Meet Me in St. Louis

When we finished the first two weeks of Riluzole, Frances contacted Dr. Goydos in New Jersey for more information.  He indicated that he has started a new study that has the patients taking 200mg a day for six weeks.   So, after a break of a week, we began again and are now on our fourth week of Riluzole.  After two more weeks we will have another set of scans to find out what’s happening.

In the meantime, I’m headed to Des Moines, IA, on June 9, by way of St. Louis, to attend a Randy Clark healing and impartation clinic.  Randy has a well-known healing and miracle ministry and the meetings in June are the nearest meetings we can attend.  I’m stopping in St. Louis to pick up my long-time good friend, Dave Claybrook, who is going to attend the meetings with me.  We will have almost a week to spend together while attending Clark’s meetings.  Plus, Dave and Randy both pastored in St. Louis and it will be a chance for Dave to reconnect with Randy.

Some of you readers might be concerned that we are grasping at straws, expecting a miraculous healing.  That is not the case; in fact, it’s just the opposite.  We believe that since God is our Healer we should be where His Spirit is manifesting and we should be where faith is strongest, which is in a meeting of those with like faith, where the anointing is manifested.

This is not to say we don’t appreciate the prayers of you who have been faithful in praying for us.  It is also not to say that your prayers aren’t “availing much”; however, your prayers can combine with our faith and Randy’s anointing for the desired outcome.  In addition, it is within the realm of the kingdom of God for this anointing to be placed on me, also, so I can bring it to you!

You may ask, “Can God not work in Lancaster, as well as in Iowa?”   Of course He can.  Yeshua (Jesus) could have also raised Lazarus from the dead from where He was, but He didn’t.   He even waited four days before going.  Who can truly foresee His plans and purpose?  We go in obedience to our faith.

Indeed, it is possible for our healing to be non-miraculous.  We might even be healed gradually and it will look as if the medical treatments were the main factor.  Surely, God works through medicine and doctors, too.  We don’t care HOW, or WHERE, or WHEN, or through WHOM God manifests His will.  Our task is to be obedient.

Continue to pray for us and with us, especially that He would allow this healing anointing to be brought to Lancaster.

We pray for God’s blessing on you all!

Here’s Your Hat-What’s Your Hurry?

I made the mistake last week of telling Dr. Kitano that I was taking Riluzole.   Even though she had told us that there was no more treatment for me at NIH,  even though she and her boss “hmm’d” and “umm’d” and gave us a very “maybe” response when we asked if the TIL cells would still do their work,  even though she seemed to suggest that we get an oncologist here, she still wasn’t happy we opted for another treatment.   In her email, she seemed to recant her previous position regarding the TIL cells, stating they were still in the blood steam and would still be doing their thing.  Nevertheless, we were booted out of the program which means no more trips to Bethesda and no more tax-payer paid CT and MRI’s.

In addition, they haven’t followed up on the gamma knife procedure to see if there is any change in the brain.  Regardless of our decision to add another medicine, it would seem they still have a responsibility to follow my progress until something changes.

So, allow me to be political for a moment:  Welcome to socialized medicine!  Forget Hypocrites, forget ethics;  if you don’t toe the mark and dance to our tune, we don’t have an obligation to treat you.  If you voted for Barry and Joe, see what you have to look forward to?  Next time, it could be you.  It’s the Golden Rule: them that has the gold makes the rule.

So, in the meantime, the Riluzole makes me irritable (which I constantly explain and apologize for) and it affected my attitude when I discussed my error of telling Dr. Kitano.  I was mad at myself and, with this irritability, it made me doubly angry, so I took it out on Frances.  Of course, I had to ask for her forgiveness for being such a jerk and I had to realize that God works all things for good, for those who love Him and are called according to His purpose.  I’m here for His purpose anyway, not mine.  He will work this out.  I also found that a little Prozac taken with the Riluzole helps put a damper on that irritability.

I have three more days and then we’ll have to see what happens.  Frances’ original goal was to let NIH do the scan on the 20th instead of us having to do it around here.

We appreciate all the concern and prayers!  Keep checking in and write us when you can.

Plan B

One of the protocols that Frances and Malcolm researched was a drug called Riluzole which is used for ALS patients.  There is a substance in melanoma cells called glutamate that is also present in ALS patients.  Riluzole attacks the glutamate and, in a limited trial, was found to be very successful in treating melanoma.

