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Still has pain

Twinzma
Posts: 212
Joined: Jan 2018

Well Jim is still in a lot of pain. Tomorrow he is having an EDG done to check for an ulcer. I have begun to lose faith in the doctor that did his Y-90. He told us only 2% of patients could develop an ulcer, but I am reading 26% in studies....Which is it? Not that it matters really, the damage has been done, but I think he should have been better informed going in that there was a much higher chance of it occurring. Since the 2nd Y-90 his quality of life has diminished some, he never had pains before and a great appetite, now he hardly eats. I am going back to the basics of unhealthy comfort foods for him to encourage him. Like last night, I made Swedish meatballs he ate good. The other night fish and veggies, he wouldn't touch it. He has lost about 8 pounds so far. 

His CEA has been all over the place too, dropping drastically into the 20's jumping back into the 90's we don't know what is going on. 10 more days until the next PET scan and follow up on the 22nd. Seriously, making you wait 10 days from the scan???? We should be used to it by now, however it still irks the heck out of me that the results are there and we are just left in the dark for so long. 

He did manage to make it out with me on Friday, our time out together in a very long time. I had my best friend from high school staying with us I hadn't seen her in 25 long years. It was a very nice distraction for us and Jim seemed to have a good time. Though Saturday he was toast and spent the whole day lounging on the couch. Sunday, he got up and took the boat out with one of our son's. No matter how crudely he feels, he is always there for the boy's...that never ceases to amaze me! 

When my friend was here we took her to a local dive bar with airboat rides....We had a very nice time I even got to hold a baby swamp kitty. Not sure how to upload a smaller picture but here I am with it! All that was holding it snout was a flimpsy hair tie. Ummmm yea not the best picture, I was afraid it would bite! 

 

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I wonder what's up with that. I was believed to have had an ulcer in about November due to almost constant nausea and vomiting. I lost quite a bit of weight. I started taking pills for an ulcer but hadn't been tested yet and they seemed to help. Then I was on chemo so I couldn't be tested. About a month and a half ago my tummy sorted itself out and I have no nausea at all and haven't thrown up in over a month. But nothing has changed. I don't know if I never had an ulcer, if it rectified itself, or what happened. It would be good to know because then I could prevent getting like that again. 

Mmm, Swedish meatballs. I'd eat that, too. I also experienced the fatigue that made it so hard to do anything or even leave the house and the exhaustion the next day or two after I forced myself to do something. It also went away and I don't have an answer for that, either. Every morning when I wake up I lie there for a minute assessing myself to see if I've gone back to being so weak again because that's how fast it happens. Again, I don't know why and have no way to prevent it because I don't know.

Very frustrating. I'm sorry for your husband and the struggles he's going through. I hope eventually he ends up like I am now with that behind him, for a while at least. It sure makes me grateful for every day.

Jan 

Twinzma
Posts: 212
Joined: Jan 2018

I don't know why. It's really stressing me out tonight what they may find tomorrow. He just informed me that he thinks he is bleeding now. Dark tarry stool and the pain is worsening. Tomorrow can't some soon enough right now. I kind of lost it a little after he told me, my Dad died from a bleeding ulcer and it just brought back so much pain. I don't think I will get much sleep tonight. Fortunately he ate some rice and chicken and laying down resting. But Damn his stupid job! He is on call this week, he has been working remotely since he got home! If that phone rings again, I swear I will flush it down the toilet. He won't speak up, afraid he will lose his job and insurance, but this is absurd he needs to be resting before and after the EDG. Granted it is a computer based thing, he still shouldn't be doing it. 

Butt's picture
Butt
Posts: 318
Joined: May 2018

I am sorry for you hubby. It is something many people who just got diagnosed don t get. It is one thing after another and you don t know what will be next. It is a rather pathetic journey. I woke up last night and sneezed that produced a profound nose bleed as a side effect of Avastin. Of course that is not that dangerous as a possible internal bleeding but you never know what will be next. We are with you, gal. Butt.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

If he's got dark, tarry stools then it certainly sounds like an ulcer. The advice these days for them has changed. No milk or milk products if possible. They used to tell people to drink milk to soothe them but they found that because the ulcer is actually a bacterial infection milk doesn't work. It soothes it at first and then the milk has an acid in it that irritates the ulcer. So not even anything like yogurt or pudding. Also caffeine is something that irritates them quite badly. 

Good luck!!

Jan

Twinzma
Posts: 212
Joined: Jan 2018

Yup the EDG revealed several very large ulcers. WHICH, would have never developed and if they did, had improved if one of the doctors would have told him to take the prescriptions he was given separately! I thought his head was going to explode when the GI he saw today told him that he couldn't take the 2 together that they had to be taken 30 minutes or more apart. Nothing on the scripts, in the information packet said anything of this nature Nor did the doctor that prescribed them told him/us . The Caffate (?) sorry don't know the spelling was absorbing the Nexium in the esophagus so it never reached the stomach to prevent the ulcers from Radiation! He will likely have a repeat EDG at the end of the month, to make sure the meds are now doing their job. 

WOW all this set back and it could have been prevented had someone said take this pill 30 minutes later. UGH!!!! I am so infurated, but it could have been much worse. They did not seen any active bleeding but said it likely was bleeding earlier and resolved on it's own.  Whew he is resting comfortably now and goes back to work in the morning. 

 

SandiaBuddy's picture
SandiaBuddy
Posts: 893
Joined: Apr 2017

What a relief it must be for both of you.  The medical system can be very frustrating and sometimes you wonder what the doctors--and in this case, especially the pharmacist, were thinking.  I am glad you got it figured out and hopefully there are brighter days ahead.

Kazenmax's picture
Kazenmax
Posts: 357
Joined: Feb 2016

I will tell you that if he is taking peptobizmal to coat his stomach, that will cause stool to look dark and tarry. I hope now that he’s straight on his meds, things will improve. It is just awful that no one said anything. You have to be your own best advocate when it comes to this stuff. All too often we become an appointment and not a person looking for help.

k

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Wow, how horrible! I'm so glad for him that it's now figured out. Does he take Pantoprazole?

Jan

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