Lung stuff sucks.
4 years ago I went in for what I thought was a bronchial infection.
Wound up doing the X-ray, cat scan, biopsy regime.
I've never smoked or dipped in my life, so of course I'm expecting a lung cancer diagnosis.
Nope, sarcoidosis. I'm at about 40% lung capacity these days.
While not something you want, it's not cancer. But this on top of asthma still sucks.
Lbj, hrh, I'm wishing both of y'all the absolute best.
Like allergies and other respiratory issues, only sufferers really know.
In fact, I'm sitting in a hot bath right now after spending the last hour hanging over a pot of boiling water and enjoying an albuterol nebulizer treatment.

lbj, I read your hospital horror story. I would be inclined to write a detailed letter to the CEO and the Chief Nursing Officer at the hospital. As for your diagnosis you ARE NOT a stat in a medical chart. I can tell you that in 1987 I was told that I would have three to five years. It is now 2016 and I am cancer free and have an active lifestyle. God Bless

quote:

Originally posted by keltoi:
lbj, I read your hospital horror story. I would be inclined to write a detailed letter to the CEO and the Chief Nursing Officer at the hospital. As for your diagnosis you ARE NOT a stat in a medical chart. I can tell you that in 1987 I was told that I would have three to five years. It is now 2016 and I am cancer free and have an active lifestyle. God Bless

This. Notifying the CEO & Chief Nursing Officer may save prevent future complications.

quote:

Originally posted by lbj:
We saw the oncologist today.
The news is mostly the same.

Although the brain CT Scan was clear, and they see no abnormalities, they want and will do a brain MRI.

Then I go to Cancer Camp next week for an hour, then off to see a different oncologist, the top in the area.
She has been reviewing my case for the past week.

The treatments are all immuno therapy, and we will start with oral tablets in a 3 weeks with some sort of enzyme blocker essential for tumor growth. If that doesn't work we have 2 other immuno therapy tablet options.

It seems certain that the best we can do is perhaps shrink these masses a bit or hold them steady and at bay. Remission is not a viable option from any known treatments.

The concern now is one lung nodule, all others are specks, and the one lymph mass that is 2cm.
The other lymph masses are tiny as well like the lung nodules, with the exception of the one.

There were no surprises.

The oncologist thinks 3 to 5 years for my lifespan like the urologist said.

Treatment will begin in about three weeks.

Immuno-therapies for metastatic renal cell are the current trend. The enzyme blocker is probably a Vascular endothelial growth factor or Tyrosine Kinase inhibitor. These compounds work to inhibit new blood vessel growth in tumors. The method of action is pretty cool. Google VEGF if you want to learn more. The good news about this type of a treatment plan is that your quality of life will be better than if your received chemo.

When my wife was diagnosed with cancer we spent a lot of time getting our act together (thoughts, feelings, challenges, what her wishes were, financial items, etc.). We probably grew more together as a couple than we had in all the years we had been married. I suggest that you start (if you haven't already) doing the same and take advantage of the time you have together to grow and establish your legacy. We should all do this, with or without a cancer diagnosis.

Did they ever give you a TNM staging and grade?

I forgot to ask that question.
Tuesday is cancer camp and then they set me up with the next oncologist.

When I see her, I will ask for that information.

quote:

Originally posted by ontmark:
lbj

I have some Old FORD Blue Oval racing decals that I have had for over thirty years.
I will send you some if you want.
They are about 5 inches long.
My email is in my profile.

Sure, thanks, I will email you.

Prayers Sent

Hang in there Para - wife just went through the same thing recently - big scare over the Christmas holidays.

A calcium scan for shortness of brerath [done for circulatory investigation] showed possibly something on the liver and in one of her lungs.

Calcium scan negative - all good. Next step was a lung xray - all clear. Then full body cat scan with contrast dies - confirmed maybe something on liver. Then MRI on liver showed lesions / cysts - only explanation now is that these could have been there since birth or maybe the estrogen replacement meds were causing this.

In the end no cancer.

I had a scare a couple of years ago with neck tumors - turned out benign, but had to go through the whole biopsy and surgery thing to rule out CA for certain.

I genuinely understand what the mind can do before the full story is understood.

Blessings and prayers for you while in the midst of this.

I went in for Cancer Camp today.

Reading between the lines of what was discussed with me left me with a down feeling.

I start with oral meds in a couple weeks called Votrient.
There many side effects and the reality is that there is no hope of remission here and that the best we can achieve is delaying growth of the cancer for as long as possible.

There was no good news in what was proposed and discussed.

I am going to go ahead and begin the medicine regimen, but if all the potential side effects come true, then I will have a huge decision to make on whether to continue with bad quality of life but longer, or a very short life without medication but better quality.

And so it begins.

All the depressing news today has not affected my life's philosophy however, as I have written about at length in this thread.

But I do have hard choices coming if the Votrient is either ineffective or I have huge side effects therein.

One thing I have learned though is with everything I have experienced and learned in my life has led to how I deal with my emininet demise.

I have to say that I always used to wonder who I would be and how I would react when this moment arrived.
Based on how I feel and have reacted, I have to say I am the person I always wanted to be for this moment in time.

That is a wonderful feeling.

lbj,

My prayers and thoughts.

I'm sorry it went that way, LBJ.

We will be praying for you, that you be blessed in every possible way as you make this journey.

Kind words, thank you very much.

Use should ask if Opdivo is an option for you. It was approved for kidney cancer treatment in November of last year.

I was also on Votrient as well. I had mixed results after my first set of scans three weeks ago. I made gains in some areas and had loses in other areas. They switched my meds to Opdivo.

Hmmm, Optivo.

I will start with the Votrient as the doctor suggests.
However, the next time I actually visit her in person, I have a whole bunch of questions for her.

I just got off the phone with the younger daughter who lives in Dallas. She asked my advice about a few things.
Such makes me feel useful and was a bright spot in an otherwise not so great day.

See? It's true, there is something in every day to live for, even the bad ones.

I call that living each and every day, it wasn't wasted.

lbj
I have not met or talked with you, just through the interweb. If you were adoptable you would be a younger brother if you would have me.

I hope that I can handle things as you have in my unknown future.

With all my respect and "brotherly" love.

A day at a time good friend!

LBJ, you are an inspiration and you continue in our prayers.

quote:

Originally posted by thomjb:
lbj
I have not met or talked with you, just through the interweb.
A day at a time good friend!

I do worry though that perhaps my printed thoughts about all this going on with me may be a bit hollow or shallow, and not as deep as I had hoped.

If my words here so many pages later are indeed this way, I would really want to know.
I mean, I would not want to be the author and purveyor of tasteless pap.

Many of us here, consider you part of a family. I want to know how you are doing/feeling as much (or more in some cases)as I would from an immediate family member.

I also think it is healthy for you to post your thoughts/concerns/etc - you have an amazing support group here.

Thanks for that.

I tell you what is really beginning to irritate me:

1) the non stop visits to the doctors and constant medical tests has begun

2) side effects may be coming from the Votrient soon and I'm being told every one of those can be dealt with. Yeah, sure, and then I am on a dozen of meds, now that is going to be a nightmare.

I have never been of the mind that taking lots of different meds is a good thing.