Dr. Patel agreed with our assessment that it was worth trying, so this morning I started a two-week course of Riluzole, 100 mg per does, two doses per day.

All drugs have side affects and Riluzole is no different.  The side affects are dizziness, light-headedness (isn’t that the same thing?), nausea, and diarrhea, to name a few.  Well, that sounds like a trip to the park!  Seriously, the last time I went to the park I was nauseous and had diarrhea.

So, we do this for two weeks and then on May 20 we had back to NIH for our 90 day check up.  I’ll let you know how the side affects go.

Lies, Damn Lies, and Statistics

[Thanks to Mark Twain for the title.]

You may note that the mixed results of our last test included the statistical reference of a “10 percent reduction” of the tumors and that the NIH only accepts 30% as a qualified “successful” completion.  But, with melanoma it’s not that simple.

First, melanoma is such a varied form of cancer that it is difficult to predict or confine its metastysis (spread).  Second, there are many variables that enter into this treatment I received.  The average dosage of IL2 (which boosts immune cell growth and activity) is 6.  Some people can take as many as 15 doses.  Some people get so nutty that they run down the hall, naked, screaming they are on fire.  I’m sure that Frances and Merritt (not to mention me!) are glad that didn’t happen to me.  I received 6 doses and only saw ants crawling on the bed.   And I talked to nurses who weren’t there,  but at no time was I ever naked or on fire.  (I’m sorry for that visual image.)

So, would more doses help the success rate?  That is, if my body were more resistant to the drug crossing the blood/brain barrier (when you start hallucinating) would that improve the success rate?  How would one know ahead of time, before the treatment began, how one would react?

Third,  how long does it take for the “success” rate of 30% to be reached?  The doctors at the NIH seem to indicate we should have reached it within 6o days. [It was so hard to get them to say anything definite.  It was like nailing jelly to the wall.]  Are the TIL cells still there, working?  Yes….and no.  They are still there but the chances of them having further success is small, but that doesn’t mean it won’t happen.

Fourth.  I recall the success rate, at the beginning, being 30-40%.   But, of what?  How far had the cancer spread?  Obviously, it is not uniform in every patient; some people have extensive Stage IV progression and some, like me, have Stage IV but nothing in any organs.  In reality, Stage IV must be divided further.  For example,  Stage IV could have ten (or more) sub-sets indicating the aggressiveness of the disease.  So, if there were more test subjects who were Stage IV – 3 or under, is the success rate greater than those who were Stage IV – 4 or above?

Finally, we are all so different, physiologically, that it’s becoming obvious to Frances and me that we may have to try a variety of treatments in order to find the right one – or the right combination of treatments.

Sensing the NIH will release us after our next visit, we have chosen to work with a local oncologist, Dr. K. Patel, who has been given excellent reviews by Malcolm and Sandra Edwards.  In addition to being a fine oncologist – with sources and experts in the best cancer treatment centers in the U.S. – they hail him as being committed to his patients and very compassionate.  (I wish I’d had him put my halo on!)

There are still more things to try.  No one is giving up, especially Frances, who is like a pit bull with a new bone: she is tenaciously working on getting the best advice and treatment we can find.

Halo Picture

Waterboarding Can’t Touch This!

Friday, April 17.  We got back from the gamma knife procedure around 2 pm and I slept until around 4.  Frances took pictures of the “halo” installation which we will share after we get home. 

 

We had to be in the Radiation department at 6:45 am.  The halo installation was without doubt THE MOST EXCRUTIATINGLY PAINFUL  thing I can remember that was done by any medical person(s) in my life.  From the first “anesthetic” – which was supposed to be “a little painful” – to the tightening of the screws – which added pressure and pain (think of your head as being in a vise with 4d nails in four points) - it was so painful that I’m not ashamed to admit I couldn’t hold back the tears and I even began to shake because of the trauma.  They tell me I was sweating profusely, though I don’t have any memory or awareness of being hot.  Dentists hold no candle to these torturers; at least the dentist will wait for the drugs to take affect.  These guys just plunged right in.  When my mind is in better shape (I’m still experiencing a level 4 [out of 10] headache as of this writing), I will try to describe it step-by-step.

 

Don’t forget Frank Burns in M*A*S*H: “We’re doctors; we’re trained to ignore people’s pain.”  That pretty much sums up the halo installation.

