I have something to say... hope it helps someone.

[jscgdunn]

Randy,
Keep your chin up....I had lymphoma 23 years ago...the chemo just about did me in but I am still here causing trouble.

All the best,
Jeff

[CanDman]

Woe......Ran.....that's heavy man !! I know you have a solid faith in the Lord and I know He is, was and always will be by your side, no matter what happens. I pray that your walking and talking with Him will give you peace, strength, hope and absolute assurance. I love you brother and I will keep you in my prayers and continue to petition for His perfect plan for you. Looking forward to getting together......keep shining......keep smiling.....and for God's sake.... keep riding !!! 
Kev 

[rktmanfj]

So, here I sit in the chemo chair once again...  treatment began this am in Indianapolis (carboplatin, FU/5, Erbitux).

We'll continue this until the disease regresses, progresses, or the treatment side effects become intolerable.  If it's anything but regression, I'm told that I will indeed be admitted to the University of Cincinnati trial.
Not entirely sure what to pray for here.  

So, when is a failure not a failure?
Apparently, when you're subject to clinical trial admission protocol...   

Shortly after I wrote the above post, I suffered what I was told was a near fatal reaction to (they think the carboplatin, but perhaps the Erbitux) one of the drugs, and was hauled out of there completely unresponsive and with no detectable pulse.  Spent the rest of the day in the Emergency Department next door.

By the next day, I was feeling great again, and have since.

We came away from yesterday's appointment with a new plan: The 'failure' last week isn't regarded as such by the trial administrator, since I didn't receive at least a full dose of the three drugs.  So, we have to try something else before I can get in.

I was given the choice of 5-6 drug options, all of which have different side effects, but fight the disease pretty much equally... a true 'pick your poison' moment.  I chose Gemzar (Gemcitabine Hcl).  We'll start a nine week regimen starting later this week, then get a CT to look for progression.  If none, we'll continue.  If so, the trial admin says I can join then.

It's cool, windy, and rainy in Indy today, but the forecast for the next two days calls for mid-50s and partial to full sun.

I'm going riding. 

[Mark Olson]

A ride on the fj is always a good idea.

Sounds like another med cocktail is next , Hang tough Randy.

[rktmanfj]

Time to post an update to this thread, so here goes...

After three rounds (nine weeks) of Gemzar, the post-treatment scan showed that my previously discovered '20 or so' lung tumors had increased to 'many more'.  I was now qualified for the Keytruda trial at the University of Cincinnati, and an appointment was set-up.

Upon my arrival at UC Barrett Cancer Center things seemed good at first, but quickly descended into chaos.  I have never witnessed such a disorganized mess in my life.  After debating with their staff on multiple fronts (whether insurance would cover any of the treatment there - due to our 'healthcare reform', it wouldn't, and whether the trial actually existed - it did), I was finally seen by the doctor administering the trial, who determined that I was an ideal candidate for the Keytruda trial.  All that he needed was to obtain copies of my latest scans.

I returned to Indianapolis, confident that I would soon be receiving more treatment... I could not have been more wrong.

After numerous calls between myself, my oncologist, and UC, it became obvious that something was wrong. Days stretched into weeks, and I could not get information from anyone as to what was the bottleneck.  Finally, being very persistent with someone at UC, I was given information that I would not be accepted into the trial, and along with that little nugget, three conflicting stories as to why that was the case.  This, of course, turned up my level of persistence to the point where I was able to figure that someone made a mistake.  I'm not able to ascertain whether it was by UC or St. Vincent personnel, but was told that, bottom line, I was in no way, shape, or form, going to be in that trial.

The following week, my oncologist received a call from the UC doctor, who apologized for the misunderstanding, and suggested that he petition one of the drug companies to help us out with an off-label treatment with one of the new biologic drugs (Keytruda or Opdivo).  This assistance was needed because insurance companies will not pay for drugs that are prescribed for off-label (other than FDA approved) treatment, and they are insanely expensive (in my case $9500/dose).  Surprisingly, Bristol Myers Squibb immediately reached out to me, and offered a year's supply (and more, if needed).

