Winmui, I'm so sorry that you are going through all this pain and suffering. Having just gone through all this with my husband I know exactly where you're at. It is not an easy road for sure. I too...
Winmui, My husband was on Zytiga before he started XL184. Actually he had no response to Zytiga but had a better response to XL184 for approximately 8 months. He had major weight loss during the time...
Sally, I have not posted on HW for a very long time. Since that time my husband Bob passed away after a 5 1/2 year battle. Although I've been told never to look back at the choices we made, I...
Ksalmon, My husband was on 40 mgs. of Cometriq once a day for 8 months. Most of his side effects were GI related, vomiting, nausea and a 40 lb. weight loss. The good thing was that the Cometriq took...
Pat, Just saw that your husband passed away. I am so sorry for your loss. My heart goes out to you. May you find the strength, peace and courage to forge ahead. And yes, there will be a cure someday....
My husband has been on Xtandi for two months now. It's very difficult to know what side effects are from the Xtandi since his disease is very advanced. He does not have any swelling in his legs...
My husband's scans after Cometriq showed a dramatic reduction in tumor size and his blood work was much improved, unfortunately is was short lived - 8 months. Not too sure what the Xofigo/Xtandi...
Cabozantinib can be prescribed off trial. If it's prescribed this way you may not need his Hgb. to be elevated. That is how it was given to my husband. Chris...
Ann, My husband needed his Hgb at 10 to receive Xofigo. He was at 8.9 so he was given a unit of blood and it went up to 10.2. Each trial has it's own set of rules as we found out from being on...
I keep a commode at the bedside too....
Susan, If the problem continues there is something called a Texas catheter. It resembles a condom, is non invasive like the catheter that is inserted into the penis. It can be put on and off as much...
Gary, Some Oncologists are giving Xofigo (Radium 223) as a combined therapy with either Zytiga or Xtandi. Lupron or Zolodex is given as well. My husband is on the above treatment with Xtandi but I...
Jitters, Thanks so much for the update. Sounds like you had your hands full with the passing of your friends daughter. So kind of you to help and do so much for your friend when you are still dealing...
Dreamer44, Thinking about you and hoping your day was peaceful. I know your hands are full but please know that you are both in my thoughts and prayers. Chris...
We are waiting for pre-approval on Xtandi. Will see how that goes. Hopefully it's as painless as the Cometriq....
Pat, I remember the days when I would follow the PSA so closely and now I don't even pay much attention to it. Most of the focus is on pain relief now. Boy, how things have changed. Did Mark get any...
Allen, Our insurance picked up the cost. It was $11,000/month. Zimac (Chris)...
Jerry L, Yes, it was prescribed for my husband's prostate cancer. He was not in any clinical trials. Our Oncologist called in a prescription for the Cabozantinib and it was delivered to our door in 2...
Ladies, I have been MIA from the forum for quite some time but for those of you who remember, Bob is still here fighting. Right now we are starting a new regimen of Xofigo/Xtandi combination therapy...
Ann, My husband was on Cometriq for almost a year. It worked wonders with his pain and kept his scans in check. PSA came down slowly but was always headed in the right direction. I'd say the biggest...
Nhwife, Let the tears flow out to make room for a peaceful and beautiful tomorrow. Wishing you a day of fond memories, laughter and love. Zimac...
Susan, I can certainly understand about weight loss. It's so easy to drop a few pounds and so difficult to put it back on. I looked at my husband today and noticed his new clothes were already loose...
As some of you may remember, my husband has had a long and difficult journey, the latest one being two brain lesions which required two craniotomies. He was on oxycodone every four hours from January...
Sally, Haven't received the email yet. Cathy, Certainly understand the drained feeling. I hope that you receive some good results from the Xtandi. Maybe we can finally start an upbeat thread this...
Perfect. I'm leaving for a 6 o'clock yoga class. Will respond tonight....
tednsal, I'm still around. My daughter just got married last Saturday so I've been a little busy. I have kept myself in the background because I was getting depressed with all the bad news. I think I...
Now that is news we all like to hear. Terrific job Todd. Keep it up. Zimac...
Hi Ladies, Just started to read all your posts (Passages, Jitter99, Nhwife) as I haven't been on HW much. It's so good to know that all you ladies are still here. I think about all of you often. As...
Lydialynn, Just to give you a little more hope - The whole brain radiation wasn't as bad as it sounds. After my husband's last WBR treatment we went to the airport and hopped on a plane to attend my...
Lidialynn, So sorry to read your post. I believe my husband is running the exact same course as yours only his journey started in 2008 at the age of 56 with a PSA of 6.2. He has mets in the bone,...
Dreamer, There are lots of clinical trials out there to try. My husband has been on two and did very well. The way I look at it, it gave him an extra 2 years If Mark is feeling great, I'd give it a...
Todd, There is also an all natural sleeping aid called Theanine if you want to stay away from the stronger medications. Zimac...
Enjoylife, As everyone has already said, this is the place to be for knowledge, love and support. Great group of guys and gals here to listen and comfort when you need it the most. I haven't been on...
Beautiful poem. This has been a really tough year. Too many men lost to such a horrific disease. Maybe one day soon there will be a cure, I pray. Zimac...
Nhwife, My heart is very heavy with sadness but relieved that Ed is at peace. May you find comfort knowing you stood by your man. All my love, Zimac...
Nhwife, It has been such a terrible year. We have lost so many good men to this horrific disease. You have done everything you could do for Ed. May the quiet time now be spent with beautiful memories...
Discouragedgirl, You remind me of my daughter. The love you have for your Dad will get him through this. First let me say that my husband was diagnosed with advanced disease back in 2008. We have...
Tednsal, I am still here tending to the many chores that PCA hands out. Since Bob is holding his own at the current time, I'm trying to make the best out of life as I know one day it will end. After...
Gman, The surgery my friend had was done robotically. When my husband was a patient at Memorial Sloan Kettering back in 2008, the patient next to him in his room had Dr. Eastham perform his robotic...
Gman874- Have a friend who used Eastham a few months back. He had a few complications but end result is a Zero PSA. Good luck!...
Passages, This is such a difficult time for you but I hope you find peace and comfort knowing he is in God's hands. I too dreaded coming to the HW site as it's been a horrific year for so many of us....
Hi Everybody, We are still here fighting the good fight. The road is tough and everyday is a battle but we are doing our best. Bob is holding his own after all the brain surgeries, whole brain...
Passages, So far so good. He is not having any pain and has not needed any pain medication since he started the Cometriq. Would be nice if we could get this to last awhile. Time will tell. How are...
Glad you're making the best out of the situation. Off to a concert in Vegas afterwards - priceless. Enjoy your time away. Zimac...
Judy, May you find peace, strength and courage to forge ahead. Find some comfort in knowing how much you both loved each other. My heart goes out to you during this most difficult time. Zimac...
Dreamer, It's difficult for us to decipher what SE are from the brain surgery or from the brain radiation. He has some balance issues, probably from the two surgeries. Guess it really doesn't matter...
Bjnemo, May you find strength, courage, and peace during this most difficult time. I am so sorry about your Gene. I will keep you both in my thoughts and prayers. Surrounded by family - how...
Dreamer, Was wondering when the brain radiation was started? My husband had brain radiation in February of this year. Just wanted to compare notes with you as there aren't many on this site who have...
Tednsal, I know how difficult things can get at times both physically and emotionally. If you need an ear, email me and I will give you my phone number so we can chat. Sometimes I find it easier to...
Sorry that you felt a little lonesome the last few days. I was just able to catch my breath from all the scans and doctors appointments. Our lives have become one doctors appointment after another....