 

I put anesthetic in quotes because if that was anesthetized, I can’t imagine having this done without anesthesia.   In fact, the anesthesia was the SECOND most painful thing, the first being the actual screws going through my skin to my skull.  Add to that, I had taken two Atavan and one Percoset before I went into the placement room, so I was as drugged as I could be.

 

However, once the halo was set in place, there was only pressure on my skull and the pain had diminished to about a ’1′.  Then, they sat me in a $3000 recliner (with all KINDS of bells and whistles!) where they supported my head/halo and I napped in there for about 3 hours while they created the procedure for the gamma knife.  I spent about 30 minutes in the machine with my head/halo bolted to the table while the radiation “knife” rotated around me, doing its thing.

When it was done, they took off the halo, which was painful, but not nearly as bad as the installation.  Now, we’re just chillin’, waiting for the headache to go away, which it’s supposed to sometime this afternoon/evening.

 

We have been given a “probable” results of all that we have been through so far.  According to the doctors, they have seen a 10% reduction in the size of the tumors under the arms and the others are “steady”.  One new spot has been found on my spine, in the bone, at T7. It has also been there a while.

 

For clinical trials to be considered “successful”, the reduction should be 30% and, according to Dr. Yang, we shouldn’t expect too much more.  So, that means my response was not an overwhelming success, but it wasn’t a complete failure, either, because of the stability of the other tumors.  We are in a gray area; the body might still respond more, but from trying to read between the lines of what the docs said, they don’t believe there will be any further response.

 

In addition, there is nothing more NIH can offer us in the way of therapy.  We have one more check-up next month and then we will probably be done with this study and on our own again.

 

However, there are still more options that we can pursue.  Along with prayer, there is a study being done with the ALS drug which seems to work with melanoma cases, so we have not exhausted all of our options, yet.

Lots of funny stuff happened too, but they need to be told in person.

 

So, Glory and Honor and Praise to God for His unspeakable love to us in all of this.   Looking forward to seeing you all when we get home.

Mike’s Got the Big Head

They moved someone into the other bed in my room, so they had to kick Frances out.  (I don’t know why this is a rule, but it is.)  So, since we had Wednesday and Thursday free, we booked a room at our favorite Marriot and spent Wednesday seeing Washington – through the rain and in the cold!  The high here on Wednesday was 42 with rain.  We had booked a trolley tour but with the rain drops on the outside and the fogging on the inside, we could see very little.

 

But, we did get a good look at Georgetown and even saw a barge being pulled along the canal by mules.  It was like stepping back into the 1600s!

 

But, the hospital called us late in the day and said there was a problem with the MRI on Tuesday.  Apparently, I have such a big head that they didn’t get all the picture they wanted.  So, I had to be back here at 8am to have another MRI.

 

Afterward, I talked to Dr. Yang and he told me that they also found “some spots” on the spine that they hadn’t seen before.  We discussed a different, but similar, treatment for this.  I haven’t talked in depth with him, so there are still a lot of questions.  As I learn more, I’ll post it here.

If it’s April, it must be Bethesda

So, once again, dear friends, we find ourselves in our home-away-from-home here at the NIH.  This time, we are in a room with two beds because we will not be neutrapenic and we will only be here for two procedures. 

 

Today, we have a MRI to locate the 2mm sized tumor on the left side of my brain.  Fortunately, since we only use 10% of our brains, the chances are good that it is located in the 90% I don’t use!  Seriously, it is on the outside in the left front and they don’t forsee any problems.

 

We watched a video this morning of the Gamma knife procedure.  The first thing we saw was this guy teeing off on the golf course.  Apparently, he has a tumor in his brain and I can only hope that the procedure helped his atrocious golf swing.  Then they fitted him with his “halo” which is held in place by four screws.  The doctors use an anesthetic much like lidocane to numb the spots and, according to the nurse, this is the worst part of the procedure.  However, the patient has to have a CT with this halo and then wait up to four hours for the doctor, the physicist (!?), and the neurologist to create a procedure for the actual radiation therapy with this halo on his head.  You can’t lie down, you can’t touch it, and you better not bump it on anything or they start all over again.  It’s a very critical time.  According to Frances, a physicist is present because they actually use calculus to formulate the procedure.  (And you thought you’d never have a use for calculus in your life!)

