Endoscopy results and more tests to come

[SGHSweethearts]

Hello everyone,

Some of Marks endoscopy results came back. He has Barrett’s esophogus which is a pre-cancerous condition. (He was supposed to have a resection of his esophogus years ago, but he didn’t want to do it) and a Hiatal Hernia. They found a strange mucous that they are not sure what it is, and a lot of acid in his esophogus and stomach. The whole area looks like raw hamburger. At least we have part of the answer why he Hs been losing so much weight and vomiting. They upped him to 80 mg of prednisone to try and get the inflammation down and hopefully to slow down some of the acid so the esophogus and stomach can heal. He cannot get the Opdivo while he is on such a high dose of steroids. A catch 22 right now. It’s really hard for Mark to come off the steroids. And the Dr wants him to taper very slow because of the condition of his inside tissue . I worry about him going without treatment for too long. He has it every 2 wks and he is going to miss at least 2 months of treatments. I pray, as the Dr does that this all heals and he doesn’t have to miss any more treatments. They are still waiting on some other stains and biopsies they said could be another 2 weeks. At least he has been feeling better and able to eat again.😄 Grateful for every day we are blessed with. We are looking forward to a nice weekend, going to the Angeles Baseball game tomorrow, and to Universal Studios on Sunday. Blessings for all, and pray you have a nice, peaceful weekend. I will let you know when we have the rest of the results.

Michele

[missyrand Ambassador]

Michele,

This is a good reminder to all of us that we need to take care of our whole body, our whole mind, and whole spirit.

Have a wonderful time

missy

[doulagirl]

Michele,

I am glad you now have some more understanding about your husbands weight loss, even though that must have come with mixed feelings about the prednisone and being off the Opdivo temporarily. My husband has been on 80mg prednisone the last month and had to stop receiving the nivolumab (Opdivo). So we asked our oncologist the same question you must have asked, about how an immunosuppressant drug like Prednisone affects the immunotherapy treatment, my feeling was that we were trying to boost on one side and suppress on the other. So his answer was that they have seen that eventhough the drug was not being administered, it was still working in the body. And that we could choose to go back on it after the side affects were resolved. Are they considering this a side affect of the nivolumab? Also, did they give any other tips to help heal the stomach lining ? I'm thinking food wise maybe. Hope you had a wonderfull weekend!

Dorothe

[SGHSweethearts in reply to doulagirl]

Hello Dorothe,

My husband Mark has started to slowly taper 10 mg a week off the prednisone this week. Previously he did ok until he reached between 10-20 mg. Then it was a real struggle, but we are praying he can do it. Yes, we are hoping to go back on the Opdivo again when he can get his steroids down. We are waiting on results from a few more tests which we should have in 2 more weeks, but the Dr’s original thoughts is that his esophogus & Stomach problems could be caused by the Opdivo. It is not a common side effect, they said to us that diarrhea is the most common one, but it could be. My husband really hasn’t eaten spicy foods for years, or eating late. He could eat healthier, but that is an ongoing battle I sometimes have to back away from. Especially when he can’t eat at all they LN I tend to want him to have anything he wants at all just to eat. He has been on Opdivo for 20 months and for the last 17 months he has been doing pretty well so I pray that he doesn’t have to stop. My husband is getting tired of all this. He is starting to tell me things that he wants to do before he dies. I really can’t imagine how I would handle all this if it were me, but I’m not letting him give up. Sometimes I think I push a little too hard, and then we need a little space from each other to regroup😩 I try to keep his spirits up, always coming up with something to do. We went to the Angels Baseball game this weekend and saw Mike Trout hit a grandslam⚾️👏👏, and went to Universal Studios today, my husband was so excited to finally see Harry Potter Land. It was an exhausting weekend for him, but such a good distraction for a while. Tomorrow is a new day. I pray everything is going ok with your husband and with all the people on this site. Talking here has helped me so much🙏🏻

Michele

[doulagirl in reply to SGHSweethearts]

Michele,

I really hear you and relate to what you were saying about pushing it and keeping his spirits up. We really don't know how it feels to be them, we know how we feel as caregivers though. Important to recognise the feelings of both. My husband Frans is on 20mg now and will be taking the next taper step this week, we'll see how that goes.

Sending good vibrations to you all <3

Dorothe

[SGHSweethearts in reply to doulagirl]

Doulagirl, thank you. I have been thinking about your husband, Was he able to come off the steroids? My husband is down to 40mg, and so far so good. I will continue to pray for you both. Have a Blessed Easter

Michele

[doulagirl in reply to SGHSweethearts]

Michelle,

So glad your husband is already on 40mg, that is an important step.

Here we are on 10mg this week and hopefully 5 mg next week. Last time they had him go from 10 to 0 and that didn't go well, so we are taking smaller steps now.

A Blessed Easter for you!

Dorothe

[SGHSweethearts in reply to doulagirl]

Dorothe, oh I know. My husband can’t go from 10 to 0 either we go super slow when we get down to 10mg, but at least he can still get treatment when we get down there. Praying it all goes well for your husband and mine.

Have a Blessed Easter

Michele