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Update on my brother

UncleBuddy
Posts: 1019
Joined: Aug 2013

My brother's heart function is up to 46 from 20. The doctors decided to put him back on 5-FU, but not in the 48 hour pump, just in the IV at infusion, along with the irinotecan. The dosage will be lower, but instead of getting chemo every other week, he will have it once a week for 4 weeks, then 2 weeks off. He's being recertified for Medicaid, so I hope it all goes through. They sent the paperwork to the wrong address (he moved and we notified Social Services/Medicaid) and we got the paperwork too late, so they discontinued the Medicaid. I got a call the morning of his blood work that the cab couldn't take him because Medicaid was discontinued. They never even notified us. So I had to bring the paperwork and get them to temporarily give him the ride to chemo and blood work. He is set for July until they decide if they will recertify him. I hate having this hanging over our heads. It cost him $20 to get back and forth, so it would cost him $40 a week to have chemo. Keeping my fingers crossed that he gets it back!

The liver tumor grew, but not a whole lot. The doctor is going to continue monitoring his weight loss. They will weigh him before every infusion to make sure he gets the correct dosage. She didn't really say what she thinks is causing it, only that we will monitor it. She did say it happens in chemo patients. i didn't dig any further because I didn't want to upset my brother and dad. If he's still losing weight by his next visit, I will talk to her out of dad's earshot. I don't want to upset him. His bp is improving and I think it's because we don't tell him every detail anymore. 

I am still upbeat about the whole situation. His lung tumors are stable and the liver tumor grew, but not at a huge rate. His heart function has improved, so that's great news. it's still not normal, but a lot better than it was. We'll see how it goes. Happy 4th of July weekend to everyone!

Lin

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

it is difficult to deal with all this. But you are handling it well. Wish you strength to continue and don't forget to take care yourself. 

Laz

UncleBuddy
Posts: 1019
Joined: Aug 2013

I appreciate your good wishes! I hope you're doing well! I have been keeping on top of my own health, for the most part. It's hard to find the time while taking care of my brother and dad.

Lin

Trubrit's picture
Trubrit
Posts: 5486
Joined: Jan 2013

Its a constant struggle, especially with medicare, medicade. Its a flawed system, for sure. 

I hope the weight quits going down and becomes stable or improves. The chemo is so hard on the system. 

Sue - Trubrit

UncleBuddy
Posts: 1019
Joined: Aug 2013

When the nurse came last night, it looked like his weight is started to crawl back up. It's not that he couldn't afford to lose a few lbs, but we want him to keep up his strength. He starts the new chemo schedule next Thursday, so we'll see how it goes. I'm hoping to hear from Medicaid soon. I'm hoping they don't just take it away and leave him sitting there waiting on the taxi. I was so annoyed that they didn't let us know.

Thanks for the good wishes!

Lin

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