling him we will have a plan after tomorrow, no matter what it is.
Ah but it is so hard to keep going. Passages, what you said about treatments not working beyond a couple of months, seems to be our case too. The last thing that worked was the keto, almost two years ago.
I guess we'll know tomorrow about the zytiga.
Big hugs to Passages and Jitters, my sisters in these journey and to everyone. This is nasty business.

Jitters - my heart goes out to you. I agree with NHWife. There is no right or wrong path and whichever you choose will bet the correct one but I do have this thought running through my head. When my husband was diagnosed, we promised we were going to live each and every day and do whatever we wanted. See things, do things, spend time with people we want to see. This may be exactly what your husband wants to do right now. darn the Torpedos - full speed ahead. Good luck with either choice

Passages - Go ahead and cry. I know you probably don't want your husband to see you cry nor kids as you are their rock of Gilbraltar. I find the bath tub to be a perfect place. Tears are lost in the bath water.

Hugs for all .......and all for hugs

Nancy

Jitters, Continued thoughts, especially with decisions. The way you present the east coast situation, it sounds awfully good. I just mentioned this to Zimac, but there is something before hospice that a few agencies are doing - palliative care. They come to you, where ever you are. You can get help with cleaning or care or be a liaison with doctors, if you need attention or response on weekends, nights, etc. just a thought to throw out there. It's been in hospitals, but this is at home.

Jitters, Passages, all. It was a hard appt. The zytiga isn't working: tumors larger, higher PSA. But we came out with a plan.
Next week we meet with a radiologist oncologist to discuss targetted radiation to see if we can reduce the tumors to help with the pain. Following that we are considering Jevtana. Well that's all there is right now.
Provenge is not an option as my husband's cancer is quite advanced and symptomatic now. We learned of more lymph nodes in the chest area today.
The doctor also gave more pain meds so that is good too.
We are reeling but we just talked and said this is like hearing the news for the first time. And what did we do then? We went on with our lives so we will.
My husband did ask about quality of life and the doctor did talk about that. She also did confer with our doctor at Dana Farber and right now he knows of no trials for someone in my husband's progression.
So please let us continue to support each other in this yet again new normal for us.
We did not ask how long or what's next after.
The tears have been flowing today. I think of you all and know we aren't alone. I wish none of us were in this situation but it comforts me to know we are not alone.

Nhwife, so sorry to hear your news. We also looked in the cyberknife for spine mets, but found out he had way too many and it was not an option.
We have talked and cried together and decided that we will be heading east and enter hospice there. We have been receiving palliative care. When I first asked about it, our oncologist said, every cancer patient should be receiving palliative care if they have the right doctor, palliative care is making you and your loved ones comfortable with each and every treatment you received...in the beginning or at the end, and I believe we have. The hardest part was telling our west coast family we would be leaving for hospice on the east coast. No matter which direction we go, one is hurt more than the other,but both want what's best for both of us, and when the end is near, everyone will be there beside him if timing makes that possible. I am staying as strong as possible, crying off and on, but getting things in order. Daughter in CT has already found that one of her clients runs one of two hospices close to us, they have given us a list of necessary things to do here before we leave and they will meet with us the day after we arrive to start setup. Tonight at dinner my husband said..as stupid as this sounds , knowing what is ahead of me in CT, I am so excited to go east...now I know in my heart we made the right decision, and the doctor here seems to agree. Will keep everyone updated..

My heart is with you. The last 24 hours have been the hardest thus far. My guy is two days into palliative radiation for pain. He has been in excruiating pain. Worse than at anytime. He is not eating much and they have tripled the dose of morphine. We went to the cancer center today for his treatment, and the machine went down. He left without treatment. I am so tired as I am only getting snippets of sleep. I can't even cry anymore. What is there to do? I am hopeful the radiation helps, but his numbers are rising, and I am not sure what comes next. It is hard to see your man slipping away, and in so much pain.

I send prayers to all.

Susan

Hello my friends "PC Warriors".....jitters99, passages and nhwife and any others that I may not have mentioned......
What can I say to you all...but that my stomach is in my chest with all of your developments as of late. But try to "keep the faith" if but for "your guy". Gosh I know it's hard....to continue smiling when you are screaming and crying inside....we live in three month increments...waiting for the results of the next scan or PSA numbers. I will say a prayer for each of you as I lay my head down tonight...I always have you all in my thoughts....hoping that you have someone close by to help you "cope"....
We are in a "holding pattern" since off taxotere and on Xtandi...PSA not rising went down just a little...husband still week and has pain in chest and back with sudden movements....hurts to walk long distances....appetite somewhat suppressed. Our scans are scheduled for late May and I expect this one will be worse than the last because of his discomfort levels, I know that the cancer is growing. I try to continue to act normal, raked leaves this afternoon and he came out to take the wheel barrel with the bagged leaves to the road. He so much wants to continue doing the "man stuff"...even when he's not able...
I will be following in your foot prints as time passes....don't know how long it will be, hoping that we have a couple more years, but you never know with this "monster"....
I would like to ask a question though...taxotere verses jevtans? Oncologist said husband will not have taxotere again..didn't have time to ask why...anyone knows why or would he be given jevtana instead?

Thank you all for your messages. This is a hard path.

LuAn (jitters) - you both must be feeling good that a decision is made. Safe travels to you both and keep us posted.

Nancy (littlenm) - your words are all I need. Thank you.

Susan (radsgrrl22) - I feel for you so much. It is hard.

tednsal - I hope you have many many more years. But I see by your signature how many have already been with this beast. Similar to us, our journey began in 2002. I really hope good results with the xtandi. As to the taxotere/jevtana question, our doctor explained it yesterday and I don't think I caught it all, i was in such shock. But basically the body gets taxotere resistant. Jevtana is a chemo but a different strain. It is harder on the body, more room for SEs but the doctor did say that just because you had no results from taxotere didn't mean the same for jevtana. So that is why it is being used as a different and next treatment.

A new morning brings a new day and we are both feeling a bit stronger and more ready for what is ahead. I do like our doctor. I like that she called yesterday, I like how she calmly and honestly explains everything. I was crying hard yesterday and the more she talked, the more I calmed down.

We hope the target radiation takes away the discomfort. That would be good. That's as far as we are going right now.

In closing, let me share my brother's words with you all. He has been through this with his wife dying from pancreatic:

"Swallow hard, breathe deeply, hold each other closely, and wait for another day of yours, tomorrow."