How is your appetite and sense of taste on the Opdivo/Nivolumab infusion. Are you having to supplement with protein powder smoothies.

I read recently were they were trying to make the infusion a once a month vs every two weeks.

Doctors don’t always get it right, Tom, I’m glad to see this is one of those times.

Stay strong.

This is fantastic news, lbj...still keeping you and yours in my thoughts and prayers...especially a prayer of thanksgiving at this good news!

I'm really glad to hear this great news lbj. You have enough on your plate without dialysis thrown into the mix. You're in my thoughts and prayers.

Jim

Glad to hear the latest update lbj, great news!

Wow, I am sitting here just shell shocked in a good way, but I am shocked nonetheless.
I mean, I feel humbled and grateful. But miracles seem so much bigger than myself.
The be a part of these is incredible.

A quick rundown of the bad things that happened this year:

Late January I get rushed to the hospital with heart stoppages. I get emergency heart electrics and the next day real pacemaker things for some heart muscles and get sent home.

Later that night I am rushed back to the emergency room, placed in ICU, my family told I am not going to make it. Then I lose memory of that whole next week.

All the heparin they are giving me causes half my blood to seep out of my organs and go to some hematoma somethingoranother in my right leg causing me to get a blood transfusion.
This all happened during a low blood pressure event, 62/42.
In the meantime, my only kidney shuts down from the blood loss and I go on dialysis at the hospital.
I am also told I will be on oxygen for the rest of my life.
And somehow during the ICU time, I managed to come down with that nasty flu and pneumonia.
I suffered some sort of ICU dementia while hospitalized.

I found out later that all my doctors had a meeting and it was agreed I was not going to survive.

It was a nightmare.
Yet I live.

I get released and find I am so beaten down physically and emotionally.
All those close calls and dying things for 3 weeks just plain wore me down.

Next up, I go on to dialysis 3 days a week for 4 hours at a clip. The hospital doctor said I had a 50/50 chance of my only kidney restarting or I'd be on dialysis the rest of my life.

For the next 4 weeks, I go to dialysis though made me not want to continue it if it was going to become a life long project to keep me alive.
Today, I was informed that my kidney has restarted and I am off dialysis.
My Nivolumab infusion cancer treatments have restarted and my heart works as electrified these days.

Given all the above, there are so many miracles at play and it's all so incredible to me.
I keep beating the odds and we know who is responsible for this.
Praise God!

Great update!

quote:

Originally posted by lbj:
Wow, I am sitting here just shell shocked in a good way, but I am shocked nonetheless.
I mean, I feel humbled and grateful. But miracles seem so much bigger than myself.
The be a part of these is incredible.

A quick rundown of the bad things that happened this year:

Let's not forget that the first time in ICU they placed you in a medically induced coma and you were on a respirator for at least 3 nights. You fought your way out of that......it would have been easy to give up, but you didn't!

I too believe the good lord works miracles. The strength and courage you must have to survive is clearly immense, and as they say "the lord helps those who help themselves".

quote:

Originally posted by lbj:
Yet I live.

Like a boss!

You are absolutely SIGforum’s own Energizer Bunny and we are all better for your presence and example. May you continue to inspire us all for many more years!

To be real, I was a nasty SOB about all my medical treatment.
I did not get through this with my nice sweet personality.

I was downright hacked off the entire time and was not pleasant to be around.
I get mad at medical things done to me because I despise them so.

I get a bad attitude and can be mean, saying bad things.
I don't know why, but all that negative energy seems to work for me.
Such makes me gear up, refuse to accept the status quo, fight and here I am.

But it isn't pretty to watch.

There is another pattern at play as well.
God breaks me, then delivers me, over and over again.
Praise God!

quote:

Originally posted by Censored:
How is your appetite and sense of taste on the Opdivo/Nivolumab infusion. Are you having to supplement with protein powder smoothies.

I read recently were they were trying to make the infusion a once a month vs every two weeks.

I had initially been on Votrient and I lost all my sense of taste from that treatment.
Amazingly enough, once I began the Nivolumab/Opdivo, all my taste was restored and it doesn't effect such at all.
I have not had to take any supplements while on Nivolumab the last year and a half.

quote:

Originally posted by lbj:
I received a phone call moments ago from DaVita, the dialysis center. My only kidney has restarted.
They told me not to come in for treatment today as I have passed the tests and am being removed from dialysis!

I will still have blood and urine follow ups for a while.

Mrs LBJ and I are so thrilled.

This truly a miracle and another gift from God.
Praise God! He truly is the Healing God, my Lord and my God.

This is truly great news Tom.
Prayers still coming.

I do believe in the Lords power to heal.

Remember me?
Lung Cancer Survivor Stage 3B 2009.

God Bless you and Family
Roy

Reading parts of this thread would surely turn the hearts and minds of at least a few of those who vociferously deny the existence of God.

More miracles...

I saw the cardiologist yesterday.
The battery positions look good and batteries the are working properly.

There are no restrictions on my activities as I heal up and he said I could shoot rifles as soon as I am able as long as the rifle is on the opposite shoulder from the heart.

Of course until I get the dialysis tubes out of my right shoulder, the point is moot.

He also said that the problem with the electrical things degenerating for the heart muscles were not my fault and that my lifestyle did not cause this. It's just one of those things.
He also said the plaque buildup in my heart was minimal, which surprised me.

All in all, very good news.

Oh wow LBJ.. speechless on what you had gone thru just in 2018..

Miracles.

quote:

Originally posted by lbj:
More miracles...

I saw the cardiologist yesterday.
The battery positions look good and batteries the are working properly.

There are no restrictions on my activities as I heal up and he said I could shoot rifles as soon as I am able as long as the rifle is on the opposite shoulder from the heart.

Of course until I get the dialysis tubes out of my right shoulder, the point is moot.

He also said that the problem with the electrical things degenerating for the heart muscles were not my fault and that my lifestyle did not cause this. It's just one of those things.
He also said the plaque buildup in my heart was minimal, which surprised me.

All in all, very good news.

Fantastic!! You need to plan your next trip to Mauna Kea! We were there in Feb, and I was thinking of you.

Wow, LBJ! That is some good news!!