 

My radiation is scheduled for Friday morning and we have to be at the RadOnc(B2) clinic at 0630.  We might be done by 2 pm!  I’ll try to get Frances to take a picture of my halo, if they’ll let us.  (Frances said that this “halo fitting” is so that, when I get to heaven, I can bypass this line and go straight in.   I said I don’t deserve this one, either.)

 

Of course, as with every medical procedure, there is always a chance of side affects, not the lease of which is some loss of memory or critical thinking skills.  So, if they next time we meet, I can’t remember your name, it’s the radiation!  (What a handy excuse!)  If I forget to return your phone call, it’s the radiation.  And my critical thinking skills were never that good anyway, so I’m not worried about that.

 

I have this room until Saturday morning but Frances is like the birds of the air and has no place to stay.  For some reason, if there’s another patient in the other bed in my room, she has to leave.  She was able to stay last night, but after today, we are not required to be back here until Thursday night, so we might go find a place to stay for a couple of nights.  She does have a reservation at the Family Lodge for Friday night (one out of five!), so we have that covered.

 

But, we have an early flight on Saturday and the shuttle buses don’t run on the weekend, so we will have to HIKE to the Metro station, ride it to the end of the line and then take a bus to BWI.  We should be home mid-afternoon on Saturday.

Change of Plans

After posting yesterday, we got a call from Dr. Kitano.  She had talked with the neuro-surgeons who decided that 2 centimeters is too small to operate on.  According to them (him/her?), the danger of the operation is greater than the problem of the tumor (at this time) and that such a small lesion might even be hard to find.

Therefore, we’re back to radiation.  According to Dr. Kitano, the first step is a special MRI to locate the exact spot and chart it so that the radiation procedure (called a Gamma knife) can focus on that spot only.  The gamma knife can take out the lesion and a centimeter around the lesion to insure they get it all.

The problem is scheduling.  To get this done quickly, we have to have the MRI next Tuesday but the gamma knife procedure can’t be done until Friday.  Frances was scheduled to spend next week with Caleb and the seniors on a trip to New York, but she chose to come with me to Bethesda instead.  We could have postponed this until the end of the month, but she insisted on doing it next week.

So, off we go again to Bethesda, this time we will have two days between the two procedures to see the sights.

2nd Test Results

We have a mixed bag of results, this time.  The tumors in the lymph nodes under my left arm have shrunk and the tumor next to my pancreas is stable, as are the small sub-cutaneous lesions on my back.  Overall, Dr. Kitano said I have a 10% reduction in the size of the tumors.

The question we asked, and I’m sure you are wondering, too, was “Is that good or great or not-so-good?”  Well, the answer is that it is not reason for euphoria.  However, we must remember that there is no evidence of any new tumors in the torso.  That is good news.  According to Dr. Yang, some people go months before any real sign of change occurs.  Even if the tumors are “killed”, the scar tissue can hang around awhile before the body removes them.

But, while there was no new evidence in the torso, the MRI showed a small spot on the outside of my brain that was not there at the beginning of treatment at the end of January.  Dr. Yang explained this new “presentation” probably began weeks or months before we started treatment and it takes 32 “doublings” of the tumor before it can be seen by the x-ray.  Also, the brain has a separate defense system than the body – sort of a defense within a defense – that prevents the TIL cells from getting in the brain box and doing their job.

Dr. Yang  suggested surgery to remove this tiny lesion as the best way to take care of it.  If we used radiation, it would kill the tumor but would leave a scar that would have to be watched because they would never know if it was fully killed or not.  Radiation would be the answer if there were more than one and if they were deep in the brain, but that is not the case here.

We all must remember that we are still in the early stages of treatment.  The human mind sees that I look healthy and feel great, so we get a sense of victory.  (I do see somewhat of a puzzled look in the doctors’ faces when they ask me how I feel.  I get the idea that they think I should feel sicker – headaches, etc.   Although, you know doctors: they don’t [can't] always tell you what’s on their minds.)  There is still a long way to go and we haven’t even had to consider Plan B yet (we DO have a Plan B, also).

So, we must keep praying because the war has been won, but the battle must still be fought.

So, we are waiting to hear from Dr. Kitano to find out when they can schedule the surgery.  When that happens, we will be in Bethesda for about four days and then be able to come home a couple of days after the surgery.

Frances and I appreciate your concern, your prayers, and your support!