Just wanted to let everyone know that my husband passed away on June 10th.  He died in hospital, peacefully in his sleep, in a morphine induced coma from the mitoxantrone induced leukemia.

Ironically, his last MRI in early June again showed no new lesions and signs of lesion healing.  If only...

Most days I am okay.  Trying to decide how to move forward...

My best to everyone here and thank you again for all of the support over the past few years !

Long overdue here for an update.

Over the past 7 months my husband has spent 60 % of it in the hospital.  Nearly died several times from various complications of the chemo and of them wiping out his immuneⁱ system to treat the Secondary Acute Myelogenous Leukemia that resulted from using the drug mitoxantrone to treat the bacterial induced lesions in his brain.

The chemo made his cognitive function much worse.

Today - he is still alive and out of the hospital.  He is in what is called Complete Remission which means they can find no signs of the leukemia upon 5 separate bone marrow biopsies.  His brain is starting to recover some of the lost function from the chemo but he is still in worse shape than he was this time last year. 

After 4 weeks in the hospital and surviving induction chemotherapy for Novantrone induced leukemia, my husband was able to come home about 12 days ago.  Late last week he went for a bone marrow biopsy.  The biopsy was to determine if the chemo did any good.  

We got the results today - it was negative - which is good.  Seems to indicate that against amazing odds, my husband has entered remission.  For how long?  Only time will tell.  Hopefully a generous amount of time. 

First the Sweet -

My husband's latest MRI looked the best it has yet.  Clear signs of large lesions healing, disappearance of smaller lesions, no signs of edema, etc... 

I will try again some time to post the images so that folks can see them for themselves.  All of the recent MRI's have been done on the same GE MRI machine by same tech and read by same neuroradiologist. 

The other part of the Sweet has been how much functional return my husband has experienced since starting his particular version of CAPⁱ. 

Trying to post the latest MRI views from those I previously posted.  Will try again later.

Last Friday, my husband completed 7 days of Alinia 500mg BIDⁱ.  Curious and amazing drug that Alinia.

Alinia or nitazoxanide is a thiazolide anti-infective that has been found to be active against anaerobic bacteria, many protozoa and quiet a range of viruses in cell culture models.  It's currently in clinical trials for treatment of chronic Hepatitis C.  It has also been found effective against C. difficile (although not FDA approved for this use) as well as borrelia cystic form (also unapproved use).

Per my husband's antibiotic doctor, I am working on adding two new agents - Tindamax 500mg TID and tetracycline 500mg TID to my husband's current multi drug cocktail. 

Instead of just letting it rip and adding both agents at once at full doses I decided to experiment a bit first.

First started Tindamax 500mg BIDⁱ.  By 4th day serious headrushes began, some vertigo.  Out of curiosity and as an experiment stopped Tindmax on Day 5 to watch for time to recover back to new "norm".   By 3rd day almost back but 2 additional days to be fully recovered.

Decided next to experiment with tetracycline addition to see what fall out occurs.

Today, we saw my husband’s neurologist who only treats MSⁱ and MS related diseases.

There are so many new people here lately that I have really debated posting this today.  In the end though, everyone needs to realize this therapy is really experimental and can be a very difficult journey at times.  The highs can be very high and the lows very low. 

Also everyone new please note - my husband has very severe and aggressive disease and is receiving very aggressive treatment. 

Here goes:

My constant nemesis Porphyriaⁱ has had the upper hand all week- really since first surfacing.  We have been in day to day combat skermishes for months now.

Maxing dosage out with 2 scoops of Questran twice a day, grams and grams of charcoal, husband now absolutely refusing smarties and glucose tabs. 

It's true porphyriaⁱ does seem to rule my husband's and my world lately. 

One missed dose of Questran or one slip up in anti-porphyria measures and yikes - angry rage resurfaces quickly. 

His current porphyria regime is as follows:

- Questran - 2 scoops at lunch with bile trigger, tried 1 scoop one day and - well - the afternoon wasn't pretty

- Questran - 1 scoop at bedtime one hour after seziure med and probiotics with bile trigger.  I usually have to wake him up for this and I struggle to stay awake myself to give it some nights.  But have found if I don't - we will pay.

- Unlimited Smarties throughout day

- Tons of Water

- Dietary restrictions

- Exercise restrictions

The Jimi Mepron Experience

On Sunday night April 6th, my husband had his first teaspoon of Mepron or should I say liquid gold.  One bottle - very expensive.  Thick and dark golden yellow similar to Jimi Hendrix Experience albumn cover- consistency is that of glue or thick paint.  Taste - not great but it's palatable.  Husband likes it better than he does the Questran.

Monday, April 7th to Friday, April 11th - observed no change

Last night,  my husband knew and was able to articulate his first, middle and last name as well as what city and state he lives.  He was also able to clearly state the name of our street but not the house number.  I was blown away.  He hasn't been able to do this since Aug/Sept 2006. 

He has no idea that today is Friday but he knows the Master's golf tournament is next week. 

He understands he has an infection in his brain.  Porphyriaⁱ - knock wood, throw salt, cross fingers is under control.  Appetite still excessive but not crazed.  Down to 5 mg of Prednisone and working way off.

Am going to attempt to start posting some of the before and current MRI views.

Since I am hogging the site today (sorry), I am going to wait to post any of the other views demonstrating clear improvement and also for posting some of the worst views - June 2007.

For perspective, very seasoned neurologists have visibly blanched after looking at my husband's MRI's.  He also sports the deficits that you might imagine go with them.

1st - Extreme psychological symptoms from intense porphyriaⁱ attack under control.  Excessive hunger still an issue but he is eating loads of smarties everyday.  Thanks again for all of the support both public and private on this board in helping me handle this issue.  I am -  by the way - completely out of the bunker and slowly beginning to recover some of my own sanity.  YAY!

Now to the subject of this blog post. 

This week on Tuesday, my husband had his first MRI since Sept 21, 2007.  We had an order for one in early January but I wasn't in any hurry and wanted to wait a bit longer.  I sat with tech and watched it from the screen while my husband was in machine and then reviewed films in the reader as they came out of printer. 

The start of the porphyriaⁱ attack was all there in my blog if only I had known the ramifications of what I was typing.   I am posting this summary of events as a clue for those who will follow behind.

These are excerpts from some of my posts over past several weeks:

Feb 12, 2008 "Now we pay the piper.  After 3 days of full on activity my husband is toast.