The Opdivo treatment began eight weeks ago, and I felt improvement from the first day.  Breathing was easier, and pain left, and hasn't returned.  I received a new follow-up scan on Wednesday, with the results today.

Unfortunately, the scan shows that it had no positive effect whatsoever on disease progression. This is a 4th line treatment failure. The net effectiveness of the chemo drugs yet available to me is 10%.

Pending negotiations with insurance, I am being referred to the research department at the IU Simon Cancer Center. They plan to do a needle biopsy, in order to get a complete genetic map of the disease. The information therein might be completely useless, or it may allow them to cast a silver bullet. Time will tell.

My oncologist said this morning that if he were just handed my chart, he would've come to the exam room, prepared to refer me to hospice.  But as always, he is shocked to see that I still have a healthy appearance, and am doing, within reason, whatever I want to do (even sporting a healing gash to me hand from a yard work accident last weekend).  Recovery from the biopsy is minimal, and he advised me to continue doing what I want.

If you're bored enough to have read this far, here's the good part:  I have reservations for the ECSR, WCR, and Central FJ rallies.  Susan is coming along for all or part of them (plans are still a bit in flux, but starting to gel).

Let's go riding!

[FJmonkey]

Looking forward to seeing you both in Willits, would you like to light off the Thermite for the campfire?

[rktmanfj]

Looking forward to seeing you both in Willits, would you like to light off the Thermite for the campfire?

Doesn't one have to be fast enough to get away from that stuff, once lit?     

[FJmonkey]

Looking forward to seeing you both in Willits, would you like to light off the Thermite for the campfire?

Doesn't one have to be fast enough to get away from that stuff, once lit?     

I use a strip of MAG ribbon as a fuse, the longer the strip the more time you have to get a good view of the light show. A 3" strip will give you about 20 seconds. And I found if you pack it a bit tight it burns off slower, giving a longer light show.

[Pat Conlon]

Great Idea Marcus!

Randy gets the horrors......I mean honors.....stupid spell check......honest.....

[yamaha fj rider]

It's great to hear form you. We are so happy to hear that you and Susan are going to the spring rallies. Looking forward to meeting both of you. If there is anything we can do to help please let us know.

Kurt

[FJ1200W]

My oncologist said this morning that if he were just handed my chart, he would've come to the exam room, prepared to refer me to hospice.  

But as always, he is shocked to see that I still have a healthy appearance, and am doing, within reason, whatever I want to do (even sporting a healing gash to me hand from a yard work accident last weekend).  

Let's go riding!

My thoughts and prayers go out to you. Prayers for skillful physicians. 

Thanks for the positive demeanor, keep fighting the fight.

[PaulG]

Looking forward to seeing you both in Willits, would you like to light off the Thermite for the campfire?

What a coincidence.  I just saw this the other day.

https://www.youtube.com/watch?v=JEoqrjFX1yI

And if you want to build one...

part 1
https://www.youtube.com/watch?v=9XAnx5x8E-8

part 2
https://www.youtube.com/watch?v=uDm3is3PDc0

Just need to figure out how to carry it on the FJ....  good luck!

[FJ Flyer]

Randy, sending all the good karma I've got your way.  Keep up the fight.

Wish I could make the ECSR, but it appears the powers have conspired against me.

I'll catch you there next year.

[rktmanfj]

Randy, sending all the good karma I've got your way.  Keep up the fight.

Wish I could make the ECSR, but it appears the powers have conspired against me.

I'll catch you there next year.

    Deal.   

[Picopower]

Hi randy,
I read your post a couple of days ago and was thinking of you today.
and would like to say thank you for sharing. My father died from C when I was 17.
Back in 1974. They still had used radiation and chemo. Sounds funny that same sort of treatment 40 years later. My brother in law just passed with head and neck cancer, came back, he was 67.My wife is a cancer pharmacist. But my thoughts are if we live long enough, almost all of us will get the darn stuff.
Good thoughts and prayers your way,
Dave