Diagnosed 1999, update

[chascri]

A summary of my prostate cancer diagnosis and treatments appears in my profile. I was diagnosed in 1999, age 56, now age 75.

I have been on Xtandi since August 2017. PSA is now stable at 1.8. No new metastasis. Xtandi seems to be working very well. Main issues now, are stomach pain, bloating, constipation, fatigue, lack of energy and limitation of mobility. The stomach pain bloating and constipation are controlled by simethicone tablets, stool softener and movantik tablets.

Since my falls and spinal and rib fractures in January 2017 and March 2018 my mobility and activities are greatly limited. I can only walk or stand for about 5 to 10 minutes at a time. I am able to walk around the house without a walker. The fractures in my spine are inoperable I must wear a back brace for activities outside of the house. I can I sit in a straight back chair for more than about 30 minutes without the pain increasing in my back and ribs. I sleep without my backbrace about 10 hours a night in an adjustable bed on my back with about a 30° Incline. During the day, I am able to walk around in the house without a walker or backbrace, shower every few days and spend most days in a recliner watching tv, reading, and on my computer. Are usually nap for an hour or two every day in the afternoon.

Since my second fall in March 2018 I have been on a 72 hour,75 MCG fentanyl patch for pain in the back and ribs. The fentanyl patches keeps my pain level at about three or four. For breakthrough pain I use 2 milligram hydromorphone tablets as needed. These are seldom needed unless I stand or walk too long or overdo it in other activities. Because of the fractures in my back I cannot lift over 5lbs per doctors orders. I can still drive but limit myself to short drives around town or the doctors office.

Quality of life has gone down considerably since my falls in 2017 and 2018 mainly because of the increased pain and limitation of activities. I just spent the holidays with family and grandkids and had a great time. Plan is to continue Xtandi and Lupron shots every six months as long as my PSA stays stable and there is no objective evidence of new metastasis.

I hope this is helpful to everyone about what to expect in the future after diagnosis and treatment. Diagnosis with prostate cancer it’s not necessarily a death sentence. It’s not a cakewalk, but in most cases with proper treatment you will most likely live many more years with a decent quality of life.

Happy New Year’s and best wishes to all and may the force be with you.

[Lyubov]

Thank you for sharing & for your overall optimism. It does give hope for the future, knowing it's not a "cakewalk," but "staying alive" is worth it.

[Grumpyswife]

Thanks for the nice summary. My husband is 75, too, and using Xtandi since 2/2018. He went to half dose due to fall and SEs. Are you on full dose?

Xtandi has aged my husband but mostly from weakened muscle. He has no bone Mets yet per recent Axumin scan. Your PSA is lower than his.

[chascri in reply to Grumpyswife]

Yes. 4 capsules nightly at bed time with a full glass of water. I think the main side effect for me from the Xtandi has been the extreme fatigue and lack of energy. Of course I know that some of the fatigue and lack of energy is a result of the low testosterone caused by the Lupron shots. Good luck to you both and happy New Year.

[Break60]

Amazing journey and long life considering your prognosis. God bless and thank you for the inspiration.

[j-o-h-n]

Thank you for your thoughtful and enlightening post. Could you tell us about your falls? We all hope you live another 20 years and enjoy your family and grandchildren. Who knows you may even be able to dance at your grandchildren's weddings. Stay well and a Happy New Year to you and your family.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 01/09/2019 2:16 PM EST

[chascri in reply to j-o-h-n]

The falls were stupid accidents. In January 2017 a chair I was sitting in fell over backwards as I was getting out it. The fall fractured two thoracic vertebrae. By July the two vertebrae compressed. In March of 2018 I leaned over a sofa to pull a curtain closed to block the sun. As I backed away I caught my heel on a rug and fell over backwards onto the edge of a coffee table fracturing two more thoracic vertebrae and a couple of ribs. Prior to the 2017 fall I played golf and bocce regularly, but it ended the golf. The 2018 fall ended the bocce and resulted in the backbrace and needing a walker. Needless to say quality of life has gone down considerably since January of 2017. I have managed to playbocce a couple of times last fall wearing the backbrace and using my walker with the help of team mates. Thanks for the good wishes.

[j-o-h-n in reply to chascri]

Thank you for your reply. I asked about your falls since I'm losing my balance and catching myself before I actually fall and break my bones. Since you're a bocce player there was a famous bowler: Lou Campi (1905-1989) a professional bowler. He was known as Wrong Foot Louie who was born in Verona, Italy. He was right handed and used to end up with his right foot in front (instead of his left foot) from his days as a great bocce player.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/10/2019 11:58 AM EST

[monte1111]

You have certainly been on this journey a long time. I am almost at the 2 year marker. Had T-12 compression fracture and just hated the $1000 back brace. Bought one of those stretch back supports for $6 at a discount store and found it very useful. Don't need the brace anymore but like you am very careful about lifting and walking. We started Xtandi at the same time. Let's hope we both have a nice good run on it. Happy New Year and it sounds like you are The Force.

[Beermaker]

Super-Congratulations on surviving so long with this horrible disease. (I am 7 years out now.) Since you are on Lupron (I am on Trelstar) have you had a Dexa scan to check bone densities? I have had a few, and found my osteopenia went away when I started to use Prolia to strengthen my bones. A few falls since than, but nothing broken. I can attest to good bones after about 5 years of Prolia, with no known negative effects. I recommend talking to your oncologist about it.

As far as the pain goes, you might care to look into Medical Marijuana (MMJ) as it eases pain and helps with sleep. At least it helps me, and it is legal but expensive here in Florida. I had some back pains while sleeping on my side, and they went away after starting on MMJ. Now they are back during the day, especially when I try to stand up. I do not want to medicate with MMJ during the day - too many fun things to do! But it sure helps me at night.

Did you try Ginseng? If so, how did it go? Very curious on that.

Be careful walking, make sure you have good lighting. I am hoping you can get another 20 years!

Beerman / Marshall

[chascri in reply to Beermaker]

Bone density studies prior to the falls were all normal. I haven’t tried marijuana or ginseng. The fentanyl patches and Hydromorphone tablets for break through pain have worked pretty good.