I'm new here but read the posts all t... - Advanced Prostate...

Advanced Prostate Cancer

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I'm new here but read the posts all the time

prettypatricia68 profile image

My husband was diagnosed in May of 2018 with metastis to the bone. He was on zytiga with great response to it but his liver said no so he is now on xtandi. I'm guessing it is normal to have a hard time enjoying food ,everything tastes like metal, some foods worse then others. The really odd thing now is his belly looks like he is 8 months pregnant, very uncomfortable ! He is taking gas x and tums, nothing seems to help, has anyone had the same problem? Going to oncologist on Wednesday, will ask if normal and if not, what do we do now. Thanks for listening.

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prettypatricia68 profile image
prettypatricia68
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22 Replies
rptrma profile image
rptrma

How long into PS is he? Surely you did not first discover this after bone mets had occurred. I am 9 years into PS and have been thru all that entails and now up to Chemo. I would be happy to share all I did to live so long...and it's been a lot.

prettypatricia68 profile image
prettypatricia68 in reply torptrma

I'm confused at your response, his stomach blew up since he's on xtandi, is this common from that medicine.

Magnus1964 profile image
Magnus1964

I experience the gas also. Since I went on xtandi I chew GasX like candy. Have your husband try charcoal pills. I have had some luck with it.

prettypatricia68 profile image
prettypatricia68 in reply toMagnus1964

Hi Magnus, thank you for your response but they say the charcoal pills can absorb the meds so we are hesitant to do that but he does have the gas x, maybe he should take more. Did your stomach blow up like his(8 months pregnant look)?

Magnus1964 profile image
Magnus1964 in reply toprettypatricia68

I have not heard that charcoal pills absorb meds. I will have to consult with my research doctor. My belly is distended, my doctor says it is because I have lost muscle mass from being on ADT drugs. I peddle on an elliptical for a half hour daily but I still can't lose it. It does keep my weight down.

prettypatricia68 profile image
prettypatricia68 in reply toMagnus1964

I'll try and find out wed. When we go to the oncologist to see if there are any tricks to take care of it.I'll let you know.

Magnus1964 profile image
Magnus1964 in reply toprettypatricia68

Great, I'll ask Thursday. I am wondering, I don't take the charcoal pills "with" xtandi only when I go out. Hopefully the xtandi has been absorbed into my bloodstream .

prettypatricia68 profile image
prettypatricia68 in reply toMagnus1964

Went to the oncologist this morning he said he wants to see what's going on in his belly, ordered a cat scan for tomorrow for stomach,chest and pelvis. Hopefully it is something very easy to take care of. Fingers crossed

Magnus1964 profile image
Magnus1964 in reply toprettypatricia68

My research doctor didn't know, he never heard of taking charcoal for gas. He said older have slower metabolisms so take the charcoal 2 hours before or after xtandi or any medication.

snoraste profile image
snoraste

Once on ADT, patients will store a lot of "belly fat" in the lower abdominals, and tend to lose bone density and muscle mass. Exercise and diet are the only weapons against it. In my opinion they should be prescribed by your doctor as part of your daily routine. He needs to do cardio and light weight training to battle both. There are videos of the exercise examples online if you search. Same with diet. You have a very thin margin of errors now when it comes to weight gain/muscle mass loss. So have a sensible regiment and stick to it.

I had liver "flare" with Zytiga as well. It is common. One study showed that people who have it tend to respond better to it. The solution was to stay off of it for two weeks, and re-introduce in lower dosage and increase to full amount over a month. I'm surprised you were taken off of it right away. I have been taking Milk Thisle which also helps with liver enzymes.

Sorry I don't have any answer for you on the gas issue.

prettypatricia68 profile image
prettypatricia68 in reply tosnoraste

He wasn't taken off it right away,they did lower the dose from 4 to 3 then 3 to 2 then off for a week and back on with 2 but liver wasn't having it. Then xtandi and this seems ok.

larry_dammit profile image
larry_dammit

Been on Xtandi now for 28 months, yes gas is a issue here, tummy gain also but not bad. I have gained some weight due to diet. When I was on prednisone everything tasted awful but once off it taste came back for the most part. Doctor have me on a ant acid to help with gas . Good luck with the monster 🙏🙏🙏

prettypatricia68 profile image
prettypatricia68 in reply tolarry_dammit

Thanks for the luck.

Break60 profile image
Break60

My urologist recommendation was beano for bloating.

prettypatricia68 profile image
prettypatricia68 in reply toBreak60

Tried that, thanks.

CalBear74 profile image
CalBear74

I was reading once again AKM Shamsuddin's (MD, Ph.D.) book on his cancer research last night and noted his trips to China for consulting on their widespread liver cancer problems. His experience in the successful use of IP-6 as a liver cancer treatment caused his trips in the nineties to bring Chinese physicians up to speed on using IP-6 in their medicine, which is certainly ironic as Shamsuddin was born in Bangladesh and understands Eastern Medicine, though he is a western allopathic MD-professor from the University of Maryland Medical School.

amazon.com/IP6-Inositol-Nat...

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healthunlocked.com/advanced...

BTW, my little Hansel would love an introduction to Patricia, but alas, some things are never meant to be.

Good luck,

CalBear74

prettypatricia68 profile image
prettypatricia68

Thanks for the info and hi to calbear

Okayjan profile image
Okayjan

Get you and your husband to a gym and spend time there exercising the waistline away. As a wife I read these posts, understand the fat in the middle issues, the medications change his metabolism. I started going myself as a stress reliever and soon hubby followed, now spending 2-3 hours a day at the gym. I admit I took advantage of a rainy day opportunity. He has the cancer, but you have a chance to lead him down a healthy path. My husband is lucky with G3+4, radiation and lupron. He may be able to beat this, we’ve traded sex for exercise, lol. Temporarily we hope. At any rate I share this because it will help give him a chance to get a little bit of control back on his side. You can do this! Check out the Silver Sneakers website, and your secondary health insurance may cover your gym membership.

monte1111 profile image
monte1111

On Xtandi 19 months. Lupron 24 months. Other assorted meds. Have a definite Homer Simpson profile now. Should be due any time. Have developed a serious gas problem that seems to come and go. Mostly come now. I know someone will scream, but I think bread, pasta, popcorn and other ugly diet choices might help. Gas-X did nothing. The cats look at me like "Really, Dude?" Reminds me of when my wife was pregnant.

prettypatricia68 profile image
prettypatricia68 in reply tomonte1111

I hope that's all it is, going tomorrow for ct scans to find out more. My husband liked that info !

j-o-h-n profile image
j-o-h-n

Greetings.

Please tell us more about your husband. age? location? treatment center? doctors? All info voluntary but it helps us help you and helps us too. If you will provide info do it on a future post and don't respond to me. Thank you...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/10/2019 7:09 PM EDT

prettypatricia68 profile image
prettypatricia68

I should have given more info to give you a better profile of my husband, he was diagnosed a year ago in May, he will be 70 this may. We are going to Hackensack university hospital in Hackensack nj cancer center also affiliated with Sloan Kettering. His doctor is Robert Alter, he spacializes in prostate cancer. He also treated me for breast and bladder cancer 14 years ago and I am strong and healthy now. Have great faith in the center and doctors.

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