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waiting game

Posts: 1019
Joined: Aug 2013

Since my brother's liver tumor grew a little bit while on irinotecan, the doctor decided to try to add 5-FU back, but only via IV, not with the pump. My brother had the first 3 doses of chemo, but after the 3rd he developed severe diarrhea that Lomotil AND Imodium didn't help. So he went for the 4th chemo and the doctor said he wouldn't be able to have it. He also had a low grade fever.

The new plan is to have an echo cardiogram before the next cycle. If everything looks good still with his heart, they will start the 2nd cycle in another 3 weeks, but at an even lower dose. His doctor is trying to do as much as she can for him. I guess she's looking for the best protocol for my brother, something that he can tolerate without having severe reactions.

Please keep him in your thoughts and prayers.


lizard44's picture
Posts: 409
Joined: Apr 2015

for your brother. And for you.  It's never easy  seeing  someone you love suffer.  My sister was also  intellectually disabled, so I can empathize in a way with what you are all going through.

Posts: 1019
Joined: Aug 2013

I appreciate the positive thoughts! My brother is such a sweetheart, so I only wish him the best!

Cathleen Mary
Posts: 827
Joined: May 2011

Your brother isn't the only sweetheart in the family....prayers.


Posts: 1019
Joined: Aug 2013

Thank you! That's very sweet of you.



Yesterday I had dad at the cardiologist because his BP was high when the nurse came to check on them. They upped his dose of one of the heart meds. Trying to keep track of their meds makes my head spin, sometimes. 

I hope all is well with you.

Posts: 2215
Joined: Oct 2011

Sorry I didn't respond earlier Lin. Your brother, father and you are in my prayers.

Posts: 1019
Joined: Aug 2013

I appreciate all the prayers.

Trubrit's picture
Posts: 5511
Joined: Jan 2013

He really is going through the mill, but sounds as though he is a real fighter. And with you and your Father right by his side, I'm sure he will do well.

It sounds like he has a first class Doctor, who is sensitive to his needs as well as his Cancer. 

You are all in my prayers. 

Sue - Trubrit

Posts: 1019
Joined: Aug 2013

They are doing another echo on the 26th. He restarts chemo on the 27th. The cardiologist meets us after the echo and gives us the results right away, so we'll know then if his heart is okay to continue. His oncologist is a sweetheart. She wants to see him do well and will tweak his chemo to make him as comfortable as possible, as long as it continues working. His onc is great with the family too. 

He is a fighter. I don't know how he does it. He is a very calm, upbeat person who looks at the good side of everything. 

I appreciate all the prayers. He needs them, that's for sure.

I hope you're doing well. 

Take care.


Easyflip's picture
Posts: 588
Joined: May 2013

wishes Lin as you care for your father and brother. Doesn't seem fair but nothing about cancer ever does.


Posts: 1019
Joined: Aug 2013

This is his 2nd bout with cancer, so it really sucks! He's been through a lot in his life.

Thanks for your well wishes.


wolfen's picture
Posts: 1330
Joined: Apr 2009

Just saw your message and hope that things are better for your brother. I know that "living in the bathroom" was one of JBG's biggest problems, no matter what chemo or dose she was on. Your brother definitely is a fighter, as you are. Hope your dad's BP is under control.

I'm sure your poor head is spinning trying to keep it all sorted out. Ron took so many pills each day. Each week I would line them all up on the counter and fill the huge pill box. Would never have been able to keep them straight otherwise. Was difficult even then as dosages were constantly changing for the heart and diabetes meds and pain meds.

Am thinking of you and hoping for good things for your family.



Posts: 1019
Joined: Aug 2013

I set up both dad's and my brother's meds. I usually set up two weeks worth. It's amazing how many pills they both take. I have a bin for each of them with their meds and what is taken at what time. I figure if I'm away, anyone can go in there and set their pills up for them. My granddaughter turns 2 in September, so we're going south for her birthday. My sister covers for me (to a point), so having the list of meds will help. I also have a nurse coming in twice a week to check them. It makes me feel better knowing they are monitored at home.

His diarrhea has subsided for now. He is supposed to start back on chemo the 27th. He now does 4 weeks on and 2 weeks off. Dad's bp is good now. They upped one of his meds, so far so good. 

You know we all miss JBG. She was a fighter, too! I know it must be hard on you.


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